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
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