Saturday, September 29, 2007
Friday Current mood: content
Greetings from rainy California! I hope everyone is well. Things are going okay today. No setbacks to mention!!! The verdict is in......Macy Jane weighs 9.03 pounds!!!! She came in to the hospital weighing 11 pounds 2 ounces. Pretty big weight loss for 2 weeks. However, her eyes are no longer sunken in their appearance and she looks much much better. She has fallen back in love with her pacifier and cries when she spits it out! Steve sat with her today while me and mom had lunch and did some grocery shopping. I actually cooked dinner with Steve tonight and ate with mom, it was like we were a normal family!
MJs white count is still up to 40,000 today but she has had no fever. Last night we caught on to something. The nurse checked her temperature about 11pm and said that it was 38.8, under her arm. I asked him to do a rectal temperature because she didn't feel that warm to me and he did it reluctantly. Her temperature was only 37.4!! I told them that she gets very hot externally and you have to uncover her for about 5 minutes and then take it under the arm. We aren't sure why her temp is so high. Steve thinks that she has an ileus, which makes sense because her stools are very weird looking and she has only had 1 in the past 2 weeks. The docs are doing a KUB (xray of belly) in the am with her chest xray. Pray that her white count will come down, please!!!
Steve invited me to a Stanford University football game tomorrow night, if there are tickets available in the morning. That would be fun! I told him I would really like to see if the SF 49ers were playing while we are out here. How cool would that be? :o)
Well, I have my starbucks and a full belly of home cookin so I am going to go sit with MJ and read my book. Hope everyone is doing great!
Much love,
BJ
Thursday, September 27, 2007
Thursday, September 27, 2007
Wednesday Current mood: bouncy
Macy Jane is doing really really well, finally!! I know it is because of all of the prayers, it is awesome to see them working. She has been off of the ventilator for over 24 hours now and is doing well. She has a nasty sounding cough and her voice is barely there. She sounds like a newborn kitten :) It will come back in a few days though. She has been doing well at coughing up some thick mucous, such a fighter!
I finally was able to hold MJ last night! It felt so good, but she felt teeny tiny in my arms. It was like holding a newborn again.....she feels like she weighs 7 pounds and honestly I think she does. I talk about this a lot because it really bothers me. I took care of a lady about a year ago that had the end stages of cancer and her husband had a photo of her before she got sick and then to look at her you wouldn't know it was the same person. I feel like that is how MJ is. Don't get me wrong, she is still beautiful and will gain the weight back, but she is so WEAK from malnutrition that she doesn't have enough energy to suck a pacifier. She is currently on IV nutrition called TPN since last pm so in about a week or so she should look better. I cannot wait! Also, since I do nightshift at the hospital, I miss the things that happen in the early part of the day. Well, today I woke up to a beautiful picture in my cell phone.......MJ finally has her Mickey Button instead of that long floppy g-tube! She didn't have to go to the OR after all! The GI doctor came by and was like oh I can do this right now and within 5 minutes the new button was in place. They are giving her pedialyte through it now and so far she has tolerated it. I praise the Lord that she didn't have to go to the OR for that. We couldnt figure out why the docs were saying that she would have to when back home we just had to go to the g-tube clinic and have it switched out?!! YAY!
The doctor that extubated MJ on Saturday (when she was oversedated) was in the room tonight and I walked to the nutrition room to get some water and she was walking by. She said hello and smiled to the person in front of me and when she saw me, I smiled and she gave me a dirty look and looked at the floor! She hasn't said one word to me since Saturday, the heiffer! I don't care though, MJ has 2 doctors that are taking care of her now and they are really really good, and they listen to me and STeve!
MJ has a new thing that is going to take some getting used to for us. She no longer turns blue when she cries or coughs!!! I woke up this morning and that was my first thought.....Mj didn't turn blue last night!!!!! It is so weird because me and Steve always looked at her forehead and nose to see if it was blue....if it was, her o2 levels were low, but now she just has a red V that comes up on her forehead. That is good though......a step in the right direction!
California is so nice! The weather here is just awesome, but I miss home like crazy. Just to sleep in my own bed would be like heaven to me. The bed here is SO uncomfortable, I wake up with a backache each morning. It looks like anormal mattress, but when you sit on it, it feels like an airmattress. One person sits down beside you and you bounce high in the air and are higher than the other person! I would love to stick a knife in it and see if it would deflate. I would have a hard time explaining that to the RMH owners though :) I can't complain for 10 bucks a day though!!!
Well, I am going to get back to sitting with MJ. Please say a prayer for the little baby next to MJ. He is a little over a month old and today the people at the hospital had to have a talk with his "parents" (who we ALWAYS see at the RMH) and tell them that they are requiring them to come and visit the child at least 4 hours a day or else they were kicking them out of the ronald McDonald House. How sad is that? You have to be forced to come and see your child?! They would typically come for 15 minutes a day and that was it. I feel so bad for that baby because he just wants to be held and only gets held by the nurses. The mom and dad do not even ask to hold him! Tonight, I sat here for 15 minutes waiting to use the hospital computer because they were sitting here playing video games. I think they need to go back and tell them that they are required to spend that 4 hours with their child, just being in the hospital doesn't count. I do not understand people these days. If you don't want children then give them up for adoption or CLOSE YOUR LEGS! They are precious gifts from God and I can't stand to see dead beat parents. :(
Well, that's it for now. Finally some good news to report! I know I keep promising to post pics, but honestly until MJ is out of ICU I don't really have the time or want to go sit at a Starbucks to upload pics. I feel that I should be spending that time with MJ.
Much love,
Bethany
Wednesday Current mood: bouncy
Macy Jane is doing really really well, finally!! I know it is because of all of the prayers, it is awesome to see them working. She has been off of the ventilator for over 24 hours now and is doing well. She has a nasty sounding cough and her voice is barely there. She sounds like a newborn kitten :) It will come back in a few days though. She has been doing well at coughing up some thick mucous, such a fighter!
I finally was able to hold MJ last night! It felt so good, but she felt teeny tiny in my arms. It was like holding a newborn again.....she feels like she weighs 7 pounds and honestly I think she does. I talk about this a lot because it really bothers me. I took care of a lady about a year ago that had the end stages of cancer and her husband had a photo of her before she got sick and then to look at her you wouldn't know it was the same person. I feel like that is how MJ is. Don't get me wrong, she is still beautiful and will gain the weight back, but she is so WEAK from malnutrition that she doesn't have enough energy to suck a pacifier. She is currently on IV nutrition called TPN since last pm so in about a week or so she should look better. I cannot wait! Also, since I do nightshift at the hospital, I miss the things that happen in the early part of the day. Well, today I woke up to a beautiful picture in my cell phone.......MJ finally has her Mickey Button instead of that long floppy g-tube! She didn't have to go to the OR after all! The GI doctor came by and was like oh I can do this right now and within 5 minutes the new button was in place. They are giving her pedialyte through it now and so far she has tolerated it. I praise the Lord that she didn't have to go to the OR for that. We couldnt figure out why the docs were saying that she would have to when back home we just had to go to the g-tube clinic and have it switched out?!! YAY!
The doctor that extubated MJ on Saturday (when she was oversedated) was in the room tonight and I walked to the nutrition room to get some water and she was walking by. She said hello and smiled to the person in front of me and when she saw me, I smiled and she gave me a dirty look and looked at the floor! She hasn't said one word to me since Saturday, the heiffer! I don't care though, MJ has 2 doctors that are taking care of her now and they are really really good, and they listen to me and STeve!
MJ has a new thing that is going to take some getting used to for us. She no longer turns blue when she cries or coughs!!! I woke up this morning and that was my first thought.....Mj didn't turn blue last night!!!!! It is so weird because me and Steve always looked at her forehead and nose to see if it was blue....if it was, her o2 levels were low, but now she just has a red V that comes up on her forehead. That is good though......a step in the right direction!
California is so nice! The weather here is just awesome, but I miss home like crazy. Just to sleep in my own bed would be like heaven to me. The bed here is SO uncomfortable, I wake up with a backache each morning. It looks like anormal mattress, but when you sit on it, it feels like an airmattress. One person sits down beside you and you bounce high in the air and are higher than the other person! I would love to stick a knife in it and see if it would deflate. I would have a hard time explaining that to the RMH owners though :) I can't complain for 10 bucks a day though!!!
Well, I am going to get back to sitting with MJ. Please say a prayer for the little baby next to MJ. He is a little over a month old and today the people at the hospital had to have a talk with his "parents" (who we ALWAYS see at the RMH) and tell them that they are requiring them to come and visit the child at least 4 hours a day or else they were kicking them out of the ronald McDonald House. How sad is that? You have to be forced to come and see your child?! They would typically come for 15 minutes a day and that was it. I feel so bad for that baby because he just wants to be held and only gets held by the nurses. The mom and dad do not even ask to hold him! Tonight, I sat here for 15 minutes waiting to use the hospital computer because they were sitting here playing video games. I think they need to go back and tell them that they are required to spend that 4 hours with their child, just being in the hospital doesn't count. I do not understand people these days. If you don't want children then give them up for adoption or CLOSE YOUR LEGS! They are precious gifts from God and I can't stand to see dead beat parents. :(
Well, that's it for now. Finally some good news to report! I know I keep promising to post pics, but honestly until MJ is out of ICU I don't really have the time or want to go sit at a Starbucks to upload pics. I feel that I should be spending that time with MJ.
Much love,
Bethany
Sunday, September 23, 2007
Sunday, September 23, 2007
Sunday Current mood: annoyed
To say that I am highly pissed off would be an understatement. However, I must continue to be thankful that MJ is here with us and as far as her surgery goes, she is doing well, still doing better than most kids at this point post-op, according to her doctors.
However, the care that she is receiving is absolutely atrocious.......um I probably misspelled that, but you get my point. Saturday, a new doc was on, Dr. Wright. She was all ancy to extubate Macy Jane Saturday morning. According to all of the numbers and her breathing she was more than ready, has been for a while now. However, she was wanting to keep MJ partially sedated and in a comfortable place so that she would be easy to extubate without her getting fussy and causing herself to have a bronchospasm, or in plain terms think of it as an asthma attack. Well, the nurse had followed orders and gave MJ some chloral hydrate to calm her, and then given her her scheduled does of Ativan and Methadone about 2 minutes before they extubated her. Needless to say Macy Jane was pretty much zonked. The respiratory therapist gave her a breathing treatment right before they extubated her to help her not have an asthma attack after being extubated.
Well, they took the tube out and MJ did fine for the first 2 minutes then the doctor said that she wasn't breathing deep enough and ordered the nurse to get some versed, fentanyl, and vercuronium (a paralyzer) ready. Then she listened to MJ's lungs and said that she sounded like she was going to start wheezing in a few minutes. She then did a blood gas and reintubated her because her CO2 was slightly elevated, but her PO2 was fine.
I left the room at that point because I was furious. My first question was....how can you say that a child sounds like she is going to wheeze in a few minutes? To my understanding, you are either wheezing and tight, or you are not. There is no grey area of you might be about to. Secondly, Macy Jane was WAY TOO SEDATED to breathe on her own. She did great for the first 2 minutes, until all of the drugs that had been given 2 minutes before extubation kicked in. You could tell by looking at her because she was not opening her eyes or anything. She was drugged looking as I have been calling it.
Well, I walked back in the room and listened to the doctor say well you know she sounded like she was going to wheeze and her CO2 was slightly elevated and she just didn't do well after a couple of minutes. I looked at her and said was it all of that stuff or is it possible that she was OVERSEDATED??????? She looked at me and said well yeah in hindsight she was too sedated to be expected to be extubated. Then she proceeded to tell me about how babies that have had the Unifocalization surgery typically need to be in a comfortable state when they are extubated so that they do not broncospasm, etc and that she could either not give MJ anything to calm her or give her something and that she realized that with MJ it was obvious that she wasn't one that needed to be "comfortable". NO FREAKING JOKE SHERLOCK! I proceeded to tell her that every time MJ has been extubated in the past, she has done well, never having to be reintubated. The difference this time? MJ was drugged before taking the tube out. That is the ONLY difference. I pretty much said those words to her because I was hot hot hot. She proceeded to tell me that the meds that MJ was given should not supress her drive to breath because that was not a side effect. Excuse me? I am a nurse and I may work with adults and not children, but common sense comes in to play. If you overdose on ANYTHING what happens? You eventually stop breathing or have shallow respirations because you are so sleepy. MJ was breathing, she just wasn't breathing deep enough. SHE WAS ASLEEP! You can't expect a child to breathe deeply when they are full of meds that are meant to make her sleep. I told her that I was a nurse and that I know that if you are given enough antianxiety meds and pain meds, your breathing is not going to be the same, even if they are not known to cause respiratory depression. She then kept babbling on about this and that and I just started crying and I think she got my point and said she was going to go check on something and would get back to me. I haven't talked to her since then and do not wish to.
Yes, everyone makes mistakes and hindsight is always 20/20, but why is it so hard for them to listen to me and Steve and even my mom?! We have been there for MJ since day 1 and we know what works and what doesn't, but because we do not have MD behind our name our opinion is worthless? I am sick and tired of people not listening to us and because of it MJ is having to suffer needless results of their pridefulness.
So, I spent the night last night at MJs bedside just reading a book and talking to her nurse, who pretty much agreed with what I was saying. This morning I went to the RMH and slept for a while then stayed around there just lounging around and watching tv for the first time in a long time. I enjoyed it and needed the break before I went postal and killed someone or something. If there had been a cat in the road this morning I would have tried my hardest to kill it.....haha (sorry Sarah ;) The plan now is to take MJ off of the Methadone and Ativan tonight and start her on Diprivan. They don't use Diprivan much in children because of the effects on the liver, but they will only use it for a few hours and should be safe to use short term. Diprivan is a fast acting drug and once they turn it off, she should be good and awake within 5 minutes. The plan is to hopefully extubate her in the morning/afternoon tomorrow and see how she does. Please pray that she will do ok so that we can get out of the ICU in a few days and up to the regular room, which means we will be home about a week later if everything goes smoothly.
MJ has also been running a low grade fever. They did blood cultures, but so far have not grown anything, which is an answer to prayer. She is on antibiotics prophylactically. Please pray that the fever will go away and that any infection would be removed from her body.
She has lost a lot of weight, I am not sure how much but she is a lot smaller. Still as beautiful as ever though with those big blue eyes and that red hair!
Another thing that upset me is that the nurse yesterday put in an NG tube on Macy! I wasn't there or I would have stopped it. My mom told him before he did it that MJ has had a Nissen done and that she has a g-tube and he proceeded to tell her that if it wasn't right he could just remove it, no harm done and that he thought he heard the docs saying that she would need one so he went ahead and put one in. After he put it in he removed it because sure enough he wasn't supposed to put one in her because she has a g-tube. Turns out, there wasn't an order for one! I am seriously considering talking to the CVICU manager because that is just wrong! Even if the doctor ordered it, he should have assessed his patient enough to know that she has a g-tube that could be connected to suction without having to put MJ through the tube insertion. Which by the way, mom said that she did not even move when he put it in, if that tells you how sedated she is on methadone and ativan!!!! If you even come at her with oxygen for her nose she squirms and arches her back.
Anyways, lots going on here. Just taking it one day and one prayer at a time. God is probably tired of hearing from me by now, lol. Not really.
Tonight I went to dinner with mom and Steve at the Olive Garden. We split an entree and it was soo yummy. It felt good to get out for a bit. I am back at the hospital now and am going to go back and see MJ and sit with her tonight. Steve will be coming up in the morning and I will go to the room and sleep for a bit. I just do not want to be there when they extubate her again, I can't handle that emotionally right now. I know my limits and I am there and just need a little break from watching her suffer through some stuff. I know that it hurts me way more than it hurts her, if it even hurts her at all, but to remain sane I am going to start taking a bit more breaks from the hospital.
Thanks for the prayers, I think it is quite obvious that we still need them 24/7/365. Much love to you all!!
Bethany
Sunday Current mood: annoyed
To say that I am highly pissed off would be an understatement. However, I must continue to be thankful that MJ is here with us and as far as her surgery goes, she is doing well, still doing better than most kids at this point post-op, according to her doctors.
However, the care that she is receiving is absolutely atrocious.......um I probably misspelled that, but you get my point. Saturday, a new doc was on, Dr. Wright. She was all ancy to extubate Macy Jane Saturday morning. According to all of the numbers and her breathing she was more than ready, has been for a while now. However, she was wanting to keep MJ partially sedated and in a comfortable place so that she would be easy to extubate without her getting fussy and causing herself to have a bronchospasm, or in plain terms think of it as an asthma attack. Well, the nurse had followed orders and gave MJ some chloral hydrate to calm her, and then given her her scheduled does of Ativan and Methadone about 2 minutes before they extubated her. Needless to say Macy Jane was pretty much zonked. The respiratory therapist gave her a breathing treatment right before they extubated her to help her not have an asthma attack after being extubated.
Well, they took the tube out and MJ did fine for the first 2 minutes then the doctor said that she wasn't breathing deep enough and ordered the nurse to get some versed, fentanyl, and vercuronium (a paralyzer) ready. Then she listened to MJ's lungs and said that she sounded like she was going to start wheezing in a few minutes. She then did a blood gas and reintubated her because her CO2 was slightly elevated, but her PO2 was fine.
I left the room at that point because I was furious. My first question was....how can you say that a child sounds like she is going to wheeze in a few minutes? To my understanding, you are either wheezing and tight, or you are not. There is no grey area of you might be about to. Secondly, Macy Jane was WAY TOO SEDATED to breathe on her own. She did great for the first 2 minutes, until all of the drugs that had been given 2 minutes before extubation kicked in. You could tell by looking at her because she was not opening her eyes or anything. She was drugged looking as I have been calling it.
Well, I walked back in the room and listened to the doctor say well you know she sounded like she was going to wheeze and her CO2 was slightly elevated and she just didn't do well after a couple of minutes. I looked at her and said was it all of that stuff or is it possible that she was OVERSEDATED??????? She looked at me and said well yeah in hindsight she was too sedated to be expected to be extubated. Then she proceeded to tell me about how babies that have had the Unifocalization surgery typically need to be in a comfortable state when they are extubated so that they do not broncospasm, etc and that she could either not give MJ anything to calm her or give her something and that she realized that with MJ it was obvious that she wasn't one that needed to be "comfortable". NO FREAKING JOKE SHERLOCK! I proceeded to tell her that every time MJ has been extubated in the past, she has done well, never having to be reintubated. The difference this time? MJ was drugged before taking the tube out. That is the ONLY difference. I pretty much said those words to her because I was hot hot hot. She proceeded to tell me that the meds that MJ was given should not supress her drive to breath because that was not a side effect. Excuse me? I am a nurse and I may work with adults and not children, but common sense comes in to play. If you overdose on ANYTHING what happens? You eventually stop breathing or have shallow respirations because you are so sleepy. MJ was breathing, she just wasn't breathing deep enough. SHE WAS ASLEEP! You can't expect a child to breathe deeply when they are full of meds that are meant to make her sleep. I told her that I was a nurse and that I know that if you are given enough antianxiety meds and pain meds, your breathing is not going to be the same, even if they are not known to cause respiratory depression. She then kept babbling on about this and that and I just started crying and I think she got my point and said she was going to go check on something and would get back to me. I haven't talked to her since then and do not wish to.
Yes, everyone makes mistakes and hindsight is always 20/20, but why is it so hard for them to listen to me and Steve and even my mom?! We have been there for MJ since day 1 and we know what works and what doesn't, but because we do not have MD behind our name our opinion is worthless? I am sick and tired of people not listening to us and because of it MJ is having to suffer needless results of their pridefulness.
So, I spent the night last night at MJs bedside just reading a book and talking to her nurse, who pretty much agreed with what I was saying. This morning I went to the RMH and slept for a while then stayed around there just lounging around and watching tv for the first time in a long time. I enjoyed it and needed the break before I went postal and killed someone or something. If there had been a cat in the road this morning I would have tried my hardest to kill it.....haha (sorry Sarah ;) The plan now is to take MJ off of the Methadone and Ativan tonight and start her on Diprivan. They don't use Diprivan much in children because of the effects on the liver, but they will only use it for a few hours and should be safe to use short term. Diprivan is a fast acting drug and once they turn it off, she should be good and awake within 5 minutes. The plan is to hopefully extubate her in the morning/afternoon tomorrow and see how she does. Please pray that she will do ok so that we can get out of the ICU in a few days and up to the regular room, which means we will be home about a week later if everything goes smoothly.
MJ has also been running a low grade fever. They did blood cultures, but so far have not grown anything, which is an answer to prayer. She is on antibiotics prophylactically. Please pray that the fever will go away and that any infection would be removed from her body.
She has lost a lot of weight, I am not sure how much but she is a lot smaller. Still as beautiful as ever though with those big blue eyes and that red hair!
Another thing that upset me is that the nurse yesterday put in an NG tube on Macy! I wasn't there or I would have stopped it. My mom told him before he did it that MJ has had a Nissen done and that she has a g-tube and he proceeded to tell her that if it wasn't right he could just remove it, no harm done and that he thought he heard the docs saying that she would need one so he went ahead and put one in. After he put it in he removed it because sure enough he wasn't supposed to put one in her because she has a g-tube. Turns out, there wasn't an order for one! I am seriously considering talking to the CVICU manager because that is just wrong! Even if the doctor ordered it, he should have assessed his patient enough to know that she has a g-tube that could be connected to suction without having to put MJ through the tube insertion. Which by the way, mom said that she did not even move when he put it in, if that tells you how sedated she is on methadone and ativan!!!! If you even come at her with oxygen for her nose she squirms and arches her back.
Anyways, lots going on here. Just taking it one day and one prayer at a time. God is probably tired of hearing from me by now, lol. Not really.
Tonight I went to dinner with mom and Steve at the Olive Garden. We split an entree and it was soo yummy. It felt good to get out for a bit. I am back at the hospital now and am going to go back and see MJ and sit with her tonight. Steve will be coming up in the morning and I will go to the room and sleep for a bit. I just do not want to be there when they extubate her again, I can't handle that emotionally right now. I know my limits and I am there and just need a little break from watching her suffer through some stuff. I know that it hurts me way more than it hurts her, if it even hurts her at all, but to remain sane I am going to start taking a bit more breaks from the hospital.
Thanks for the prayers, I think it is quite obvious that we still need them 24/7/365. Much love to you all!!
Bethany
Saturday, September 22, 2007
Saturday, September 22, 2007
Friday Current mood: content
Macy Jane is doing well. I am in a much better mood. Life is good. Macy Jane finally got her PICC line today, but as a result of having to be paralyzed and sedated, they are waiting until Saturday morning to extubate her. That is fine with me, whatever is in her best interest.
Last night I finally found a quiet place to sleep on a couch and it was 20 degrees cooler on the 3rd floor than the 2nd so it worked out well. I went to the hotel around 1 this afternoon or excuse me the Ronald McDonald House, and slept til 7pm. I would have slept longer but I had a date with my hubby and my mom to go eat Vietnamese food. It was soo yummy. I dropped them off at the RMH, after stopping at Starbucks to get my daily fix, and came to the hospital. When I started talking to MJ she opened her eyes some and started wiggling, in a good way. Not agitated this time! I gave her a bath and washed her hair and she went right to sleep without having to have any extra medication! She is sooooo cute. I love her to death. How many times am I going to say that, right?!
Today they took out her last chest tube. She just has the pacing wires in now, but those should come out in the next few days. Tomorrow I get to hold her after they extubate her. I am super duper excited. It's been over a week since I was able to hold her. Seems like it has been 2 months!! She threw up all over her boppy so my mom went and bought her a new one before surgery so she has a brand spankin new one to cuddle in.
I am curious how much weight she has lost. Her cheekies are a lot smaller to me than they were, but after tomorrow morning she should be able to be back on track with her continuous feedings. Also, they are going to get OT to see her and evaluate feeding her by mouth hopefully. I cannot wait for this as they are supposedly some of the best in the nation since they specialize in children with heart defects and difficulty eating. I long for the day that I can give her a bottle!! Another bright note, on Tuesday they will be placing a Mickey Button to replace her g-tube! This means that it will almost be flat against her skin and I will be able to put gowns on her and normal clothes without having to worry about anything! I cannot wait. They do that part a little faster out here so we are taking advantage of it while we can.
Well, it is almost 1 am and I need to get some sleep on my ultra comfy and cushy couch......do you hear the sarcasm dripping in my voice?! Hey, it is better than sleeping on the street I guess, right? Tomorrow is going to be a busy, much anticipated day. Once she is off the vent she should go to a regular room in a few days and then after about a week GO HOME! Or at least back to Memphrica.
I hope all is well in your world. I will try to update tomorrow as to how MJ is doing after getting off of the breathing machine. It is amazing to me how much of a fighter that she is. Thank God for that red hair
Friday Current mood: content
Macy Jane is doing well. I am in a much better mood. Life is good. Macy Jane finally got her PICC line today, but as a result of having to be paralyzed and sedated, they are waiting until Saturday morning to extubate her. That is fine with me, whatever is in her best interest.
Last night I finally found a quiet place to sleep on a couch and it was 20 degrees cooler on the 3rd floor than the 2nd so it worked out well. I went to the hotel around 1 this afternoon or excuse me the Ronald McDonald House, and slept til 7pm. I would have slept longer but I had a date with my hubby and my mom to go eat Vietnamese food. It was soo yummy. I dropped them off at the RMH, after stopping at Starbucks to get my daily fix, and came to the hospital. When I started talking to MJ she opened her eyes some and started wiggling, in a good way. Not agitated this time! I gave her a bath and washed her hair and she went right to sleep without having to have any extra medication! She is sooooo cute. I love her to death. How many times am I going to say that, right?!
Today they took out her last chest tube. She just has the pacing wires in now, but those should come out in the next few days. Tomorrow I get to hold her after they extubate her. I am super duper excited. It's been over a week since I was able to hold her. Seems like it has been 2 months!! She threw up all over her boppy so my mom went and bought her a new one before surgery so she has a brand spankin new one to cuddle in.
I am curious how much weight she has lost. Her cheekies are a lot smaller to me than they were, but after tomorrow morning she should be able to be back on track with her continuous feedings. Also, they are going to get OT to see her and evaluate feeding her by mouth hopefully. I cannot wait for this as they are supposedly some of the best in the nation since they specialize in children with heart defects and difficulty eating. I long for the day that I can give her a bottle!! Another bright note, on Tuesday they will be placing a Mickey Button to replace her g-tube! This means that it will almost be flat against her skin and I will be able to put gowns on her and normal clothes without having to worry about anything! I cannot wait. They do that part a little faster out here so we are taking advantage of it while we can.
Well, it is almost 1 am and I need to get some sleep on my ultra comfy and cushy couch......do you hear the sarcasm dripping in my voice?! Hey, it is better than sleeping on the street I guess, right? Tomorrow is going to be a busy, much anticipated day. Once she is off the vent she should go to a regular room in a few days and then after about a week GO HOME! Or at least back to Memphrica.
I hope all is well in your world. I will try to update tomorrow as to how MJ is doing after getting off of the breathing machine. It is amazing to me how much of a fighter that she is. Thank God for that red hair
Friday, September 21, 2007
Friday, September 21, 2007
Thursday/Friday Ranting Current mood: crappy
WARNING: I am in a bad mood and this will probably be negative in parts.
Well, it's been over a week since Macy Jane had her surgery. I wish I could say that things have been smooth and we are coming home soon, but I cannot. She has had a hard time being sedated and gets agitated easily and instead of nurses trying to calm her down like a normal baby i.e. patting gently or singing, they automatically give her Morphine and Versed. Because of this she is now on Methadone and Ativan because she will go through withdrawals after being taken off of the other 2 drugs. The other day she was fussy and I simply lifted her legs and patted her diaper and whaddya know? She went to sleep. It pisses me off that people automatically go for sedation drugs when all she needs is some TLC. It was so bad that a doctor even told a nurse to actually try something besides drugging her.
Another thing is that the people are so RUDE out here. They think nothing of moving your stuff to the floor so that they can sit where you were. Every night for the past week I have been sleeping on a couch outside of the PICU so that I can get up and see how Macy is doing at any time. Well, last night 2 girls were sitting where I had my stuff and just making themselves at home. One girl had the nerve to have her feet on my pillow and blanket and the other was actually using one of my pillows. I politely told them that that was my stuff and that I sleep there, could they please move.
Well, tonight, there is another couple sitting in a chair in the area. No big deal. I went to spend some time with MJ about 11pm and came out at midnight and they had thrown my stuff in the floor and stretched out on the couch. No regard for the fact that I had my pillows on the couch and my "bed" made for me to sleep in. I very loudly gathered my stuff up and bumped the couch and said you people are so rude! Today in the CVICU I was sitting in a glider rocker and Steve in a regular chair. I got up to stretch and another nurse came behind me and moved my stuff out of the chair and just took it! She gave it to the girl next to MJ, which would have been ok with me but for God's sake, TELL ME! What gets me is that there was another rocking chair similar to mine in the room NOT being used. Nevermind the fact that we are 1500 miles away from home and have been stressed to the max for 4 months now (10 if you count the last part of my pregnancy) and are living out of suitcases. I am tired of inconsiderate people that think the world is all about them and their child. I stay up here probably 16-18 hours out of a day to be with my child and let her know that I am here for her (Steve and my mom are also here with me), but none of that matters to them. It is a hassle if we ask questions to the nurses and always get told "we'll talk about it in rounds and see what they say." Bullcrap, if I ask you a question about how my daughter is doing overnight then I expect an answer from YOU the nurse that is taking care of her, not some doctor that sees her for 5 minutes a day. I swear the people out here need to come to the south and see how it is to be friendly and cordial instead of acting like a cold dead (sometimes gay ;) fish.
Now, how is Macy Jane? We have been hearing for about 3 days now, "oh we will extubate her in the morning (take off of breathing machine)". Well, here we are and still not off. Today it was because they wanted her to have a PICC line placed while she was still under sedation, since her other central line is 8 days old. Well, the PICC nurse came around 11 to see if she saw anything with her ultrasound and she did. So, the nurse gave her some extra meds so she would stay asleep and the PICC nurse said she would be back in 30 minutes after the meds kicked in. Well, it is 1:30 in the morning on Friday morning and still not PICC line. So, that means that if they decide to extubate MJ it will be in the afternoon because she will require so much sedation during it.
She is doing really well as far as her cardiac status goes and everything else. I know that I have to continue being patient and that the doctors know more than I do. I agree with all of that, but sometimes I just come to my wits end and need a venting session. I long for the day that I can hold my little girl in my arms and rock her and sing to her and read books to her. They are so anti-hold out here it isn't even funny. If they are on the vent, they do not get moved. That is something that I miss about LeBonheur. They would at least let me hold her. She opens her eyes and looks at me and they don't sparkle like they did. They are very dull and grey........like a person on drugs. That is all temporary and will improve as she is taken off of the Morphine and Versed, but I miss seeing her sparkly blue eyes and big chubby cheeks in her adorable smile.
I miss my home and my car. MJ is now 4 months old and out of those 4 months, I have been at the hospital with her for 3 and 1/2 months. Sure I have been home for a night here or there, but to trully be able to wake up each morning in my house, to shower in my shower, to be able to take a bath, sit on my back porch, to DRIVE A NORMAL CAR (we are renting a piece of crap 4-cyliner Dodge Neon), all of that would be heaven to me. We are slowly getting there and in the end we will have our Macy Jane at home with us sleeping in her bed, riding in her car seat shopping with Mommy and Nana and Aunt Fiddle Dee Dee, and going on road trips to visit friends that we haven't seen in ages. Don't take the small things for granted in your life because when they are taken away, you realize how blessed you really were.
Sometimes I get bummed when people post pictures of their kiddos doing this or that, or writing about how their superstar did this at this early age, blah blah blah. Sometimes there are times that I think that people brag a little too much about their lives, especially when they know that there are others out there that are having a hard time. Or it could be that I long for the days that I can do that. I try not to get jealous of other things and I will be honest, I struggle with that daily. However, Macy Jane is the best daughter ever and a trully blessed gift from God. I would not trade her or a normal life for any amount of money in this world. If I had to give up everything to save her, I would do it in a heartbeat. Even if it meant moving to this God forsaken state. I am sure some of you are thinking that I am referring to you......and I more than likely am not. So don't worrry
I am sorry to sound so down tonight. It's just been a long 4 months and I am SO ready to be able to provide my daughter a normal, pain free life. I am sure after I find another place to sleep and get a few hours of sleep my outlook will be better, it always is. I do not stay down and discouraged for long because typing this all out shows me how trully blessed I am in so many different areas of my life and hearing from family and friends warms my heart.
I appreciate all of the prayers and donations to the Hearts for Macy Jane Fund. I can never say thankyou enough, but will do my best to say it a lot Please continue to pray......tomorrow is going to be a big day for Macy Jane. Hopefully I can hold her, that will make the world seem like such a better place to me if I can just do that. The plan for tomorrow is: hopefully to do the following: place a PICC line, take out her last chest tube with the hope that pulling it out will make her tiny pneumothorax disappear, take her off of the breathing machine, and get her adjusted to not being on narcotics anymore. That is a lot for one day. She is tough and will get through it with lots of prayers. I better go and find a place to nap for a few hours so that I can be there for her. Thanks so much yall,
Much Love
Bethany
p.s. Please say a prayer for my friend Sarah, she has a little boy named Flynn that will be going in for some testing this morning at 8:30 eastern time. Please pray that everything will turn out just fine and that God will calm her and her husbands nerves!!
Thursday/Friday Ranting Current mood: crappy
WARNING: I am in a bad mood and this will probably be negative in parts.
Well, it's been over a week since Macy Jane had her surgery. I wish I could say that things have been smooth and we are coming home soon, but I cannot. She has had a hard time being sedated and gets agitated easily and instead of nurses trying to calm her down like a normal baby i.e. patting gently or singing, they automatically give her Morphine and Versed. Because of this she is now on Methadone and Ativan because she will go through withdrawals after being taken off of the other 2 drugs. The other day she was fussy and I simply lifted her legs and patted her diaper and whaddya know? She went to sleep. It pisses me off that people automatically go for sedation drugs when all she needs is some TLC. It was so bad that a doctor even told a nurse to actually try something besides drugging her.
Another thing is that the people are so RUDE out here. They think nothing of moving your stuff to the floor so that they can sit where you were. Every night for the past week I have been sleeping on a couch outside of the PICU so that I can get up and see how Macy is doing at any time. Well, last night 2 girls were sitting where I had my stuff and just making themselves at home. One girl had the nerve to have her feet on my pillow and blanket and the other was actually using one of my pillows. I politely told them that that was my stuff and that I sleep there, could they please move.
Well, tonight, there is another couple sitting in a chair in the area. No big deal. I went to spend some time with MJ about 11pm and came out at midnight and they had thrown my stuff in the floor and stretched out on the couch. No regard for the fact that I had my pillows on the couch and my "bed" made for me to sleep in. I very loudly gathered my stuff up and bumped the couch and said you people are so rude! Today in the CVICU I was sitting in a glider rocker and Steve in a regular chair. I got up to stretch and another nurse came behind me and moved my stuff out of the chair and just took it! She gave it to the girl next to MJ, which would have been ok with me but for God's sake, TELL ME! What gets me is that there was another rocking chair similar to mine in the room NOT being used. Nevermind the fact that we are 1500 miles away from home and have been stressed to the max for 4 months now (10 if you count the last part of my pregnancy) and are living out of suitcases. I am tired of inconsiderate people that think the world is all about them and their child. I stay up here probably 16-18 hours out of a day to be with my child and let her know that I am here for her (Steve and my mom are also here with me), but none of that matters to them. It is a hassle if we ask questions to the nurses and always get told "we'll talk about it in rounds and see what they say." Bullcrap, if I ask you a question about how my daughter is doing overnight then I expect an answer from YOU the nurse that is taking care of her, not some doctor that sees her for 5 minutes a day. I swear the people out here need to come to the south and see how it is to be friendly and cordial instead of acting like a cold dead (sometimes gay ;) fish.
Now, how is Macy Jane? We have been hearing for about 3 days now, "oh we will extubate her in the morning (take off of breathing machine)". Well, here we are and still not off. Today it was because they wanted her to have a PICC line placed while she was still under sedation, since her other central line is 8 days old. Well, the PICC nurse came around 11 to see if she saw anything with her ultrasound and she did. So, the nurse gave her some extra meds so she would stay asleep and the PICC nurse said she would be back in 30 minutes after the meds kicked in. Well, it is 1:30 in the morning on Friday morning and still not PICC line. So, that means that if they decide to extubate MJ it will be in the afternoon because she will require so much sedation during it.
She is doing really well as far as her cardiac status goes and everything else. I know that I have to continue being patient and that the doctors know more than I do. I agree with all of that, but sometimes I just come to my wits end and need a venting session. I long for the day that I can hold my little girl in my arms and rock her and sing to her and read books to her. They are so anti-hold out here it isn't even funny. If they are on the vent, they do not get moved. That is something that I miss about LeBonheur. They would at least let me hold her. She opens her eyes and looks at me and they don't sparkle like they did. They are very dull and grey........like a person on drugs. That is all temporary and will improve as she is taken off of the Morphine and Versed, but I miss seeing her sparkly blue eyes and big chubby cheeks in her adorable smile.
I miss my home and my car. MJ is now 4 months old and out of those 4 months, I have been at the hospital with her for 3 and 1/2 months. Sure I have been home for a night here or there, but to trully be able to wake up each morning in my house, to shower in my shower, to be able to take a bath, sit on my back porch, to DRIVE A NORMAL CAR (we are renting a piece of crap 4-cyliner Dodge Neon), all of that would be heaven to me. We are slowly getting there and in the end we will have our Macy Jane at home with us sleeping in her bed, riding in her car seat shopping with Mommy and Nana and Aunt Fiddle Dee Dee, and going on road trips to visit friends that we haven't seen in ages. Don't take the small things for granted in your life because when they are taken away, you realize how blessed you really were.
Sometimes I get bummed when people post pictures of their kiddos doing this or that, or writing about how their superstar did this at this early age, blah blah blah. Sometimes there are times that I think that people brag a little too much about their lives, especially when they know that there are others out there that are having a hard time. Or it could be that I long for the days that I can do that. I try not to get jealous of other things and I will be honest, I struggle with that daily. However, Macy Jane is the best daughter ever and a trully blessed gift from God. I would not trade her or a normal life for any amount of money in this world. If I had to give up everything to save her, I would do it in a heartbeat. Even if it meant moving to this God forsaken state. I am sure some of you are thinking that I am referring to you......and I more than likely am not. So don't worrry
I am sorry to sound so down tonight. It's just been a long 4 months and I am SO ready to be able to provide my daughter a normal, pain free life. I am sure after I find another place to sleep and get a few hours of sleep my outlook will be better, it always is. I do not stay down and discouraged for long because typing this all out shows me how trully blessed I am in so many different areas of my life and hearing from family and friends warms my heart.
I appreciate all of the prayers and donations to the Hearts for Macy Jane Fund. I can never say thankyou enough, but will do my best to say it a lot Please continue to pray......tomorrow is going to be a big day for Macy Jane. Hopefully I can hold her, that will make the world seem like such a better place to me if I can just do that. The plan for tomorrow is: hopefully to do the following: place a PICC line, take out her last chest tube with the hope that pulling it out will make her tiny pneumothorax disappear, take her off of the breathing machine, and get her adjusted to not being on narcotics anymore. That is a lot for one day. She is tough and will get through it with lots of prayers. I better go and find a place to nap for a few hours so that I can be there for her. Thanks so much yall,
Much Love
Bethany
p.s. Please say a prayer for my friend Sarah, she has a little boy named Flynn that will be going in for some testing this morning at 8:30 eastern time. Please pray that everything will turn out just fine and that God will calm her and her husbands nerves!!
Tuesday, September 18, 2007
Tuesday, September 18, 2007
Tuesday Current mood: calm
We are all still surviving out here in California The wireless internet at the hospital is awful, so I will try to make time one day to go to one of the five million Starbucks out here and use their wi-fi to upload some pictures of MJ.
MJ has been doing well, relatively speaking. Today she started having bronchospasms so they are giving her Albuterol treatments to help control those. The doctor explained that this is completely normal because when the Unifocalization surgery took place, the doctor had to work right along the bronchial tracts, so it will just take time for them to heal. Because of this, she will be on the ventilator a few more days.
A few days ago her CRP was a little elevated (indicator of early infection in infants) so they did blood and urine cultures and started her on antibiotics, but her levels are back down and so far she has had no growth from her blood cultures.....no infection. Thank the Lord for that because she definately does not need that right now!!
Today we finally have a room at the Ronald McDonald House. Thank goodness for that because it only costs $10 a night there vs $64 at the hotel where we were staying! The RMH really is a special little place. Each night people come in and cook dinner, and breakfast is complimentary. They have a massive kitchen where each family has their own refrigerator and shelvig and a pantry that is stocked with all types of food, free to the guests! I was kind of shocked, but it is really nice and only 5 minutes from the hospital by car. Tonight Steve and my mom will stay there as I stay at the hospital at night with MJ.
The plan right now is to leave MJ on the ventilator for at least 1 more day. Her lungs still need time to heal, so we just have to be patient. Her cardiologist told me the other day that for an ICU nurse I sure was quiet and calm considering what all is going on with MJ. She expected me to be all up in Macy Jane's business and questioning everything that they did............sorry I am not like that, unless I see that something isn't being done or is being done that could harm her.
Well, we are finishing up laundry here and heading to get some dinner and clean out the motel! Hope everyone is well, continue to pray!
Tuesday Current mood: calm
We are all still surviving out here in California The wireless internet at the hospital is awful, so I will try to make time one day to go to one of the five million Starbucks out here and use their wi-fi to upload some pictures of MJ.
MJ has been doing well, relatively speaking. Today she started having bronchospasms so they are giving her Albuterol treatments to help control those. The doctor explained that this is completely normal because when the Unifocalization surgery took place, the doctor had to work right along the bronchial tracts, so it will just take time for them to heal. Because of this, she will be on the ventilator a few more days.
A few days ago her CRP was a little elevated (indicator of early infection in infants) so they did blood and urine cultures and started her on antibiotics, but her levels are back down and so far she has had no growth from her blood cultures.....no infection. Thank the Lord for that because she definately does not need that right now!!
Today we finally have a room at the Ronald McDonald House. Thank goodness for that because it only costs $10 a night there vs $64 at the hotel where we were staying! The RMH really is a special little place. Each night people come in and cook dinner, and breakfast is complimentary. They have a massive kitchen where each family has their own refrigerator and shelvig and a pantry that is stocked with all types of food, free to the guests! I was kind of shocked, but it is really nice and only 5 minutes from the hospital by car. Tonight Steve and my mom will stay there as I stay at the hospital at night with MJ.
The plan right now is to leave MJ on the ventilator for at least 1 more day. Her lungs still need time to heal, so we just have to be patient. Her cardiologist told me the other day that for an ICU nurse I sure was quiet and calm considering what all is going on with MJ. She expected me to be all up in Macy Jane's business and questioning everything that they did............sorry I am not like that, unless I see that something isn't being done or is being done that could harm her.
Well, we are finishing up laundry here and heading to get some dinner and clean out the motel! Hope everyone is well, continue to pray!
Friday, September 14, 2007
Friday, September 14, 2007
Friday Update Current mood: thankful
Sorry it has taken so long for me to update, the wireless internet has been down at the hospital and I have been too busy/tired to keep checking to see if it is working
Macy Jane is now post-op day 2. She is continuing to do very well considering all that she has been through. They left her chest open with a little see through patch over it to keep germs etc. out. Thank the Lord that they were able to close her chest today!!!! They did not close her chest after the surgery because she was on the heart/lung bypass machine for 344 minutes, which is a LONG time and they thought that she was going to swell a lot. However, she proved them wrong and did not swell very much so they were able to close her up today.
I cannot describe to you what it was like to see her for the first time after surgery. Being a nurse, I am used to seeing lots of tubes and wires.....but this too is different when it is your own child laying there. On top of the breathing machine, she has 3 chest tubes coming out of her chest, blue wires also known as pacing wires coming out of 2 different places, 2 arterial lines, 3 massive iv lines, and her chest was open. She was extremely pale and very very very cold (they wanted her to be cold). She still looked like our Macy Jane. She was not on any sedation medication post-op because they wanted her to wake up and get mad so that they would know that she was going to wake up after being on the bypass machine that long. She woke up overnight and was arching her back and wiggling and ever since they have had a hard time sedating her, but finally have the right formula. I went to see her Thursday morning around 6 and as soon as she heard my voice, she opened her eyes and looked at me and started wiggling. I don't talk very loud any more when I go in there so that she won't get upset. It completely made my day to see her open her eyes!! I didn't know that she had woken up at all and it was such a nice suprise.
Anyways, Dr. Hanley is such an awesome awesome person. He has such a meek and mild manner about himself and always takes the time to come and see us when he passes by the sitting area where we are. I thank the Lord for him, he has performed the actions that it took for the miracle in MJs heart and the Lord performed that miracle. God Bless Him!
Now, I am sure everyone wants to know what is next. It will continue to take a few days to get her off of the ventilator. She is on the lowest setting possible and is doing really really well. They want her to rest for a bit more. She is on 14 different IV medications and they are slowly going to start weaning them off. Once she is extubated (off breathing machine) she will move to a different area in the ICU for a few days and then go upstairs to a regular room. I do not know how long she will have the chest tubes, it depends on how much drainage that she has from them.
After this surgery, we should be able to go home (or at least back to Memphis and should be able to go home) for 3-5 months. This will give the arteries time to grow. We will fly back out to California to have the hole in her heart repaired. The recovery time from that surgery is very fast!! She could be off the ventilator within 8 hours after that surgery etc. This really and trully was the MAJOR surgery. Not that the other one isn't going to be major, but this next one is less complicated.
Well, I am going to try to upload some pictures of MJ on here. Please do not freak out, she has a lot of stuff coming in and out of her, but that is okay. Just think of it as all of the things that are saving her life!!!
I cannot say thank you enough for the prayers! God has been so good and I give him all of the praise and the glory for this miracle. I have so many thoughts running through my head and I can't help but think of that contemporary christian song "Our God is an awesome God". It trully says how I feel!! Please continue to keep us in your prayers for strength and peace. If they had El Porton type mexican food, I would consider moving out here. I could certainly handle having 70 degree temps pretty much year round with no humidity.
Much Love,
Bethany
Friday Update Current mood: thankful
Sorry it has taken so long for me to update, the wireless internet has been down at the hospital and I have been too busy/tired to keep checking to see if it is working
Macy Jane is now post-op day 2. She is continuing to do very well considering all that she has been through. They left her chest open with a little see through patch over it to keep germs etc. out. Thank the Lord that they were able to close her chest today!!!! They did not close her chest after the surgery because she was on the heart/lung bypass machine for 344 minutes, which is a LONG time and they thought that she was going to swell a lot. However, she proved them wrong and did not swell very much so they were able to close her up today.
I cannot describe to you what it was like to see her for the first time after surgery. Being a nurse, I am used to seeing lots of tubes and wires.....but this too is different when it is your own child laying there. On top of the breathing machine, she has 3 chest tubes coming out of her chest, blue wires also known as pacing wires coming out of 2 different places, 2 arterial lines, 3 massive iv lines, and her chest was open. She was extremely pale and very very very cold (they wanted her to be cold). She still looked like our Macy Jane. She was not on any sedation medication post-op because they wanted her to wake up and get mad so that they would know that she was going to wake up after being on the bypass machine that long. She woke up overnight and was arching her back and wiggling and ever since they have had a hard time sedating her, but finally have the right formula. I went to see her Thursday morning around 6 and as soon as she heard my voice, she opened her eyes and looked at me and started wiggling. I don't talk very loud any more when I go in there so that she won't get upset. It completely made my day to see her open her eyes!! I didn't know that she had woken up at all and it was such a nice suprise.
Anyways, Dr. Hanley is such an awesome awesome person. He has such a meek and mild manner about himself and always takes the time to come and see us when he passes by the sitting area where we are. I thank the Lord for him, he has performed the actions that it took for the miracle in MJs heart and the Lord performed that miracle. God Bless Him!
Now, I am sure everyone wants to know what is next. It will continue to take a few days to get her off of the ventilator. She is on the lowest setting possible and is doing really really well. They want her to rest for a bit more. She is on 14 different IV medications and they are slowly going to start weaning them off. Once she is extubated (off breathing machine) she will move to a different area in the ICU for a few days and then go upstairs to a regular room. I do not know how long she will have the chest tubes, it depends on how much drainage that she has from them.
After this surgery, we should be able to go home (or at least back to Memphis and should be able to go home) for 3-5 months. This will give the arteries time to grow. We will fly back out to California to have the hole in her heart repaired. The recovery time from that surgery is very fast!! She could be off the ventilator within 8 hours after that surgery etc. This really and trully was the MAJOR surgery. Not that the other one isn't going to be major, but this next one is less complicated.
Well, I am going to try to upload some pictures of MJ on here. Please do not freak out, she has a lot of stuff coming in and out of her, but that is okay. Just think of it as all of the things that are saving her life!!!
I cannot say thank you enough for the prayers! God has been so good and I give him all of the praise and the glory for this miracle. I have so many thoughts running through my head and I can't help but think of that contemporary christian song "Our God is an awesome God". It trully says how I feel!! Please continue to keep us in your prayers for strength and peace. If they had El Porton type mexican food, I would consider moving out here. I could certainly handle having 70 degree temps pretty much year round with no humidity.
Much Love,
Bethany
Wednesday, September 12, 2007
Wednesday, September 12, 2007
Wednesday PM Current mood: exhausted
We just saw Dr. Hanley a few minutes ago. Macy Jane's surgery is now over, it took over 14 hours and we still have not seen her. It could be over an hour before we do get to see her. MACY JANE MADE IT THROUGH SURGERY!!!
This is the deal. He was unable to do a complete repair, but he stated that this was purely his judgement call, based on years of experience as he put it. He told us that the pressures in her lungs were excellent, and he could have closed the hole in her heart but he did not know if long term that would be the way to go. He told us that by not closing it, this would allow her new pulmonary arteries to grow without him having to worry if they were getting too much blood and becoming narrowed. What does all of this mean? Macy Jane will still be able to turn blue, but her oxygen levels should be better than they were. In 3-6 months, she will come back to Palo Alto, California for a heart catheterization and then at that point they will more than likely be able to close the hole in the heart. He stated that this was a little disappointing to him, and he knew it was disappointing to us, but he also knew in his gut that this was the best long term decision for Macy Jane.
I was hoping that they could do the complete repair, but I am just so excited that they were able to at least fix Macy Jane's heart so far. God has blessed us so far and I am so thankful that we still have Macy Jane!!!!!! I will do whatever I can over the next few months to help her grow and stay healthy so that she can come back and be prepared for her surgery. God is completely in control and I am trusting him that he has a perfect plan for her.
That is all for now. I am going to go for now and wait for the call saying that we can go back and see her. Keep praying, she has a long road ahead, especially since we learned that her chest is still open.
Thank you to everyone for praying. She has a long road of recovery ahead of her and one more major surgery. They just came out and told us that her chest is still open, which means that she has a lot of swelling and it may be a few days before they close it. I am scared to see her because she is going to look pretty bad, but she is still my big girl and I love her so much.
Wednesday PM Current mood: exhausted
We just saw Dr. Hanley a few minutes ago. Macy Jane's surgery is now over, it took over 14 hours and we still have not seen her. It could be over an hour before we do get to see her. MACY JANE MADE IT THROUGH SURGERY!!!
This is the deal. He was unable to do a complete repair, but he stated that this was purely his judgement call, based on years of experience as he put it. He told us that the pressures in her lungs were excellent, and he could have closed the hole in her heart but he did not know if long term that would be the way to go. He told us that by not closing it, this would allow her new pulmonary arteries to grow without him having to worry if they were getting too much blood and becoming narrowed. What does all of this mean? Macy Jane will still be able to turn blue, but her oxygen levels should be better than they were. In 3-6 months, she will come back to Palo Alto, California for a heart catheterization and then at that point they will more than likely be able to close the hole in the heart. He stated that this was a little disappointing to him, and he knew it was disappointing to us, but he also knew in his gut that this was the best long term decision for Macy Jane.
I was hoping that they could do the complete repair, but I am just so excited that they were able to at least fix Macy Jane's heart so far. God has blessed us so far and I am so thankful that we still have Macy Jane!!!!!! I will do whatever I can over the next few months to help her grow and stay healthy so that she can come back and be prepared for her surgery. God is completely in control and I am trusting him that he has a perfect plan for her.
That is all for now. I am going to go for now and wait for the call saying that we can go back and see her. Keep praying, she has a long road ahead, especially since we learned that her chest is still open.
Thank you to everyone for praying. She has a long road of recovery ahead of her and one more major surgery. They just came out and told us that her chest is still open, which means that she has a lot of swelling and it may be a few days before they close it. I am scared to see her because she is going to look pretty bad, but she is still my big girl and I love her so much.
Wednesday, September 12, 2007
Wednesday, AM update Current mood: drained
Well, it is 10:30 out here and we kissed MJ good-bye around 7:45am. We are still waiting to meet Dr. Hanley, which means that since he hasn't come by, he hasn't started working on Macy Jane yet. The anesthesiologist that is working MJ's case, said that he has about 2 hours of work to do on Macy Jane before they even page Dr. Hanley to begin surgery. We are unsure if her chest will already be open when he goes back there or if he will actually open it. The supposed total time of surgery could be as long as 16+ hours. So, if you do not see a blog from me from the rest of the day, we do not know anything else. They did tell us that noone would update us, but if we just couldn't wait to know we could have a nurse practioner paged and if she were available could go back and get an update for us. Basically, no news is good news.
I noticed something. When Macy Jane had her stomach surgery, all they talked to us about was how she was at such a high risk for death etc etc. That is all we heard and took from the conversations with the surgery. However, this time noone has focused on that and have even said that death from the surgery is not likely. They see this type of defect all of the time around here and it is very common. It is so wierd how you can travel 1500 miles across the country and healthcare is so different.
I am completely at peace right now, even though my little girl is somewhere in this hospital fighting for her life. I know it is all of the people that are praying and I appreciate it. Please do not stop, I know it is the only thing that is keeping all of us from being a nervous wreck. I keep looking up to see if a man with blue scrubs and a brown sports jacket is coming down the hall. Let's get this show on the road folks.
Thanks for the prayers. Basically, at this point we will go with "no news from Bethany means good news". I will post a blog when we know something.
Much love,
Bethany
Wednesday, AM update Current mood: drained
Well, it is 10:30 out here and we kissed MJ good-bye around 7:45am. We are still waiting to meet Dr. Hanley, which means that since he hasn't come by, he hasn't started working on Macy Jane yet. The anesthesiologist that is working MJ's case, said that he has about 2 hours of work to do on Macy Jane before they even page Dr. Hanley to begin surgery. We are unsure if her chest will already be open when he goes back there or if he will actually open it. The supposed total time of surgery could be as long as 16+ hours. So, if you do not see a blog from me from the rest of the day, we do not know anything else. They did tell us that noone would update us, but if we just couldn't wait to know we could have a nurse practioner paged and if she were available could go back and get an update for us. Basically, no news is good news.
I noticed something. When Macy Jane had her stomach surgery, all they talked to us about was how she was at such a high risk for death etc etc. That is all we heard and took from the conversations with the surgery. However, this time noone has focused on that and have even said that death from the surgery is not likely. They see this type of defect all of the time around here and it is very common. It is so wierd how you can travel 1500 miles across the country and healthcare is so different.
I am completely at peace right now, even though my little girl is somewhere in this hospital fighting for her life. I know it is all of the people that are praying and I appreciate it. Please do not stop, I know it is the only thing that is keeping all of us from being a nervous wreck. I keep looking up to see if a man with blue scrubs and a brown sports jacket is coming down the hall. Let's get this show on the road folks.
Thanks for the prayers. Basically, at this point we will go with "no news from Bethany means good news". I will post a blog when we know something.
Much love,
Bethany
Tuesday, September 11, 2007
Tuesday, September 11, 2007
Tuesday Current mood: exhausted
The heart cath is done. Macy Jane is back in her regular room recovering from the anesthesia. She was on a little bit of oxygen initially, but has since come off of it. She did well, her legs have pulses in them and they are pink--unlike last time when they were blue after her heart cath.
This is what they found. God has been blessing little MJ for the past few months. Her MAPCA's (the arteries supplying her blood instead of the true pulmonary arteries) have grown. They didn't say how much, but they did say that they have grown. ANSWER TO PRAYER!!!! Secondly, her heart and lungs looked good and strong considering all that is wrong with it. She has a total of 6 MAPCA's, 3 for the right side of the heart and 3 for the left side of the heart.
The plan: Dr. Hanley has a "Cath Conference" tomorrow morning at 6:30am where he will meet with the cardiologists and review the images from todays hearth cath and he also talks about his other patients that will be having surgery within the next few weeks. Around 7am the anesthesiologist will leave the conference and come and tell us what they plan on doing in surgery exactly, then he will proceed to take MJ to the operating room. Surgery should start around 9am (11am Memphis time!)
The Physician Assistant is the one that gave us our pre-op talk. She works with Dr. Hanley every day and is his right hand woman. She thinks that they will do a sternotomy (open her chest via her breastbone) rather than a thoracotomy (go in through the right or left side of the chest). Because of this approach, they should be able to gather the arteries for both sides of the heart during this operation, rather than going back in a second time in a few months to do the other side. MJ's MAPCA's are all placed close together so they should be able to do this. What they are unsure of at this point, and won't know until surgery is if they will be able to do a complete repair, which means closing the hole in her heart. That all depends on what the pressures in the lungs read during the surgery. If not, she will have to come back within 3-6 months to have the complete repair. If they are able to do it all at once (which is what we are praying for), she would only need to have heart caths periodically and would have to have "conduit" replaced as she grows and gets bigger. She said that some people go as long as 12 years! All of the tissue and parts that they will be putting in MJ is from a cadaver (aka a dead person!) or from her own heart. They will use part of her pericardial sac to close the hole in her heart if they are able to do that. Pretty amazing stuff.
They talked to us a little bit about what will happen post-op as well. She will more than likely be on the breathing machine for at least 1-2 days. There is something called reperfusion injury that occurs and depending on the severity of that, determines what length of time she is on the ventilator. Reperfusion injury is when the lungs are not used to having an abundant supply of blood flow and aren't used to having the blood come from the proper place on the body. This can cause massive swelling for MJ over a period of days. This is usually what determines how long they are on the ventilator and how long she will have the chest tubes. She will probably be in the ICU for about a week, depending on how well she does. The shortest amount of time that we will be here is about 2 weeks, but it all depends on how well she does.
I am just SO thankful that God has blessed MJ so much. Thank ya'll for the prayers, they are working and it is awesome to see how!!!! I will keep ya'll updated tomorrow when I know something. It may be a few hours, but I will at some point. We have already been told that we will not have many updates from surgery as the surgeon and his staff do not have the time to come out. If anyone updates us it will be someone from anesthesia. It should take at bare minumum 8 hours, but more likely 10-12 hour surgery. Thanks for the prayers!!!!!!!! GOD IS SO GOOD.
Tuesday Current mood: exhausted
The heart cath is done. Macy Jane is back in her regular room recovering from the anesthesia. She was on a little bit of oxygen initially, but has since come off of it. She did well, her legs have pulses in them and they are pink--unlike last time when they were blue after her heart cath.
This is what they found. God has been blessing little MJ for the past few months. Her MAPCA's (the arteries supplying her blood instead of the true pulmonary arteries) have grown. They didn't say how much, but they did say that they have grown. ANSWER TO PRAYER!!!! Secondly, her heart and lungs looked good and strong considering all that is wrong with it. She has a total of 6 MAPCA's, 3 for the right side of the heart and 3 for the left side of the heart.
The plan: Dr. Hanley has a "Cath Conference" tomorrow morning at 6:30am where he will meet with the cardiologists and review the images from todays hearth cath and he also talks about his other patients that will be having surgery within the next few weeks. Around 7am the anesthesiologist will leave the conference and come and tell us what they plan on doing in surgery exactly, then he will proceed to take MJ to the operating room. Surgery should start around 9am (11am Memphis time!)
The Physician Assistant is the one that gave us our pre-op talk. She works with Dr. Hanley every day and is his right hand woman. She thinks that they will do a sternotomy (open her chest via her breastbone) rather than a thoracotomy (go in through the right or left side of the chest). Because of this approach, they should be able to gather the arteries for both sides of the heart during this operation, rather than going back in a second time in a few months to do the other side. MJ's MAPCA's are all placed close together so they should be able to do this. What they are unsure of at this point, and won't know until surgery is if they will be able to do a complete repair, which means closing the hole in her heart. That all depends on what the pressures in the lungs read during the surgery. If not, she will have to come back within 3-6 months to have the complete repair. If they are able to do it all at once (which is what we are praying for), she would only need to have heart caths periodically and would have to have "conduit" replaced as she grows and gets bigger. She said that some people go as long as 12 years! All of the tissue and parts that they will be putting in MJ is from a cadaver (aka a dead person!) or from her own heart. They will use part of her pericardial sac to close the hole in her heart if they are able to do that. Pretty amazing stuff.
They talked to us a little bit about what will happen post-op as well. She will more than likely be on the breathing machine for at least 1-2 days. There is something called reperfusion injury that occurs and depending on the severity of that, determines what length of time she is on the ventilator. Reperfusion injury is when the lungs are not used to having an abundant supply of blood flow and aren't used to having the blood come from the proper place on the body. This can cause massive swelling for MJ over a period of days. This is usually what determines how long they are on the ventilator and how long she will have the chest tubes. She will probably be in the ICU for about a week, depending on how well she does. The shortest amount of time that we will be here is about 2 weeks, but it all depends on how well she does.
I am just SO thankful that God has blessed MJ so much. Thank ya'll for the prayers, they are working and it is awesome to see how!!!! I will keep ya'll updated tomorrow when I know something. It may be a few hours, but I will at some point. We have already been told that we will not have many updates from surgery as the surgeon and his staff do not have the time to come out. If anyone updates us it will be someone from anesthesia. It should take at bare minumum 8 hours, but more likely 10-12 hour surgery. Thanks for the prayers!!!!!!!! GOD IS SO GOOD.
Monday, September 10, 2007
Monday, September 10, 2007
p.s. Current mood: hungry
God forbid you get a craving for some el porton here or anything like it. The Mexican food here is just AWFUL! I want a burrito with some GROUND beef in it, not shrimp or pork, and a taco with meat.....and cheese dip. Can you believe that no mexican restaurant around here has cheese dip???? I guess I will just have to do without my mexican. There is always good ole taco bell I can go to---that is if they have a normal menu. Just thought I would share that with you
p.s. Current mood: hungry
God forbid you get a craving for some el porton here or anything like it. The Mexican food here is just AWFUL! I want a burrito with some GROUND beef in it, not shrimp or pork, and a taco with meat.....and cheese dip. Can you believe that no mexican restaurant around here has cheese dip???? I guess I will just have to do without my mexican. There is always good ole taco bell I can go to---that is if they have a normal menu. Just thought I would share that with you
Monday, September 10, 2007
Monday Current mood: gloomy
Happy Monday! Today has been an okay day. MJ has been throwing up some, but that problem will be put on the back burner until after her surgery. The docs here think that she will probably need to go back to the OR and have the Nissen Fundoplication done again if the gagging/throwing up occurs after she has her heart surgery.
Also, the amount of blood in her diapers is starting to increase somewhat. I think I blogged about this before? I mentioned it to the nurse and doctors yesterday when she was admitted and they seemed concerned about it. They will be consulting gastrointestinal doctors to come and see her tomorrow, maybe. They don't think it is anything serious because it isn't all of the time and it really does look like a mucousy vaginal discharge, but they just want to be sure.
Besides that everything is going well. My parents were able to find a hotel today that was actually less than $100 a night to stay in. That is the going price out here for MOTEL 6, if that tells you anything about how expensive it is here. There was one hotel tucked away that offers a massive discount to families that have loved ones in the children's hospital, so we are very thankful for that. We were put on the list for a room at the Ronald McDonald house, but it could take a couple of weeks to get one. The social worker should be getting back to us in a few days to let us know the status.
I really am impressed with the doctors out here! I have actually seen more full fledged doctors.....not residents....not fellows....not medical students, DOCTORS!!! There were some great doctors at LeBonheur, but I guess I will always compare every where with LeBonheur. I just can't get over the change in the atmosphere!!! I miss the people at LeBonheur, but as far as the hospital goes....no way! It's just so pretty. I know that when MJ is having her surgery on Wednesday, I am going to go and sit out by the fountain for a few minutes to just kind of "get away". On the roof is a walking area with flowers and benches and stuff also so I may venture up there if I can get the code to the door that leads there.
I am staying with MJ tonight. She is already wrapped up and ready for bed. I think she is still on Memphis time because it is only 9pm here and she is out. Tonight I gave her her last bath and g-tube dressing change before she is admitted to the CVICU. The amazing thing is that she did not cry one time! She usually screams bloody murder when I change the g-tube dressing, but the site looks much better so it may just be that it doesn't hurt or burn when I change it now.
They have a tv channel here that is nothing but Baby Einstein stuff. Macy Jane loves it!!! People always told me that babies can't see this and that, but if you turn the TV on MJ immediately will focus on it and move her eyes as the characters on the screen move. You can do anything you want to her during that time because she is so focused on it! Today, she also made a cooing noise, but she hasn't done it since, the little booger! She also actually reached out for her green frog today, multiple times!!!
Well, I guess that is it. Most of that wasn't very helpful or useful information, but I am just passing the time tonight. I do not dread tomorrow, I am ready to know exactly what the Lord has been doing in my little girls heart the past 3 and 1/2 months. Given her history of taking a couple of days to come off of the ventilator, they will more than likely leave her on the ventilator after her heart catheterization and put her in the CVICU. That is just as well in my eyes because it is less trauma to her throat. I can still sit back there with her, so I will stay tomorrow night also. They said that her surgery will probably be around 9am on Wednesday morning (11am Memphis time). Dr. Hanley has a conference with the cardiologists on wednesday mornings at the crack of dawn and will do her surgery after the conference. I hope he drinks lots of Starbuck's during that conference Somebody get that man an IV will nothing but Starbucks in it.....haha. Speaking of, there is a starbucks bar in the cafeteria here and they are actually cheaper than going around the corner to the local Starbucks. So instead of my Venti White Chocolate Mocha with 3 splenda's costing 4.75, it is only 4.20 I am going to have to cut down on the size and the frequency of getting them, or I will be broke in a month.
Well, thanks for all of the prayers and encouraging messages. Tomorrow and Wednesday will probably be the longest days of our lives, so far but God is with us. I will post more as I know it, I can promise you that. No matter if it is good news or bad.
Much love,
Bethany
Monday Current mood: gloomy
Happy Monday! Today has been an okay day. MJ has been throwing up some, but that problem will be put on the back burner until after her surgery. The docs here think that she will probably need to go back to the OR and have the Nissen Fundoplication done again if the gagging/throwing up occurs after she has her heart surgery.
Also, the amount of blood in her diapers is starting to increase somewhat. I think I blogged about this before? I mentioned it to the nurse and doctors yesterday when she was admitted and they seemed concerned about it. They will be consulting gastrointestinal doctors to come and see her tomorrow, maybe. They don't think it is anything serious because it isn't all of the time and it really does look like a mucousy vaginal discharge, but they just want to be sure.
Besides that everything is going well. My parents were able to find a hotel today that was actually less than $100 a night to stay in. That is the going price out here for MOTEL 6, if that tells you anything about how expensive it is here. There was one hotel tucked away that offers a massive discount to families that have loved ones in the children's hospital, so we are very thankful for that. We were put on the list for a room at the Ronald McDonald house, but it could take a couple of weeks to get one. The social worker should be getting back to us in a few days to let us know the status.
I really am impressed with the doctors out here! I have actually seen more full fledged doctors.....not residents....not fellows....not medical students, DOCTORS!!! There were some great doctors at LeBonheur, but I guess I will always compare every where with LeBonheur. I just can't get over the change in the atmosphere!!! I miss the people at LeBonheur, but as far as the hospital goes....no way! It's just so pretty. I know that when MJ is having her surgery on Wednesday, I am going to go and sit out by the fountain for a few minutes to just kind of "get away". On the roof is a walking area with flowers and benches and stuff also so I may venture up there if I can get the code to the door that leads there.
I am staying with MJ tonight. She is already wrapped up and ready for bed. I think she is still on Memphis time because it is only 9pm here and she is out. Tonight I gave her her last bath and g-tube dressing change before she is admitted to the CVICU. The amazing thing is that she did not cry one time! She usually screams bloody murder when I change the g-tube dressing, but the site looks much better so it may just be that it doesn't hurt or burn when I change it now.
They have a tv channel here that is nothing but Baby Einstein stuff. Macy Jane loves it!!! People always told me that babies can't see this and that, but if you turn the TV on MJ immediately will focus on it and move her eyes as the characters on the screen move. You can do anything you want to her during that time because she is so focused on it! Today, she also made a cooing noise, but she hasn't done it since, the little booger! She also actually reached out for her green frog today, multiple times!!!
Well, I guess that is it. Most of that wasn't very helpful or useful information, but I am just passing the time tonight. I do not dread tomorrow, I am ready to know exactly what the Lord has been doing in my little girls heart the past 3 and 1/2 months. Given her history of taking a couple of days to come off of the ventilator, they will more than likely leave her on the ventilator after her heart catheterization and put her in the CVICU. That is just as well in my eyes because it is less trauma to her throat. I can still sit back there with her, so I will stay tomorrow night also. They said that her surgery will probably be around 9am on Wednesday morning (11am Memphis time). Dr. Hanley has a conference with the cardiologists on wednesday mornings at the crack of dawn and will do her surgery after the conference. I hope he drinks lots of Starbuck's during that conference Somebody get that man an IV will nothing but Starbucks in it.....haha. Speaking of, there is a starbucks bar in the cafeteria here and they are actually cheaper than going around the corner to the local Starbucks. So instead of my Venti White Chocolate Mocha with 3 splenda's costing 4.75, it is only 4.20 I am going to have to cut down on the size and the frequency of getting them, or I will be broke in a month.
Well, thanks for all of the prayers and encouraging messages. Tomorrow and Wednesday will probably be the longest days of our lives, so far but God is with us. I will post more as I know it, I can promise you that. No matter if it is good news or bad.
Much love,
Bethany
Sunday, September 9, 2007
Sunday, September 09, 2007
C-a-l-i-f-o-r-n-i-a
Well, we made it! We left the hospital about 8am and headed towards the private airport in West Memphis. It was pouring down rain and they had the sirens blaring and I hear the nurse from the back of the ambulance say "turn off the lights and sirens, there is a delay". I started panicking and freaking out in my head and started praying that the pilot would be able to land his plane at the airport. About 3 minutes later, pedi-flight called back saying that the pilot had been allowed to land. YAY!
We were in the air about 2 hours and landed in Colorado to refuel. I have to tell this hilarious story that happened there :) There was a lady that was a air traffic controller and she had on really really short black shorts and a yellow rain jacket. Well it was 50 something degrees there and I was commenting to the flight nurse about how that girl could wear those shorts and not freeze to death! Well, we used the bathroom and got back in the jet and I see the same girl walking in front of the airplane and the wind whipped up the back of her shorts, or what I thought was shorts. It turns out that it was actually a short black skirt and we all got a view of her butt---and her pretty black thong! Anyways, we were in the air about 4 and 1/2 hours total. MJ did very well and was just looking around as the plane took off and landed. She didn't even cry, except when the flight nurse was messing with her seat belt.
Well, Palo Alto is beautiful. I may not come home, haha. The temperature is so nice, it is like being in Memphis during October. The area is really pretty, kind of yuppyish though. The hospital is cute. Very different from Lebonheur. It is beautiful outside and there are these little gardens with water features all around and pretty flowers. The only downside is that Macy Jane has to share a room, but the room is large and the little boy is such a cutie pie and seems to be very good. There are private rooms here and we may request one after she has her heart surgery.
The plan as we know it thus far: Macy Jane's hearth cath will be on TUESDAY not Monday as we originally thought. Surgery is still planned for Wednesday, as far as we know. The doctors and nurses have all been really sweet and kind, so far. MJ seems to not even notcie that she changed zip codes, she is such a cutie.
Well, I need to run. Just wanted to let everyone know how we are doing and that we made it. I will post more as I know it
C-a-l-i-f-o-r-n-i-a
Well, we made it! We left the hospital about 8am and headed towards the private airport in West Memphis. It was pouring down rain and they had the sirens blaring and I hear the nurse from the back of the ambulance say "turn off the lights and sirens, there is a delay". I started panicking and freaking out in my head and started praying that the pilot would be able to land his plane at the airport. About 3 minutes later, pedi-flight called back saying that the pilot had been allowed to land. YAY!
We were in the air about 2 hours and landed in Colorado to refuel. I have to tell this hilarious story that happened there :) There was a lady that was a air traffic controller and she had on really really short black shorts and a yellow rain jacket. Well it was 50 something degrees there and I was commenting to the flight nurse about how that girl could wear those shorts and not freeze to death! Well, we used the bathroom and got back in the jet and I see the same girl walking in front of the airplane and the wind whipped up the back of her shorts, or what I thought was shorts. It turns out that it was actually a short black skirt and we all got a view of her butt---and her pretty black thong! Anyways, we were in the air about 4 and 1/2 hours total. MJ did very well and was just looking around as the plane took off and landed. She didn't even cry, except when the flight nurse was messing with her seat belt.
Well, Palo Alto is beautiful. I may not come home, haha. The temperature is so nice, it is like being in Memphis during October. The area is really pretty, kind of yuppyish though. The hospital is cute. Very different from Lebonheur. It is beautiful outside and there are these little gardens with water features all around and pretty flowers. The only downside is that Macy Jane has to share a room, but the room is large and the little boy is such a cutie pie and seems to be very good. There are private rooms here and we may request one after she has her heart surgery.
The plan as we know it thus far: Macy Jane's hearth cath will be on TUESDAY not Monday as we originally thought. Surgery is still planned for Wednesday, as far as we know. The doctors and nurses have all been really sweet and kind, so far. MJ seems to not even notcie that she changed zip codes, she is such a cutie.
Well, I need to run. Just wanted to let everyone know how we are doing and that we made it. I will post more as I know it
Sunday, September 09, 2007
Travel Status and Updates Current mood: tired
Well, it's our last night in Memphis! YAY!!! I wish I could say that I am well rested and going to get a good nights sleep tonight, but I am so anxious about tomorrow that I don't know if I can sleep. My tummy has been upset and hurting....grrr I am internalizing way too much.
Macy Jane gave us a scare last night again. She turned blue....really blue because she was upset and then she had a tummy ache in the middle of that and it took almost 2 hours to calm her down. She was fightin and kicking so hard that she was kicking my hands away from patting her booty and about to jump out of my arms! But, the nurses were wonderful and instead of calling pedi-flight, they allowed me and Steven to calm her down and she finally recovered. I had visions of the ICU and her being on the ventilator running through my head and I kept crying out to God to please not let that happen. My prayers were answered
Another prayer has been answered. My parents and Steven made it to Palo Alto safely about 7pm our time, 5 pm California time. He said the temperature was about 70 degrees, no humidity and that the whole area is really nice. My parents rented a minivan and were able to get a hotel room about 5 minutes from the hospital. God is good
Me and MJ leave bright and early between 7 and 7:30 in the morning. Today some friends stopped by to wish us luck, I really appreciate that guys I hadn't seen my godkids in so long and they have gotten SO BIG! They are as cute as ever. Zach, the youngest, kept saying My Baby Macy is Heart Sick, but God is going to fix her. So sweet and innocent.
Whoa! I just heard an explosion in MJs diaper! I had better go and take care of that for her. She is one tired little girl this evening! She woke up at 7:30 this morning and did not go back to sleep until 7:30 tonight. I was going to bathe her, but will wait til the am since she is resting so well. I have a few loose ends to pack up here and I will be ready to go. Please pray for us tomorrow that everything goes ok and as planned. It is supposed to rain here tomorrow so pray that we aren't delayed. That would stink. I miss my family so much. It is really different knowing that noone is coming to visit me or stay with us tonight, but this time tomorrow night Iwill be in sunny california reunited with them.
Lots of people have emailed me about how they can find out how MJ is doing after the heart cath and after her surgery. Here's the plan. If we have internet access at the hospital, I will post updates on myspace as they become available to me during surgery. They usually call every 2 hours with updates and I will post. If not, I will find a place Wednesday night (or someone in my family will) that has wi-fi and post an update. Of course you can always email me your number and I will try my hardest to call you. Email will be better though, if we have access..
Thanks so much for the prayers and support, keep them coming. Especially pray for my stomach as it is really bothering me right now. I fought a migraine today, my first one in a long time, but it is gone now. Yay! Hope everyone is doing well. Much love,
Bethany
Travel Status and Updates Current mood: tired
Well, it's our last night in Memphis! YAY!!! I wish I could say that I am well rested and going to get a good nights sleep tonight, but I am so anxious about tomorrow that I don't know if I can sleep. My tummy has been upset and hurting....grrr I am internalizing way too much.
Macy Jane gave us a scare last night again. She turned blue....really blue because she was upset and then she had a tummy ache in the middle of that and it took almost 2 hours to calm her down. She was fightin and kicking so hard that she was kicking my hands away from patting her booty and about to jump out of my arms! But, the nurses were wonderful and instead of calling pedi-flight, they allowed me and Steven to calm her down and she finally recovered. I had visions of the ICU and her being on the ventilator running through my head and I kept crying out to God to please not let that happen. My prayers were answered
Another prayer has been answered. My parents and Steven made it to Palo Alto safely about 7pm our time, 5 pm California time. He said the temperature was about 70 degrees, no humidity and that the whole area is really nice. My parents rented a minivan and were able to get a hotel room about 5 minutes from the hospital. God is good
Me and MJ leave bright and early between 7 and 7:30 in the morning. Today some friends stopped by to wish us luck, I really appreciate that guys I hadn't seen my godkids in so long and they have gotten SO BIG! They are as cute as ever. Zach, the youngest, kept saying My Baby Macy is Heart Sick, but God is going to fix her. So sweet and innocent.
Whoa! I just heard an explosion in MJs diaper! I had better go and take care of that for her. She is one tired little girl this evening! She woke up at 7:30 this morning and did not go back to sleep until 7:30 tonight. I was going to bathe her, but will wait til the am since she is resting so well. I have a few loose ends to pack up here and I will be ready to go. Please pray for us tomorrow that everything goes ok and as planned. It is supposed to rain here tomorrow so pray that we aren't delayed. That would stink. I miss my family so much. It is really different knowing that noone is coming to visit me or stay with us tonight, but this time tomorrow night Iwill be in sunny california reunited with them.
Lots of people have emailed me about how they can find out how MJ is doing after the heart cath and after her surgery. Here's the plan. If we have internet access at the hospital, I will post updates on myspace as they become available to me during surgery. They usually call every 2 hours with updates and I will post. If not, I will find a place Wednesday night (or someone in my family will) that has wi-fi and post an update. Of course you can always email me your number and I will try my hardest to call you. Email will be better though, if we have access..
Thanks so much for the prayers and support, keep them coming. Especially pray for my stomach as it is really bothering me right now. I fought a migraine today, my first one in a long time, but it is gone now. Yay! Hope everyone is doing well. Much love,
Bethany
Wednesday, September 5, 2007
Wednesday, September 05, 2007
Thankful Current mood: thankful
Tonight I just wanted to share some things from my heart that I am thankful for.
First off, I am so thankful that I serve an awesome God that is ALWAYS there for me, even when I "put Him on a shelf". So many times in my life I have neglected my spiritual life, but never once has He forsaken me.
When I found out I was pregnant, I said why me, why now Lord? After the intial shock, I thanked God that He allowed me to be able to have children, and eventhough it wasn't when I thought I wanted to have a baby, He knew it was the perfect time. When we found out something was wrong with MJ on February 3rd, I was in pieces. I was distraught and angy and again wondered why. But, after much prayer and reading a book called When I lay My Isaac Down (thanks Dee for the book!) God gave me an unbelieveable peace inside of my heart and mind. Because of this, I was able to enjoy my pregnancy without worrying about the what if's and the why's. I cannot explain how I felt inside, it was as if God was right beside me every day comforting my heart and easing my worries. I loved being pregnant, even though I knew my baby girl had some mountains that she was going to have to climb.
When MJ first came out I cannot describe the feeling I had when I heard her cry and Steve say that she looked perfect. She is perfect in God's eyes. The first time I saw her up close was in the NICU at Baptist and all I could do was cry and thank God for such a beautiful baby and that I was able to carry her to term, even though the odds were stacked against me. When I arrived at Lebonheur and was told the seriousness of MJs heart condition, the Lord comforted me and put His loving arms around me and Steven and Macy Jane. The first time I held MJ and she looked up at me with her big beautiful blue eyes, my heart melted and I knew that God had given me a huge blessing. I have to admit that I did not "get attatched" or another way to say it is "bond with her" for several days because I was scared of losing her and thought if I didn't let my heart get too close, it would be easier if I lost her. However, the Lord changed my heart and the natural bonding took place.
Macy Jane Wiles has a long, hard, curvy road in front of her, but she has proved to all of us and her doctors that she is a fighter and she is not going to throw in her towel without a fight or the final say. September 12th is going to be a big day in her little life, but I have NO DOUBT that the Lord will see all of us through it, no matter what. He has gotten us through this far. Many days have been spent at Lebonheur Children's Medical Center, about 3 months actually, but God has let the time pass quickly and shown us through all of this that He is still faithful and in control. We have almost lost MJ a few times, but each time she bounces back and shows her will to live. I love Macy Jane more than I could ever show or say, but I am prepared for the Lord's will to be done. I have layed my Isaac down at the foot of the cross and if the Lord chooses to take Macy Jane to be his little angel, I will have to accept that and find peace in His perfect plan.
I also want to thank my family. For the first 6 weeks that MJ was in the hospital the 2nd time, I did not leave the hospital expect for lunch. Finally, everyone convinced me to get out and spend a night away. My parents have been awesome. My dad loved to feed MJ when she was able to take a bottle, and he was the only one that could get her to drink more than 20cc at a time and that just made his day. He is still upset that he can't feed her, but I promised him he would get to feed her again, someday. He has a nickname for MJ and it is splinter. It has 2 meanings. The first is that she is tough like a splinter and is going to "stick around" and the second is that she is going to "stick people", which basically means she is going to have people that love her when they see her and get to know her. I love it and thank God that I have such a wonderful dad. He used to be scared to hold her and would say "she is too fragile BJ", but he quickly got over that and within the first week of her life he held her without being afraid. He comes to the hospital every single night when he gets off of work after working 12 and 14 hour days and she ALWAYS smiles for him and that completely makes his day. Each night he says "well BJ she "stuck around" for one more day! I love my dad and thank him for all that he has done.
My mom is the next person that is just fabulous. Everyone that meets my mom automatically loves her. She is such a gentle and compassionate woman that has always been my Godly role model. She has been by my side through it all. When I cried, she cried, when I was happy, she was happy. She stays at the hospital with MJ on the nights that I sleep at home and she is so good with Macy Jane. Never once has she shied away from learning how to do something with MJ. She has no medical background, but was eager to learn all about the various tubes and lines that MJ had and it is such a comfort to know that when I am gone, she knows exactly what to do for MJ's medical needs. She has always called me "Soogie" for as long as I can remember. That is my nickname from her. Now that I have a daughter, she calls MJ "Soogie Bear" and I am proud that my daughter will someday have the special feeling of knowing that her Nana has a nickname just for her. She has also helped us out financially (her and dad) by buying our meals or buying MJ clothes when she is out and about. Her and dad are going to California with us and mom will be there the entire time that we are. I am so blessed to have such a wonderful and Godly mother.
The next people to thank are my sister and brother. When I found out something was wrong with MJ, Steve called Dee from the doctor's office and the very next day she drove in to town from Florida to be with me and comfort me while I was on bedrest. She was able to come back in to town and go to an ultrasound to see MJ for the first time and I am so happy she was able to experience that with me. When MJ was born, she stayed for a week and then came back a few weeks later and stayed for over 2 weeks. She could have chosen to stay in Florida and work, but she gave of herself and came to Memphis to help us out. Many nights she would stay up with me when we were at home and take care of MJ so I could sleep, or cook us dinner, and clean the house. She returned in July for Macy Jane's stomach surgery and again came in August to see her. Macy Jane loves her Aunt Fiddle Dee Dee and she is the best aunt possible. The other day she sent me pictures of clothes that she bought for Macy Jane for halloween, thanksgiving and winter. She didn't have to do that, but she is so giving. She will also be flying to California and staying a week with us. I have the best sister in the world and she has made my life so much easier.
My brother drive in the day before MJ was born and had to leave right after she was born. Due to his line of work, he wasn't able to come and see her again until the end of June. When he was able to see her, she was on the ventilator, but he didn't let that scare him, he wanted to hold her. He has been home twice in the past month and was able to hold MJ and talk to her in his many voices and she just smiled and kicked her little legs at her Uncle Moe Moe. Me and Moe haven't ever been really close, but he is always there when I need him and he is the best brother I could ask for! He picked out some clothes for her before she was born and I can't wait for MJ to be able to wear them.
I can't leave my friends and co-workers out either. Everyone has showed me how much they care by writing to me, calling me, and donating money to MJ's fund. Many have come to Lebonheur to visit with us and bring us snacks and goodies. Even if it was a short visit, it showed me that they trully care. Lots of people came in from out of town, and those that couldn't expressed their desire to come and visit. God has blessed me with some true gems and I thank each and every one of you.
Last, but definately not least, I have to thank my husband, Steven. After I had my c-section, he would get up in the middle of the night with me and help me set up my breast pump, take the milk back to the ICU, he cared for MJ during the night once we were in a regular room so that I could rest and recover from surgery. Even when I wanted to get up he would not let me. He is the sweetest man and the best father imaginable. He was able to take a month off of work when she was born and he wasn't just a daddy to MJ, but also a father. He has returned to work, often times working extra shifts, so that I could stay with Macy Jane at the hospital and not have to go back to work. On top of working, he has come to the hospital on his days off to help me and see MJ. She loves her daddy and it is obvious when he makes faces at her and she just gives that million dollar smile. It is amazing how little girls just wrap themselves around their daddies pinky finger. I can honestly say that our marriage is stronger through all of this. We are able to sleep in the same bed maybe one night a week, sometimes two, and do not get to have a lot of one on one time, but we still communicate with each other and show each other we love each other in different ways. He has been my rock more so than anyone else. I know that it has been stressful on him having to work and come to the hospital without ever really having a break from stress, but he has handled it well, and God is going to bless him through this, I just know it.
I know this blog is extremely long, but I had a lot of things I wanted to say. Please remember us in your prayers. Steven and my parents will be flying out of Memphis on Saturday, September 8th and please pray for their saftey. My sister is leaving Pensacola on Tuesday, September 11th (ICK what a day to fly!) and me and MJ will be leaving sometime at the end of this week or over the weekend. We should know tomorrow the exact time and day. If you forget to pray for our travel saftey, PLEASE just remember to be in prayer all day for Macy Jane on Monday as she undergoes a heart catheterization and on Wednesday when she goes for her life threatening surgery. So many have been faithful prayer warriors and I firmly believe that that is what has gotten us this far. Thank you to all of my friends for your love and your support, it is not taken for granted.
Thankful Current mood: thankful
Tonight I just wanted to share some things from my heart that I am thankful for.
First off, I am so thankful that I serve an awesome God that is ALWAYS there for me, even when I "put Him on a shelf". So many times in my life I have neglected my spiritual life, but never once has He forsaken me.
When I found out I was pregnant, I said why me, why now Lord? After the intial shock, I thanked God that He allowed me to be able to have children, and eventhough it wasn't when I thought I wanted to have a baby, He knew it was the perfect time. When we found out something was wrong with MJ on February 3rd, I was in pieces. I was distraught and angy and again wondered why. But, after much prayer and reading a book called When I lay My Isaac Down (thanks Dee for the book!) God gave me an unbelieveable peace inside of my heart and mind. Because of this, I was able to enjoy my pregnancy without worrying about the what if's and the why's. I cannot explain how I felt inside, it was as if God was right beside me every day comforting my heart and easing my worries. I loved being pregnant, even though I knew my baby girl had some mountains that she was going to have to climb.
When MJ first came out I cannot describe the feeling I had when I heard her cry and Steve say that she looked perfect. She is perfect in God's eyes. The first time I saw her up close was in the NICU at Baptist and all I could do was cry and thank God for such a beautiful baby and that I was able to carry her to term, even though the odds were stacked against me. When I arrived at Lebonheur and was told the seriousness of MJs heart condition, the Lord comforted me and put His loving arms around me and Steven and Macy Jane. The first time I held MJ and she looked up at me with her big beautiful blue eyes, my heart melted and I knew that God had given me a huge blessing. I have to admit that I did not "get attatched" or another way to say it is "bond with her" for several days because I was scared of losing her and thought if I didn't let my heart get too close, it would be easier if I lost her. However, the Lord changed my heart and the natural bonding took place.
Macy Jane Wiles has a long, hard, curvy road in front of her, but she has proved to all of us and her doctors that she is a fighter and she is not going to throw in her towel without a fight or the final say. September 12th is going to be a big day in her little life, but I have NO DOUBT that the Lord will see all of us through it, no matter what. He has gotten us through this far. Many days have been spent at Lebonheur Children's Medical Center, about 3 months actually, but God has let the time pass quickly and shown us through all of this that He is still faithful and in control. We have almost lost MJ a few times, but each time she bounces back and shows her will to live. I love Macy Jane more than I could ever show or say, but I am prepared for the Lord's will to be done. I have layed my Isaac down at the foot of the cross and if the Lord chooses to take Macy Jane to be his little angel, I will have to accept that and find peace in His perfect plan.
I also want to thank my family. For the first 6 weeks that MJ was in the hospital the 2nd time, I did not leave the hospital expect for lunch. Finally, everyone convinced me to get out and spend a night away. My parents have been awesome. My dad loved to feed MJ when she was able to take a bottle, and he was the only one that could get her to drink more than 20cc at a time and that just made his day. He is still upset that he can't feed her, but I promised him he would get to feed her again, someday. He has a nickname for MJ and it is splinter. It has 2 meanings. The first is that she is tough like a splinter and is going to "stick around" and the second is that she is going to "stick people", which basically means she is going to have people that love her when they see her and get to know her. I love it and thank God that I have such a wonderful dad. He used to be scared to hold her and would say "she is too fragile BJ", but he quickly got over that and within the first week of her life he held her without being afraid. He comes to the hospital every single night when he gets off of work after working 12 and 14 hour days and she ALWAYS smiles for him and that completely makes his day. Each night he says "well BJ she "stuck around" for one more day! I love my dad and thank him for all that he has done.
My mom is the next person that is just fabulous. Everyone that meets my mom automatically loves her. She is such a gentle and compassionate woman that has always been my Godly role model. She has been by my side through it all. When I cried, she cried, when I was happy, she was happy. She stays at the hospital with MJ on the nights that I sleep at home and she is so good with Macy Jane. Never once has she shied away from learning how to do something with MJ. She has no medical background, but was eager to learn all about the various tubes and lines that MJ had and it is such a comfort to know that when I am gone, she knows exactly what to do for MJ's medical needs. She has always called me "Soogie" for as long as I can remember. That is my nickname from her. Now that I have a daughter, she calls MJ "Soogie Bear" and I am proud that my daughter will someday have the special feeling of knowing that her Nana has a nickname just for her. She has also helped us out financially (her and dad) by buying our meals or buying MJ clothes when she is out and about. Her and dad are going to California with us and mom will be there the entire time that we are. I am so blessed to have such a wonderful and Godly mother.
The next people to thank are my sister and brother. When I found out something was wrong with MJ, Steve called Dee from the doctor's office and the very next day she drove in to town from Florida to be with me and comfort me while I was on bedrest. She was able to come back in to town and go to an ultrasound to see MJ for the first time and I am so happy she was able to experience that with me. When MJ was born, she stayed for a week and then came back a few weeks later and stayed for over 2 weeks. She could have chosen to stay in Florida and work, but she gave of herself and came to Memphis to help us out. Many nights she would stay up with me when we were at home and take care of MJ so I could sleep, or cook us dinner, and clean the house. She returned in July for Macy Jane's stomach surgery and again came in August to see her. Macy Jane loves her Aunt Fiddle Dee Dee and she is the best aunt possible. The other day she sent me pictures of clothes that she bought for Macy Jane for halloween, thanksgiving and winter. She didn't have to do that, but she is so giving. She will also be flying to California and staying a week with us. I have the best sister in the world and she has made my life so much easier.
My brother drive in the day before MJ was born and had to leave right after she was born. Due to his line of work, he wasn't able to come and see her again until the end of June. When he was able to see her, she was on the ventilator, but he didn't let that scare him, he wanted to hold her. He has been home twice in the past month and was able to hold MJ and talk to her in his many voices and she just smiled and kicked her little legs at her Uncle Moe Moe. Me and Moe haven't ever been really close, but he is always there when I need him and he is the best brother I could ask for! He picked out some clothes for her before she was born and I can't wait for MJ to be able to wear them.
I can't leave my friends and co-workers out either. Everyone has showed me how much they care by writing to me, calling me, and donating money to MJ's fund. Many have come to Lebonheur to visit with us and bring us snacks and goodies. Even if it was a short visit, it showed me that they trully care. Lots of people came in from out of town, and those that couldn't expressed their desire to come and visit. God has blessed me with some true gems and I thank each and every one of you.
Last, but definately not least, I have to thank my husband, Steven. After I had my c-section, he would get up in the middle of the night with me and help me set up my breast pump, take the milk back to the ICU, he cared for MJ during the night once we were in a regular room so that I could rest and recover from surgery. Even when I wanted to get up he would not let me. He is the sweetest man and the best father imaginable. He was able to take a month off of work when she was born and he wasn't just a daddy to MJ, but also a father. He has returned to work, often times working extra shifts, so that I could stay with Macy Jane at the hospital and not have to go back to work. On top of working, he has come to the hospital on his days off to help me and see MJ. She loves her daddy and it is obvious when he makes faces at her and she just gives that million dollar smile. It is amazing how little girls just wrap themselves around their daddies pinky finger. I can honestly say that our marriage is stronger through all of this. We are able to sleep in the same bed maybe one night a week, sometimes two, and do not get to have a lot of one on one time, but we still communicate with each other and show each other we love each other in different ways. He has been my rock more so than anyone else. I know that it has been stressful on him having to work and come to the hospital without ever really having a break from stress, but he has handled it well, and God is going to bless him through this, I just know it.
I know this blog is extremely long, but I had a lot of things I wanted to say. Please remember us in your prayers. Steven and my parents will be flying out of Memphis on Saturday, September 8th and please pray for their saftey. My sister is leaving Pensacola on Tuesday, September 11th (ICK what a day to fly!) and me and MJ will be leaving sometime at the end of this week or over the weekend. We should know tomorrow the exact time and day. If you forget to pray for our travel saftey, PLEASE just remember to be in prayer all day for Macy Jane on Monday as she undergoes a heart catheterization and on Wednesday when she goes for her life threatening surgery. So many have been faithful prayer warriors and I firmly believe that that is what has gotten us this far. Thank you to all of my friends for your love and your support, it is not taken for granted.
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