Friday, October 19, 2007
Thursday Current mood:Blessed!
Ya'll I can't even put in to words how I am feeling right now. I received a box from one of my friends at work and in that little box were some VERY unexpected suprises. Janice put together some scrapbooking things for me to work on out here and enclosed a gift of clothes from one of my friends at work. Also, I opened up a cute envelope and was amazed at what I saw. Apparently, everyone at work donated gift cards to various places and sent them to us! I kid you not, there is over $900 in gift cards!!!!! Awesome cards to Target, Wal-Mart, Wal-Greens, Barnes and Noble, Borders, Bahama Breeze, Chilis, PF Changs, Mastercards!, STARBUCKS, applebees, and I just can't remember them all. I was SO shocked and just cried. Everyone has been so generous to us and I will never ever be able to say thank you enough. I hope everyone knows how much I appreciate everything that has been done for us and I do not take anything for granted. Also enclosed was a very cute homemade card that a lot of people that I work with signed. It was so nice to read all of the comments. It made me long to be back at work surrounded by people that I know love and care for all of us.
God has been so good to us. Over the past few weeks, I have had days where I have been extremely discouraged and just did not see God's purpose in what was going on with MJ. It seemed like she would take 2 steps forward and 5 steps backwards in a day's time period. We found out on Tuesday that the cardiologists here were going to push for Dr. Hanley to change out MJs shunt size because they couldn't manage her medically anymore, it was time for another surgical intervention.
On Wednesday morning, I was walking in to the hospital and Steve was texting me that they were there to take MJ to the OR. It was only 8:30 in the morning! I ran my butt in there, but thankfully I had 30 minutes to spend with her. She was awake and kicking and smiling and making funny faces at us. We said goodbye at 9am and I honestly just stopped in the hallway and broke down. That was the third time I had to take her to the OR doors in her life and kiss her goodbye, unknowing at the time what the outcome would be. It is so hard to hand your baby over for a life threatening surgery. Words just do not describe it. I hope none of you ever have to go through even a day of what we have been through and I wouldn't wish this on anyone, not even my worst enemy. (Well, maybe Maryanne at work........just kidding! )
We sat in the waiting room and tried to pass the time. Finally at 12 we received a call saying that they had about 45 minutes left in the OR and that Dr. Hanley would be out to talk with us soon. Well, at 12:35 the physician's assistant, Amy, came out and said "Well, I have some good news for you". I immediately thought that she was going to say surgery went well and her arteries look great. NOPE! She said that Dr. Hanley clipped her shunt to make it smaller and her pulmonary pressures went down to normal and he decided at that time that he wanted to go ahead and do her complete cardiac repair. My immediate reaction was "Are you serious?" She looked at me and said yes, I am serious. They are underway now and it will take about 4 more hours.
I teared up talking to her and me and my mom just started crying when she left. I was finally able to cry tears of joy! God heard our prayers that we say about a million times a day and all of the prayers of people all over the world for Macy Jane and finally, in HIS timing, He blessed my little girl. The receptionist came over to make sure that we were crying happy tears, not sad.
Dr. Hanley came out just before 4 and said that they were all done and that her surgery went well, really well. Better than he expected. He explained everything that he did and said that her numbers were some of the best that he had ever seen!!! We were shocked to say the least. We did not get to see MJ until about 5:30pm and I can't begin to describe to ya'll how she looked. She was PINK PINK PINK and she was warm. Her hands and legs had always been pretty cold due to limited blood flow, but now she looks just like any normal baby. No more blue baby!!!!! I am still amazed when I go in to see her, I never realized how blue she really was.
She was on the ventilator and has 2 chest tubes and pacing wires coming out of two different spots, and of course her chest incision. Inevitably she was on about 8 or 9 different drips. Today, they weaned the ventilator and extubated her around 3:30pm. I was amazed that they did it so fast, I mean she just had open heart surgery YESTERDAY!!!!! She is doing really well now. She is starting to swell a lot more, especially in her eyelids, but over the next few days that will be better. They are slowing weaning the amount of oxygen that she is on, but they have to do everything slowly as to not upset/aggravate all of the changes inside of her.
Her oxygen levels are 96-100% and it is so wierd because noone is freaking out about it. Before, when they were that high, we knew that she was getting way too much blood flow to her lungs and not her body. Not anymore! I am still trying to get used to that little minor detail.
It is just so amazing to me how optimistic everyone is out here. The doctors that we talked to all said that they think she is going to do very well long term and that I better watch out because she is one fiesty little girl! She is kicking and squirming and VERY hard to keep comfortable and in one spot. I guess it's the red hair
I called her cardiologist back home today and he was kind of shocked sounding. I wasn't sure if he was shocked because they did the complete repair or because things were going so well for her. I may have interpreted wrong, but it almost seemed like he was trying to bring me down to reality by pointing out the things that could go wrong etc etc. I told him about her orginally having too much blood flow to the lungs and he was like well that could be bad for now and good in the long run or good now and bad in the long run. I told him that Dr. Hanley and the cardiologists here said that that was a GOOD sign for long term, as I posted before. I kindly told him that and he sounded amazed. They don't see her type of defect too much in Memphis and if you don't deal with it every week like they do out here, diagnoses like this one seem hopeless. In fact, we weren't given too much hope by the doctors back home. It was all talk like "well, we hope the outcome is good.......but then they would list a number of things that could happen adversly." I just thank God for people like Dr. Hanley that are constantly researching and doing research on these special babies and finding ways to give them normal, long lives.
Now to reality. No, Macy Jane is not going to be better overnight and no we will not be home in the next couple of weeks. We will have to have echocardiograms of her heart every 3 months for about a year and then maybe yearly depending on how she is doing. We have to be careful to watch her right ventricle, to make sure that it is still functioning well. She will eventually outgrow the conduit that was placed in her heart that connects everything and will require additional open heart surgeries to replace that. That could be anywhere from 6 months to 13 years with an average being 2-5 years from repair. We also have to watch her new pulmonary arteries. They had to use a lot of patches which are made from a synthetic material and over time they could narrow and need expanding. There are many things that we will have to do to maintain her healthy status, but we can definately do that.
Also, she has pretty much been on a breathing machine for about 2 months of her life and of course the rest has been spent laying on her back in a hospital bed or being held. She has never been able to have her "Tummy Time" or to enjoy experiences where she will start to coo and make noises. She lost her head control after the last surgery, and she hasn't had a drop of milk in her mouth since she was 5 weeks old. She will require lots and lots of physical and occupational therapy and even still may be delayed, but none of that matters. I mean it does, but I don't care about that. She is here in this world with us and at least we have her here so that we can face all of these challenges, together as a family. Steve and I and our entire family are committed to giving Macy Jane everything we can support wise and will work with her on a daily basis to get her caught up to where she needs to be. It may take years, but with the Lord's help, we will make it. My favorite Bible verse has always been Philippians 4:13 which says " I can do all things through Christ which strengtheneth me" God has given us the patience, knowledge, peace, grace and strength to get through all of this and as long as we keep serving Him, He is not going to forsake us.
Will we ever see the purpose behind all of this? Maybe not, but I can tell you that there is one. God doesn't do anything without having a perfect plan in place and purpose behind it. Eventhough we don't always understand, He does and we rely in that. People all over ask me how in the world we are handling all of this and that they would be basketcases. Well, no. God gives us what we need in a time of need and that honestly has been what sustains us. Without having Him to rely on, I would be a basketcase and probably picking up some pretty bad habits. I can only thank Him for his blessings and His mercy. He has been so good to us and I can't wait to share with Macy Jane someday about how she is such a MIRACLE and mommy and daddy's pride and joy.
I thank everyone for all of the support. Whether it is emotionally, physically, or financially. Everything means so much to us, ya'll will never know how my heart feels. I only hope that I can be a blessing to others like ya'll have been to me.
Please continue to pray for Macy Jane. She has a lot of things to overcome still and one of those is being calm. She is very hard to control right now because she is in pain, and no doubt scared and worn out. She gets restless and it takes a lot of medicine to make her comfortable and not crying. Please pray that her body will heal properly and that her pain will be erased and that she will rest well without requiring a lot of meds. Also, we have the battle of attempting to feed her through her g-tube again. It didn't go so well over the last few weeks and the docs here are hoping it was because she wasn't getting enough blood flow to her intestines/stomach. We will see in a few days whether or not she still gags and retches and throws up. Please pray that she won't. If so, that could delay our time in coming home. Also please pray that infection would stay away. So far she hasn't gotten any infection in her blood, only in that one chest tube site. Amazing considering all that she has been through.
Once again, thank you all so much for everything. I will continue to update as time allows. Now that she is extubated I spend most of my time tending to her needs and trying to rest in between all of that. I know ya'll understand so no news is good news
Much love,
The Happiest Mommy On Earth
Friday, October 19, 2007
Wednesday, October 17, 2007
Wednesday, October 17, 2007
GREAT NEWS!! (for a change haha) Current mood: chipper
Hey everyone. We found out at 0830 this morning that Macy Jane was going to the OR at 9am to have the shunt that was placed in her heart during the first surgery narrowed because too much blood flow was going to her lungs.
The doctors have been trying for weeks to convince Dr. Hanley that the shunt needed to be made smaller, but he wanted them to manage it medically. They tried and it didn't work, so in cath conference this morning it was decided that she would go to the OR first thing this am.
Well, the physicians assistant told Steve that our countdown to the final repair would be 3-6 months from TODAY's surgery. Grrrrr 6 more months out here at least.
However, the physician's assistant just came out to tell us that she had some good news. They are DOING MACY'S FULL REPAIR!!!!!!! Once he opened her chest and clipped the shunt size the pulmonary pressures went dramatically down and Dr. Hanley felt that now was the time to do the full repair!!!!!! When she told me that I said "Are you SERIOUS?!!" I am in shock, but I am SO thanking the Lord that everything is going along just fine. We were not seeing the light at the end of the tunnel, but now we are! Thank the Lord.
This means that when she recovers from this surgery, we should be able to take our little miracle home with us! HOME! Wow. I have forgotten what that is
Please keep praying, MJ has at least 4 more hours in surgery and she has to go on the bypass machine and her heart stopped, but God has brought us this far, He will see us through in His timing. It has been so hard waiting on the Lord, but it is SO worth it to see everything coming together.
Thanks for praying, it means everything.
Much Love
Bethany
GREAT NEWS!! (for a change haha) Current mood: chipper
Hey everyone. We found out at 0830 this morning that Macy Jane was going to the OR at 9am to have the shunt that was placed in her heart during the first surgery narrowed because too much blood flow was going to her lungs.
The doctors have been trying for weeks to convince Dr. Hanley that the shunt needed to be made smaller, but he wanted them to manage it medically. They tried and it didn't work, so in cath conference this morning it was decided that she would go to the OR first thing this am.
Well, the physicians assistant told Steve that our countdown to the final repair would be 3-6 months from TODAY's surgery. Grrrrr 6 more months out here at least.
However, the physician's assistant just came out to tell us that she had some good news. They are DOING MACY'S FULL REPAIR!!!!!!! Once he opened her chest and clipped the shunt size the pulmonary pressures went dramatically down and Dr. Hanley felt that now was the time to do the full repair!!!!!! When she told me that I said "Are you SERIOUS?!!" I am in shock, but I am SO thanking the Lord that everything is going along just fine. We were not seeing the light at the end of the tunnel, but now we are! Thank the Lord.
This means that when she recovers from this surgery, we should be able to take our little miracle home with us! HOME! Wow. I have forgotten what that is
Please keep praying, MJ has at least 4 more hours in surgery and she has to go on the bypass machine and her heart stopped, but God has brought us this far, He will see us through in His timing. It has been so hard waiting on the Lord, but it is SO worth it to see everything coming together.
Thanks for praying, it means everything.
Much Love
Bethany
Sunday, October 14, 2007
Sunday, October 14, 2007
Sunday October 14th Current mood: creative
It's been a while since I last updated. Not too too much has changed since then. Well, nothing too bad I should say!
Since yesterday, MJ has been smiling and making some noises like her old self again. She now focuses on us and smiles when she sees us or we say something that she thinks is funny. It has taken 2 weeks to get her back to normal mentally like she was pre-surgery. I was beginning to think that maybe something was wrong because she would not focus on us and would not be still for longer than a second, literally. She is kicking her legs up in the air and kicking her animals that dangle above her head. We are still working on getting her head control back. After laying sedated for almost 3 weeks, her muscle tone is.....how shall I put it? ZILCH?!? That's okay though, this is something that we can work on. Obviously she isn't going to be crawling at the normal age, walking, or talking (probably) but none of that matters to me. I have my precious little miracle baby with me in this world and we can overcome anything with a little bit of time, or as she has shown us A LOT of time
We had a scare at the beginning of the week. She had some blood cultures that were drawn from her arterial line come back positive for Staph. Icky! Yuck! The last thing she needed. However, they have done the blood cultures every day since then from her arterial line and her Broviac (central line) and so far there is not any sign of the staph in her blood. However, she did have a swab done of one of her chest tube sites and it came back positive for staph. She is on antibiotics for that and she is also having some ointment applied to the sites. She had some puss come out of her sternal incision, but they started putting Bacitracin on that as well, as so far it is looking better.
Please just continue to pray that everything will continue to go well. If things keep looking up, we might be able to go to a room maybe this week. She is still gagging but has only thrown up about a cc in the past week. They are slowly increasing her feedings and by that I mean 1 cc a day!!! Today is her last day on the TPN--woo-hoo. That stuff can be hard on your liver, so I am always happy to get her off of that.
Remember I said the people out here are rude? I have a little story to share with you. (perhaps I shouldn't say everyone is rude, there are a few nice non-snobby souls out here). The other night I was getting gas at a Shell station. I had called one of my best friends to chat because I was really upset and stressed and was sitting at the gas pump in my car talking. It was 10:30 at night and there are literally 10 gas pumps at this particular station. Well, I am chatting away and this woman walks up to my car banging on the window. She is screaming at me in Spanish! I opened the door to see what she wanted and she was cussing me out and telling me to move my car so that she could get gas in her car. I was like what the heck is this woman's problem?! There are 9 other pumps available!!! She kept screaming and cussing so I shut the door and went around to the pump across from where I was. At first I thought she worked there and was pissed that I was just sitting there then I figured out that she wasn't. So therefore when I had pumped my gas, cut my phone call short, and paid I hopped in my car and said some not so nice things to her as I left. I swear I don't know what her problem was but she thoroughly pissed me off.
We have had an awesome nurse Brian for several days in a row now. He is by far our favorite nurse here!! He acts like he cares about his job and takes really good care of MJ. The other day he put her halloween pants and socks on her and her cute little hat. I will try to post some pics of that this week sometime. He mentioned that we needed to get her some halloween blankets to lay on. Well, that got my interest and today I went to Jo-Ann's fabrics and picked out 2 halloween fabrics to make blankets out of. (HAHA no I am not making them, my mom is ) I also found some flannel material that I couldn't resist. I bought some tinkerbell, care bears, and Raggedy Ann and Andy. They are soo cute, in my opinion. I also bought some stuff to make MJ a name sign for her bed. She now has a Tinkerbell name sign!!! I can't wait to be able to scrapbook again. I realized today how much I missed it.
Well, I think that is all for now. Anyone have any good jokes to send me? Laughter makes me feel better and I would like to hear some jokes. So much serious stuff goes on every day that I cherish the times we are able to laugh. Thankfully, MJ has had us smiling a lot lately.
Oh yeah, before I forget. On top of thinking that MJ had Staph, we had to deal with money this week. We found out that Macy Jane has maybe 2 weeks left on her insurance. Yep, she's reached her max of 2 million in 5 months basically. The reason for that is this. Guess how much it costs per day out here. Come on guess. HAHA, you weren't even close. $20,000 yep, that's right twenty thousand dollars a day! Unfreaking believable. The reason it is so expensive per the insurance lady is that we are paying for all of the deadbeats in the country that rely on the government for insurance and money instead of getting jobs themselves. Grrrr.....we all know how I feel about that. Anyways, we were thinking oh great! Steve doesn't have time to get a job out here before her insurance policy lapses and we are going to be stuck with hundreds of thousands of dollars in medical bills.
Well, Monday I filled out an application for Social Security for MJ. I had an appointment on Friday with them and found out some good information. Pretty much by law, if you have a child that has been in the hospital for at least 30 days consecutively and there is no insurance left, they will pay the hospital bill while she is in the hospital without looking at our income (thank God because even with Steve working, we still make too much money---according to them) Once she is discharged, we have the disability coverage for the remainder of that month, but we have to apply for it again and they look at our income at that point.
I was pretty upset about her private insurance lapsing because we really do not want to have the government breathing down our necks forever telling us how much money we can make. If we were on SSI we could not ever have more than 3,000 dollars to our name and we would have to live paycheck to paycheck. However, I called my dad one day bawling and being the wonderful dad that he is, he called some of his contacts. He gave me the name of a woman named Theresa at an insurance company and told me to call her. If anyone knew the answers to our questions, she would. I called her and explained our situation and our need to keep her on private insurance. She gave me the best news possible! Whenever we have an insurance policy that reaches its maximum we have 63 days to get her on another insurance policy before they consider it a lapse. So now Steve has a little time to find a job without us stressing out. God works in mysterious ways and I am so thankful for the 63 day law. Of course, when we get back to Memphis the job situation is up in the air. But the beauty of all of this is that Steve and I are in a wonderful profession where we can job hop and have insurance without too much difficulty. If we have to move, we will. Florida is sounding nice again, haha. It takes about 30 days to get her approved for SSI, but they will backpay since I applied on the 11th officially. Yay, I don't have to file bankruptcy down the road (well, yet anyways haha).
Okay, that's it for real now. I hope everyone is doing well. Please continue to keep us in your prayers!!
Much Love
Bethany
Sunday October 14th Current mood: creative
It's been a while since I last updated. Not too too much has changed since then. Well, nothing too bad I should say!
Since yesterday, MJ has been smiling and making some noises like her old self again. She now focuses on us and smiles when she sees us or we say something that she thinks is funny. It has taken 2 weeks to get her back to normal mentally like she was pre-surgery. I was beginning to think that maybe something was wrong because she would not focus on us and would not be still for longer than a second, literally. She is kicking her legs up in the air and kicking her animals that dangle above her head. We are still working on getting her head control back. After laying sedated for almost 3 weeks, her muscle tone is.....how shall I put it? ZILCH?!? That's okay though, this is something that we can work on. Obviously she isn't going to be crawling at the normal age, walking, or talking (probably) but none of that matters to me. I have my precious little miracle baby with me in this world and we can overcome anything with a little bit of time, or as she has shown us A LOT of time
We had a scare at the beginning of the week. She had some blood cultures that were drawn from her arterial line come back positive for Staph. Icky! Yuck! The last thing she needed. However, they have done the blood cultures every day since then from her arterial line and her Broviac (central line) and so far there is not any sign of the staph in her blood. However, she did have a swab done of one of her chest tube sites and it came back positive for staph. She is on antibiotics for that and she is also having some ointment applied to the sites. She had some puss come out of her sternal incision, but they started putting Bacitracin on that as well, as so far it is looking better.
Please just continue to pray that everything will continue to go well. If things keep looking up, we might be able to go to a room maybe this week. She is still gagging but has only thrown up about a cc in the past week. They are slowly increasing her feedings and by that I mean 1 cc a day!!! Today is her last day on the TPN--woo-hoo. That stuff can be hard on your liver, so I am always happy to get her off of that.
Remember I said the people out here are rude? I have a little story to share with you. (perhaps I shouldn't say everyone is rude, there are a few nice non-snobby souls out here). The other night I was getting gas at a Shell station. I had called one of my best friends to chat because I was really upset and stressed and was sitting at the gas pump in my car talking. It was 10:30 at night and there are literally 10 gas pumps at this particular station. Well, I am chatting away and this woman walks up to my car banging on the window. She is screaming at me in Spanish! I opened the door to see what she wanted and she was cussing me out and telling me to move my car so that she could get gas in her car. I was like what the heck is this woman's problem?! There are 9 other pumps available!!! She kept screaming and cussing so I shut the door and went around to the pump across from where I was. At first I thought she worked there and was pissed that I was just sitting there then I figured out that she wasn't. So therefore when I had pumped my gas, cut my phone call short, and paid I hopped in my car and said some not so nice things to her as I left. I swear I don't know what her problem was but she thoroughly pissed me off.
We have had an awesome nurse Brian for several days in a row now. He is by far our favorite nurse here!! He acts like he cares about his job and takes really good care of MJ. The other day he put her halloween pants and socks on her and her cute little hat. I will try to post some pics of that this week sometime. He mentioned that we needed to get her some halloween blankets to lay on. Well, that got my interest and today I went to Jo-Ann's fabrics and picked out 2 halloween fabrics to make blankets out of. (HAHA no I am not making them, my mom is ) I also found some flannel material that I couldn't resist. I bought some tinkerbell, care bears, and Raggedy Ann and Andy. They are soo cute, in my opinion. I also bought some stuff to make MJ a name sign for her bed. She now has a Tinkerbell name sign!!! I can't wait to be able to scrapbook again. I realized today how much I missed it.
Well, I think that is all for now. Anyone have any good jokes to send me? Laughter makes me feel better and I would like to hear some jokes. So much serious stuff goes on every day that I cherish the times we are able to laugh. Thankfully, MJ has had us smiling a lot lately.
Oh yeah, before I forget. On top of thinking that MJ had Staph, we had to deal with money this week. We found out that Macy Jane has maybe 2 weeks left on her insurance. Yep, she's reached her max of 2 million in 5 months basically. The reason for that is this. Guess how much it costs per day out here. Come on guess. HAHA, you weren't even close. $20,000 yep, that's right twenty thousand dollars a day! Unfreaking believable. The reason it is so expensive per the insurance lady is that we are paying for all of the deadbeats in the country that rely on the government for insurance and money instead of getting jobs themselves. Grrrr.....we all know how I feel about that. Anyways, we were thinking oh great! Steve doesn't have time to get a job out here before her insurance policy lapses and we are going to be stuck with hundreds of thousands of dollars in medical bills.
Well, Monday I filled out an application for Social Security for MJ. I had an appointment on Friday with them and found out some good information. Pretty much by law, if you have a child that has been in the hospital for at least 30 days consecutively and there is no insurance left, they will pay the hospital bill while she is in the hospital without looking at our income (thank God because even with Steve working, we still make too much money---according to them) Once she is discharged, we have the disability coverage for the remainder of that month, but we have to apply for it again and they look at our income at that point.
I was pretty upset about her private insurance lapsing because we really do not want to have the government breathing down our necks forever telling us how much money we can make. If we were on SSI we could not ever have more than 3,000 dollars to our name and we would have to live paycheck to paycheck. However, I called my dad one day bawling and being the wonderful dad that he is, he called some of his contacts. He gave me the name of a woman named Theresa at an insurance company and told me to call her. If anyone knew the answers to our questions, she would. I called her and explained our situation and our need to keep her on private insurance. She gave me the best news possible! Whenever we have an insurance policy that reaches its maximum we have 63 days to get her on another insurance policy before they consider it a lapse. So now Steve has a little time to find a job without us stressing out. God works in mysterious ways and I am so thankful for the 63 day law. Of course, when we get back to Memphis the job situation is up in the air. But the beauty of all of this is that Steve and I are in a wonderful profession where we can job hop and have insurance without too much difficulty. If we have to move, we will. Florida is sounding nice again, haha. It takes about 30 days to get her approved for SSI, but they will backpay since I applied on the 11th officially. Yay, I don't have to file bankruptcy down the road (well, yet anyways haha).
Okay, that's it for real now. I hope everyone is doing well. Please continue to keep us in your prayers!!
Much Love
Bethany
Saturday, October 6, 2007
Saturday, October 06, 2007
The Princess Macy Jane Current mood: sleepy
Macy Jane smiled for me tonight! It wasn't her usual big smile, but it was a smile nonetheless. I have been waiting for that smile for over 3 weeks. When she smiles that usually means that she feels good. That makes me feel better knowing that she isn't hurting.
She did not sleep very much last night and today. Her dayshift nurse asked me if she could give her something to sleep and I had to tell her no. Why would you give a baby something to make her sleep when she is perfectly content to be awake and watching television? I could understand if she was fussy and dropping her sats, but she wasn't. Needless to say she didn't giver her anything. She finally drifted off a few hours ago and woke up a few times, but I just put her on her left side and unrestrained her right arm, and whaddya know? She curled up and went right to sleep like a big girl!!
She has been on room air for two days now and her sats are 92% at the moment. They are actually too high according to her doctors! The other day (I may have mentioned this before, if so please excuse my overstressed brain) we were thinking that she was flushed looking and then it dawned on me. We are so used to seeing her pale and bluish, and now that she is pink like a normal baby, we can't get used to it!
Everyone comes by to see how Miss Macy Jane is doing. She has everyone smitten, just like she did at LeBonheur. Everybody keeps saying how beautiful she is, and as a proud mother I can't help but agree! I have decided that Lord willing, I am going to dress her up for halloween in her little outfit I bought her at Target. It isn't a costume, it's a really cute shirt that has a flying witch on it, a hat that is a black cat, socks that have halloween characters on it, witch slippers, and black pants with halloween stuff on it. She is going to be cute. I can only do this if she is out of ICU or her arterial line is removed. So pray for that!
In other good news, my dad, sister, brother and sister-in-law are flying out here for the whole week of Thanksgiving!!! I am so excited. When we found out that MJ would have to be out here until her second surgery, I cried. The first reason was because I miss home and want to be able to give MJ a normal life, AT HOME, and the second was because I would not be home for the holidays. The holidays are a big deal in my family and everyone always gets together. I am so thankful that everyone is going to be able to fly out here! God has blessed us.
Something that I need ya'll to pray about is insurance. MJ has a 2 million dollar policy and as of October 1st, she has used 1.3 million. YIKES! She was not even at $300,000 when we came out here and within 3 weeks she has used one million dollars. Because of this, we are applying for SSI for her and also to Tenncare. If she gets SSI then she will automatically have Tenncare. However, we think that we make too much money and have too much in our bank accounts, but nonetheless we have to try. Once her insurance money is gone, they should have to cover her, but then again they may not. Please pray that we will get her on one of them!! If not, Steve and I will be stuck with A LOT of bills that we cannot ever pay off, especially with another major surgery in the near future. God will provide, He always has and He always will.
Steve may get a job as a nurse out here. He really wants to be here for me and MJ and he can probably get an assignment. Brian, MJs favorite nurse, told us about a way to make some fast cash because nurses in San Francisco are going on strike as of the 10th. However, Steve has a lot of paper work to get done between now and then. Pray that it works out because he could make a LOT of money in just a few short weeks and it would help us out greatly. Again, God will work out all of the details. His personal leave at Baptist ends in February and if he is without a job because we are out here, then so be it. They should rehire him, but if not that will be God's way of telling us that it was time for him to move on anyways. That place is supposedly going down the tubes anyways, so it might be better. Who knows! That is a long way off from now and I certainly hope that we are home by then.
Tonight we all loaded up in our nice little piece of crap rental car and went searching for a pizza place. We found one and it was SO yummy. Steve was in heaven because they had an arcade. He is such a sucker for them and was like watching a kid at Christmas opening packages. He will probably kill me for saying that, haha. Oh-well.
Well, it's almost 0430 and I am a little tired. Think I will go and get some zzzz's. Oh yeah, my sister got MJ the cutest halloween, Thanksgiving, and Christmas, and winter clothes at Carter's the other day. She is going to look SO cute in them. Remember me talking about MJ looking emaciated? Well, she looks like her old self again. She was so dehydrated before that she looked all drawn up and sunken. She weighs over 10 pounds again and seems to be doing well.
Last but not least, people have been asking for our address to send us care packages. The address is:
Ronald McDonald House
c/o Steven & Bethany Wiles--M208
520 Sand Hill Road
Palo Alto, California
94304
Hope everyone is doing well. What's the weather like where you are? A few hours north of here it is snowing and it is in the 40s here tonight! BRRRRRRR.....I have ice forming on me now. Haha
Much love,
Bethany
The Princess Macy Jane Current mood: sleepy
Macy Jane smiled for me tonight! It wasn't her usual big smile, but it was a smile nonetheless. I have been waiting for that smile for over 3 weeks. When she smiles that usually means that she feels good. That makes me feel better knowing that she isn't hurting.
She did not sleep very much last night and today. Her dayshift nurse asked me if she could give her something to sleep and I had to tell her no. Why would you give a baby something to make her sleep when she is perfectly content to be awake and watching television? I could understand if she was fussy and dropping her sats, but she wasn't. Needless to say she didn't giver her anything. She finally drifted off a few hours ago and woke up a few times, but I just put her on her left side and unrestrained her right arm, and whaddya know? She curled up and went right to sleep like a big girl!!
She has been on room air for two days now and her sats are 92% at the moment. They are actually too high according to her doctors! The other day (I may have mentioned this before, if so please excuse my overstressed brain) we were thinking that she was flushed looking and then it dawned on me. We are so used to seeing her pale and bluish, and now that she is pink like a normal baby, we can't get used to it!
Everyone comes by to see how Miss Macy Jane is doing. She has everyone smitten, just like she did at LeBonheur. Everybody keeps saying how beautiful she is, and as a proud mother I can't help but agree! I have decided that Lord willing, I am going to dress her up for halloween in her little outfit I bought her at Target. It isn't a costume, it's a really cute shirt that has a flying witch on it, a hat that is a black cat, socks that have halloween characters on it, witch slippers, and black pants with halloween stuff on it. She is going to be cute. I can only do this if she is out of ICU or her arterial line is removed. So pray for that!
In other good news, my dad, sister, brother and sister-in-law are flying out here for the whole week of Thanksgiving!!! I am so excited. When we found out that MJ would have to be out here until her second surgery, I cried. The first reason was because I miss home and want to be able to give MJ a normal life, AT HOME, and the second was because I would not be home for the holidays. The holidays are a big deal in my family and everyone always gets together. I am so thankful that everyone is going to be able to fly out here! God has blessed us.
Something that I need ya'll to pray about is insurance. MJ has a 2 million dollar policy and as of October 1st, she has used 1.3 million. YIKES! She was not even at $300,000 when we came out here and within 3 weeks she has used one million dollars. Because of this, we are applying for SSI for her and also to Tenncare. If she gets SSI then she will automatically have Tenncare. However, we think that we make too much money and have too much in our bank accounts, but nonetheless we have to try. Once her insurance money is gone, they should have to cover her, but then again they may not. Please pray that we will get her on one of them!! If not, Steve and I will be stuck with A LOT of bills that we cannot ever pay off, especially with another major surgery in the near future. God will provide, He always has and He always will.
Steve may get a job as a nurse out here. He really wants to be here for me and MJ and he can probably get an assignment. Brian, MJs favorite nurse, told us about a way to make some fast cash because nurses in San Francisco are going on strike as of the 10th. However, Steve has a lot of paper work to get done between now and then. Pray that it works out because he could make a LOT of money in just a few short weeks and it would help us out greatly. Again, God will work out all of the details. His personal leave at Baptist ends in February and if he is without a job because we are out here, then so be it. They should rehire him, but if not that will be God's way of telling us that it was time for him to move on anyways. That place is supposedly going down the tubes anyways, so it might be better. Who knows! That is a long way off from now and I certainly hope that we are home by then.
Tonight we all loaded up in our nice little piece of crap rental car and went searching for a pizza place. We found one and it was SO yummy. Steve was in heaven because they had an arcade. He is such a sucker for them and was like watching a kid at Christmas opening packages. He will probably kill me for saying that, haha. Oh-well.
Well, it's almost 0430 and I am a little tired. Think I will go and get some zzzz's. Oh yeah, my sister got MJ the cutest halloween, Thanksgiving, and Christmas, and winter clothes at Carter's the other day. She is going to look SO cute in them. Remember me talking about MJ looking emaciated? Well, she looks like her old self again. She was so dehydrated before that she looked all drawn up and sunken. She weighs over 10 pounds again and seems to be doing well.
Last but not least, people have been asking for our address to send us care packages. The address is:
Ronald McDonald House
c/o Steven & Bethany Wiles--M208
520 Sand Hill Road
Palo Alto, California
94304
Hope everyone is doing well. What's the weather like where you are? A few hours north of here it is snowing and it is in the 40s here tonight! BRRRRRRR.....I have ice forming on me now. Haha
Much love,
Bethany
Thursday, October 4, 2007
Thursday, October 04, 2007
Wednesday Current mood: crushed
Tonight I am both happy and crushed at the same time. First the good news and the blessings of the Lord: Macy Jane is off of the ventilator once again, on no oxygen (on 2 liters of flow just to stimulate her to breathe deeply, but should be off of that by the morning) and is more comfortable than last time. She loves her pacifier and the Baby Einstein channel. I do not think she has figured out who we are yet, and appears to have a few lasting effects of the withdrawals, but overall much better.
Now onto why I am a little upset. My dreams of having Macy Jane at home for Halloween were squashed in about a 2 minute conversation today. Dr. Hanley, at this point, wants to manage her extra blood flow with medication. They started her on Captopril yesterday to help even out the blood flow in her body. He does not feel that she is ready for surgery and the Cardiologist told me today when I asked him point blank, that Macy Jane would not be going home or back to LeBonheur until she has had her complete repair. I cried when he told me that. All of my hopes and dreams of getting a normal life back were shattered right then and there. Perhaps I should accept that this is my life for now. It is so hard though being away from family and friends. I think the Lord prepared all of us for the separation though because we didn't have a lot of visitors even when we were in Memphis so we kind of got used to it just being family around. It is different this time though because my dad isn't able to be here every night and my sister and brother and in-law siblings are not able to visit. However, the Lord has blessed me with a wonderful mother and husband that are here with me each day.
Oh how I had hoped to be able to dress MJ up for Halloween and have a normal Thanksgiving and Christmas. I do not know what the plan is for her surgery, originally the repair would be done in 3-6 months. However, the cardiologist told me this morning that the surgery would probably be sooner than 6 months. Perhaps I should set a new goal of being home by Christmas. However, I do not want to be disappointed again so I may just sit back and relax and just see what the Lord has planned.
My sister, God bless her, is always willing to take my phone calls in the middle of thenight. The 2 hour time difference is hard to get used to. I will send a text at 10pm and then realize that it is midnight there. However, tonight I needed to talk to her and get her always useful insight. One thing that she pointed out to me is this: God has blessed us more than we even know or can fathom and the fact that we still have Macy Jane in our earthly lives is a HUGE blessing and gift from God. He has plans for this little girl, it is obvious. Yes, it is frustrating that we keep hitting road blocks, but everything is happening for a reason. I guess God knew that in my heart I was fearful of taking MJ to our house and something happending to her and it taking us 45 minutes to get to the hospital. Now I don't have to worry about that. Next time that she sees home, she should be able to stay there for a long time and be pretty much healthy.
The docs here are hard to understand at times. The purpose of the heart cath was to see if her heart was part of the problem with her metabolic acidosis. Well, they supposedly got their answer: 4 times the amount of blood going to her lungs than her body. Well, now they are wondering if she has a problem with her metabolism and some other things. Pretty much all of the things that she was tested for at birth, a long with her PKU. They consulted a geneticist to see her. He came around this afternoon and said that based off of her labwork here he didnt see a problem, but would check to see what Tennessee checks for in their newborn screening. I told him that everything she had checked before, checked out okay. They will get back to us as to what tests there were left to do. Pray that everything is normal. Everything so far has been related to her heart defects that remain, but it seems like the docs are covering their butts and ruling every little thing out. The geneticist was suprised that MJ had never had a renal (kidney) utrasound before, as kidney problems are common in kids with DiGeorge. I told himi that so far nothing has ever been wrong with her kidneys and that in the womb they looked at her kidneys and they were fine. However at some point they are going to check them for their peace of mind. Fine by us, lets make sure everything works while we are here and then if something is wrong let's get it taken care of.
Please pray as we have many decisions to make in the next few days and weeks. It all revolves around what Steve should do for a job. The question now is when is MJs complete repair supposedly going to take place and in the mean time does Steve go back to Memphis to work or does he try to get an assignment out here. I would love to have him out here as he is the other half of me and I need him, but I also know that we have to do what is right for our family, regardless of my feelings. Please pray for the Lord's guidance. We want to make the right decision.
Well, I guess I will go and read a book for now. MJ is resting fairly well tonight. she wakes up when her pacifier falls out which is a lot since she hasn't quite figured out the suck breathe pattern yet. It'll come though.
Please pray that MJ will not have any more setbacks. I do not mind staying out here, I would just like to be able to move to a regular room so that I could sleep at her bedside and hold her whenever I want to and try to give her a most normal life as possible.
Much love
Bethany
Wednesday Current mood: crushed
Tonight I am both happy and crushed at the same time. First the good news and the blessings of the Lord: Macy Jane is off of the ventilator once again, on no oxygen (on 2 liters of flow just to stimulate her to breathe deeply, but should be off of that by the morning) and is more comfortable than last time. She loves her pacifier and the Baby Einstein channel. I do not think she has figured out who we are yet, and appears to have a few lasting effects of the withdrawals, but overall much better.
Now onto why I am a little upset. My dreams of having Macy Jane at home for Halloween were squashed in about a 2 minute conversation today. Dr. Hanley, at this point, wants to manage her extra blood flow with medication. They started her on Captopril yesterday to help even out the blood flow in her body. He does not feel that she is ready for surgery and the Cardiologist told me today when I asked him point blank, that Macy Jane would not be going home or back to LeBonheur until she has had her complete repair. I cried when he told me that. All of my hopes and dreams of getting a normal life back were shattered right then and there. Perhaps I should accept that this is my life for now. It is so hard though being away from family and friends. I think the Lord prepared all of us for the separation though because we didn't have a lot of visitors even when we were in Memphis so we kind of got used to it just being family around. It is different this time though because my dad isn't able to be here every night and my sister and brother and in-law siblings are not able to visit. However, the Lord has blessed me with a wonderful mother and husband that are here with me each day.
Oh how I had hoped to be able to dress MJ up for Halloween and have a normal Thanksgiving and Christmas. I do not know what the plan is for her surgery, originally the repair would be done in 3-6 months. However, the cardiologist told me this morning that the surgery would probably be sooner than 6 months. Perhaps I should set a new goal of being home by Christmas. However, I do not want to be disappointed again so I may just sit back and relax and just see what the Lord has planned.
My sister, God bless her, is always willing to take my phone calls in the middle of thenight. The 2 hour time difference is hard to get used to. I will send a text at 10pm and then realize that it is midnight there. However, tonight I needed to talk to her and get her always useful insight. One thing that she pointed out to me is this: God has blessed us more than we even know or can fathom and the fact that we still have Macy Jane in our earthly lives is a HUGE blessing and gift from God. He has plans for this little girl, it is obvious. Yes, it is frustrating that we keep hitting road blocks, but everything is happening for a reason. I guess God knew that in my heart I was fearful of taking MJ to our house and something happending to her and it taking us 45 minutes to get to the hospital. Now I don't have to worry about that. Next time that she sees home, she should be able to stay there for a long time and be pretty much healthy.
The docs here are hard to understand at times. The purpose of the heart cath was to see if her heart was part of the problem with her metabolic acidosis. Well, they supposedly got their answer: 4 times the amount of blood going to her lungs than her body. Well, now they are wondering if she has a problem with her metabolism and some other things. Pretty much all of the things that she was tested for at birth, a long with her PKU. They consulted a geneticist to see her. He came around this afternoon and said that based off of her labwork here he didnt see a problem, but would check to see what Tennessee checks for in their newborn screening. I told him that everything she had checked before, checked out okay. They will get back to us as to what tests there were left to do. Pray that everything is normal. Everything so far has been related to her heart defects that remain, but it seems like the docs are covering their butts and ruling every little thing out. The geneticist was suprised that MJ had never had a renal (kidney) utrasound before, as kidney problems are common in kids with DiGeorge. I told himi that so far nothing has ever been wrong with her kidneys and that in the womb they looked at her kidneys and they were fine. However at some point they are going to check them for their peace of mind. Fine by us, lets make sure everything works while we are here and then if something is wrong let's get it taken care of.
Please pray as we have many decisions to make in the next few days and weeks. It all revolves around what Steve should do for a job. The question now is when is MJs complete repair supposedly going to take place and in the mean time does Steve go back to Memphis to work or does he try to get an assignment out here. I would love to have him out here as he is the other half of me and I need him, but I also know that we have to do what is right for our family, regardless of my feelings. Please pray for the Lord's guidance. We want to make the right decision.
Well, I guess I will go and read a book for now. MJ is resting fairly well tonight. she wakes up when her pacifier falls out which is a lot since she hasn't quite figured out the suck breathe pattern yet. It'll come though.
Please pray that MJ will not have any more setbacks. I do not mind staying out here, I would just like to be able to move to a regular room so that I could sleep at her bedside and hold her whenever I want to and try to give her a most normal life as possible.
Much love
Bethany
Tuesday, October 2, 2007
Tuesday, October 02, 2007
A break from Updates for a change! Current mood: calm
I think I mentioned in a previous post that Steven bought me a Paula Deen book that is all about her life. I recommend that book to those people out there that love southern women and cooking southern dishes. She is absolutely hilarious and if I ever get out of this hellhole aka California I hope to someday visit her restaurant "The Lady & Sons" and "Uncle Bubba's" in Savannah Georgia. Her recipes are soo yummy too.
I also would love to share this recipe that my sister gave to me over the weekend, that we tried and LOVED.
Spread a package of softened cream cheese in a 9x13 pyrex dish. Shred about 4 chicken breasts on top of the cream cheese, add about a cup of hot wing sauce (any brand will do, depending on your favorite--ours is Hooters Hot Wing sauce sold at Wal-Mart and Kroger), on top of the sauce add an 8 ounce bottle of Hidden Valley Ranch Dressing, and then top the dish with lots of monterrey & colby jack cheeses. Bake it in the oven for 30 minutes on 350 and enjoy with your favorite chips. This dip is SO yummy!!!
I also have another book to recommend. It is called "Beneath a Southern Sky" by Deborah Raney. EXCELLENT book that I read today. I will just tell you a little about it. Basically a young woman and her husband are missionaries to a tribe in the jungle around Columbia, South America. Her husband is a medical doctor and is summoned to go to another village a couple of days away in a boat ride to help the people that are dying of an unknown illness. Well, days and weeks go by and no word from her husband. Finally word comes from the guides that her husband has been killed in a fire. Devastated she comes back the USA to live and discovers that she is pregnant with her dead husband's baby. She gives birth and meets a man at her workplace. Eventually they get married and have a baby. During her pregnancy, she receives a telegram that said that her husband Nathan had been found alive and would be returning to the states in a few days!!!!! Here she is thinking that her 1st husband is dead and she has remarried and is having another baby and her 1st daughter calls her 2nd husband daddy because he is the only one she has ever known. She has to make a decision of which man to stay married to!
I cannot imagine being in that situation!!! Gosh to have to choose between your 1st and 2nd husbands, loving both of them equally?!!! I think I would just, well I don't know what I would do! I highly recommend the book and I didn't give away a lot of details...basically just said what was on the back cover.
I am at the hospital still at the clock says 0326. I am listening to the ever constant beeping of the heart monitors. This is the ONLY hospital I have ever been in that turns the monitors on to wear each beat of the heart is turned in to an annoying beep on the monitor and there is a different noise for the oxygen saturation pulse! It sounds like someone is running a barcode over the scanner at walmart about 160 times a minute. Multiply that times 4 babies with each baby having 2 different beeps. I am going to hear these beeps for the rest of my life I think. I definately will NOT miss those annoying sounds
When my sister was in town, we went to Target and I finally found a Tinkerbell scrapbook that was big and a smaller one. I have been searching since before MJ was born for a TB one that was big and cute. I can't wait to get home and make a little extra money (extra money would be me actually going to work hehe) so that I can go to a scrapbook store and buy lots of cute scrapbooking stuff for little girls. Oh and develop the pictures that I have of MJ. I must have 1000 by now :) I STILL haven't received our professional pictures that we had done at the end of August. Hopefully something hasn't happened to them. As soon as MJ is all better, I will be taking her to a place in the mall called Lasting Impressions to have some REALLY good pics made. My friend Micah took her 2 year old there and got some really good pics for a pretty decent price.
Can you believe that no place around here has free wi-fi that is actually any good? So therefore I am not able to post pictures. I may email them to my sister and ask her to put them on my page and then I will rearrange them like I want. That's a good idea that I just had :) Hopefully she will be able to do it.
Well, that is all for now. I wanted to blog about something other than health information. Be sure to make that dip.....I promise it is very yummy!
A break from Updates for a change! Current mood: calm
I think I mentioned in a previous post that Steven bought me a Paula Deen book that is all about her life. I recommend that book to those people out there that love southern women and cooking southern dishes. She is absolutely hilarious and if I ever get out of this hellhole aka California I hope to someday visit her restaurant "The Lady & Sons" and "Uncle Bubba's" in Savannah Georgia. Her recipes are soo yummy too.
I also would love to share this recipe that my sister gave to me over the weekend, that we tried and LOVED.
Spread a package of softened cream cheese in a 9x13 pyrex dish. Shred about 4 chicken breasts on top of the cream cheese, add about a cup of hot wing sauce (any brand will do, depending on your favorite--ours is Hooters Hot Wing sauce sold at Wal-Mart and Kroger), on top of the sauce add an 8 ounce bottle of Hidden Valley Ranch Dressing, and then top the dish with lots of monterrey & colby jack cheeses. Bake it in the oven for 30 minutes on 350 and enjoy with your favorite chips. This dip is SO yummy!!!
I also have another book to recommend. It is called "Beneath a Southern Sky" by Deborah Raney. EXCELLENT book that I read today. I will just tell you a little about it. Basically a young woman and her husband are missionaries to a tribe in the jungle around Columbia, South America. Her husband is a medical doctor and is summoned to go to another village a couple of days away in a boat ride to help the people that are dying of an unknown illness. Well, days and weeks go by and no word from her husband. Finally word comes from the guides that her husband has been killed in a fire. Devastated she comes back the USA to live and discovers that she is pregnant with her dead husband's baby. She gives birth and meets a man at her workplace. Eventually they get married and have a baby. During her pregnancy, she receives a telegram that said that her husband Nathan had been found alive and would be returning to the states in a few days!!!!! Here she is thinking that her 1st husband is dead and she has remarried and is having another baby and her 1st daughter calls her 2nd husband daddy because he is the only one she has ever known. She has to make a decision of which man to stay married to!
I cannot imagine being in that situation!!! Gosh to have to choose between your 1st and 2nd husbands, loving both of them equally?!!! I think I would just, well I don't know what I would do! I highly recommend the book and I didn't give away a lot of details...basically just said what was on the back cover.
I am at the hospital still at the clock says 0326. I am listening to the ever constant beeping of the heart monitors. This is the ONLY hospital I have ever been in that turns the monitors on to wear each beat of the heart is turned in to an annoying beep on the monitor and there is a different noise for the oxygen saturation pulse! It sounds like someone is running a barcode over the scanner at walmart about 160 times a minute. Multiply that times 4 babies with each baby having 2 different beeps. I am going to hear these beeps for the rest of my life I think. I definately will NOT miss those annoying sounds
When my sister was in town, we went to Target and I finally found a Tinkerbell scrapbook that was big and a smaller one. I have been searching since before MJ was born for a TB one that was big and cute. I can't wait to get home and make a little extra money (extra money would be me actually going to work hehe) so that I can go to a scrapbook store and buy lots of cute scrapbooking stuff for little girls. Oh and develop the pictures that I have of MJ. I must have 1000 by now :) I STILL haven't received our professional pictures that we had done at the end of August. Hopefully something hasn't happened to them. As soon as MJ is all better, I will be taking her to a place in the mall called Lasting Impressions to have some REALLY good pics made. My friend Micah took her 2 year old there and got some really good pics for a pretty decent price.
Can you believe that no place around here has free wi-fi that is actually any good? So therefore I am not able to post pictures. I may email them to my sister and ask her to put them on my page and then I will rearrange them like I want. That's a good idea that I just had :) Hopefully she will be able to do it.
Well, that is all for now. I wanted to blog about something other than health information. Be sure to make that dip.....I promise it is very yummy!
Tuesday, October 02, 2007
I hate Mondays Current mood: crushed
Like I have said before, WHEN IS THE DEVIL GOING TO REALIZE THAT NO MATTER HOW MUCH HE TRIES, IT IS NOT GOING TO WORK??
I wish with all of the heart that I was able to say that everything was great here in California, but alas, I cannot. I stayed with Macy Jane until about 4 this morning and left to get some rest. When I left, she was perfectly content, sleeping and sucking on her pacifier. Well, Steve was frantically trying to call me this morning to tell me to get to the hospital ASAP, but I was in a deep sleep. He was able to contact my mom, who came in the room waking me up telling me that MJ was not doing well and I needed to get to the hospital. Needless to say, my heart was in my throat. I looked in the mirror and saw that my hair was standing up on my head all over and I must have a quick shower. I went to the hospital and all hell had broken loose.
Steve got there around 0730 and MJ was looking around and doing GREAT. She was not on ANY oxygen and her blood gases looked great. She was doing so well that she might have gone upstairs in a few days, if not tomorrow. Well, around 10am, MJ started gettig fussy. Steve changed her diaper, they checked her stomach for gas, but she was still not acting right. She almost immediately started breathing very hard, was becoming mottled looking and dropping her sats to the high 70s (she had been in the high 80s to 90s). They decided to do a breathing treatment, which did not help. The doctors came over and decided that she needed some bicarb because from her ABG she was acidotic. However, MJ DID NOT HAVE IV ACCESS. Remember a few days ago that the doctors said she would be okay without an iv? Yeah, now an emergency situation arose and they had no freaking way to give her the meds she needed. Finally, after 20 minutes, they were able to get an iv in her neck. Needless to say her condition deteriorated during this time because she did not get the meds that she needed at the time she needed. Finally after the IV, they had to reintubate her and try to get another arterial line on her because hers was not working since before all of this happened. Steve was PISSED. He asked for the charge nurse and told her that he wanted to see the medical director as soon as she could get in touch with him. She offered him coffee and tried to talk him down and out of it. Instead of doing what Steve asked, she got the cardiac doctor that is on this week. Steve said ya know treatment was delayed because she did not have an IV and we have been trying since Saturday to get you guys to put in a more permanent IV. The doctor said well she had a peripheral iv saturday night and Steve said RIGHT. And that IV stopped working YESTERDAY. She went 24 hours without an IV because ya'll didn't forsee anything happening to her where she would need it. Well, the unforseen happened and I want to talk to the medical director. Someone interupted them and the doctor had to leave. Needless to say, he still hasn't seen or heard from the Medical Director. I don't know if Steve will let it die down or not. That's up to him, but someone in charge here will get a letter once we leave to let them know how displeased we are with her care. Not all aspects of it are bad, but there are some key issues that are life threatening that need to be addressed.
Needless to say, MJ stumped the doctors. They had absolutely NO idea what was going on and what caused the problems. She had metabolic acidosis, which was confusing them because it showed that she did not have a problem with her lungs. She was breathing fine, fast--but ok. So, they decided that first and foremost she would be going to the cath lab to have a more permanent IV placed under general anesthesia and if the doctor had time, he would do a heart cath to see if that was the problem.
Well, we are feared the worst that her heart was failing or her pressures in the heart were too high, or worse that her new pulmonary arteries were closing off. Finally at 6:45pm, Dr. Perry came and told us the news. A normal person like you or I normally has a 1:1 ratio of blood flow in our bodies. Half the to the body, and half to the lungs. In MJs case, she had a ratio of 4:1. 4 times the amount of blood going to her lungs than her body. This turns out to be a good thing in the long run, but a bad thing at this very moment because it causes things like this to occur. Most babies that have had MJs surgery do not have adequate blood flow or limited blood flow to the lungs, but she has too much!!!!!! 4 times too much.
So where do we go from here? MJ is now the proud owner of a new Broviac Central Line with ports :) On Wednesday morning, they will have a cath conference with Dr. Hanley and update him on what is going on. He has 3 options. The first is to try to manage the blood flow with medications, which is hard to do and not usually his choice. 2nd: do surgery again and make the size of her shunt smaller so that less blood flow is going to the lungs or 3rd: go ahead and do the complete repair of MJs heart. Noone knows what he will decide to do. Naturally, we would all like for him to be able to go ahead and do the complete repair while we are out here, but we also want him to do what he feels is the best thing.
They hope to have her off of the ventilator tomorrow sometime, since her lungs really aren't the issue. We shall see. I totally do not expect this at all. Today I was upset and crying to God why was all of this happening? She was doing so well and then BAM! After the cath, I realized that maybe God was allowing this to happen so that we could go ahead and have the complete repair done while we were out here. Now, I do not know what will happen but I do know that the Lord's hand is in it, eventhough it is way hard to realize that at times.
Please continue to keep us in your prayers. It is getting harder and harder to face each new day and the challenges that it brings. It would be alittle easier I think if the people out here were not so rude and inconsiderate. I swear I just can't believe the way that people behave. Today, we were sitting by MJs bed waiting for her to get out from heart cath. Her nurses told us we could stay back there beacuse the doctor would come here to talk to us. Well, they transferred a kid to the room MJ is in and after the kid had been there 15 minute, the charge nurse came over with her mouth full of food and told me and my mom that we needed to leave so that they could admit the kid. I was SOO beyond pissed off. The kid was already admitted and settled in and NEVER once have they kicked us out when they bring a new baby to the room. They only ask people to leave during a crisis. Did they ask the 3 sets of parents to leave this morning when MJ was crashing and they were doing sterile procedures? HECK NO. They all sat in their chairs by their kids beds and watched the whole entire proceedings of what was going on with our child. And then they ask us to leave when they bring in a stable and screaming baby? I don't think so. We went to the area where steve was sitting and 2 girls were sitting there probably 10 and 16 years old. One girl was blowing bubbles really loudly every 15 seconds to where it sounded like a balloon popping. the other one was smaking her gum I swear about 200 times a minute. Steve thought at first that she was mentally retarded the way she was acting, but she wasn't---she was just being RUDE. The little girl kept slapping the couch and smacking the pages of her books. If she didn't leave or stop soon, I was about to politely turn to them and ask them to please stop smacking their gum and being so loud! I am to the point now where I am so tired of people being rude that I am about to point out their rudeness to them. I feel like I did my freshman year in college when I had the roomate from hell named Esther. We always argued and I was always on the defensive just waiting for her to lash in to me again so I could tell her off. I hate being like that and know that it is because my nerves are shot. I am trying to be nice, but I would appreciate some in return dang it! :o(
Well, I am going to walk around. It is really HOT in here and they are busy with MJ. Thanks for the prayers, maybe I will have better news tomorrow. I mean yes it was bad news that she was on the vent again and had to go to the cath lab, but in a way it is good because we now know that she has not only adequate blood flow to her lungs, but too much
Much Love
Bethany
I hate Mondays Current mood: crushed
Like I have said before, WHEN IS THE DEVIL GOING TO REALIZE THAT NO MATTER HOW MUCH HE TRIES, IT IS NOT GOING TO WORK??
I wish with all of the heart that I was able to say that everything was great here in California, but alas, I cannot. I stayed with Macy Jane until about 4 this morning and left to get some rest. When I left, she was perfectly content, sleeping and sucking on her pacifier. Well, Steve was frantically trying to call me this morning to tell me to get to the hospital ASAP, but I was in a deep sleep. He was able to contact my mom, who came in the room waking me up telling me that MJ was not doing well and I needed to get to the hospital. Needless to say, my heart was in my throat. I looked in the mirror and saw that my hair was standing up on my head all over and I must have a quick shower. I went to the hospital and all hell had broken loose.
Steve got there around 0730 and MJ was looking around and doing GREAT. She was not on ANY oxygen and her blood gases looked great. She was doing so well that she might have gone upstairs in a few days, if not tomorrow. Well, around 10am, MJ started gettig fussy. Steve changed her diaper, they checked her stomach for gas, but she was still not acting right. She almost immediately started breathing very hard, was becoming mottled looking and dropping her sats to the high 70s (she had been in the high 80s to 90s). They decided to do a breathing treatment, which did not help. The doctors came over and decided that she needed some bicarb because from her ABG she was acidotic. However, MJ DID NOT HAVE IV ACCESS. Remember a few days ago that the doctors said she would be okay without an iv? Yeah, now an emergency situation arose and they had no freaking way to give her the meds she needed. Finally, after 20 minutes, they were able to get an iv in her neck. Needless to say her condition deteriorated during this time because she did not get the meds that she needed at the time she needed. Finally after the IV, they had to reintubate her and try to get another arterial line on her because hers was not working since before all of this happened. Steve was PISSED. He asked for the charge nurse and told her that he wanted to see the medical director as soon as she could get in touch with him. She offered him coffee and tried to talk him down and out of it. Instead of doing what Steve asked, she got the cardiac doctor that is on this week. Steve said ya know treatment was delayed because she did not have an IV and we have been trying since Saturday to get you guys to put in a more permanent IV. The doctor said well she had a peripheral iv saturday night and Steve said RIGHT. And that IV stopped working YESTERDAY. She went 24 hours without an IV because ya'll didn't forsee anything happening to her where she would need it. Well, the unforseen happened and I want to talk to the medical director. Someone interupted them and the doctor had to leave. Needless to say, he still hasn't seen or heard from the Medical Director. I don't know if Steve will let it die down or not. That's up to him, but someone in charge here will get a letter once we leave to let them know how displeased we are with her care. Not all aspects of it are bad, but there are some key issues that are life threatening that need to be addressed.
Needless to say, MJ stumped the doctors. They had absolutely NO idea what was going on and what caused the problems. She had metabolic acidosis, which was confusing them because it showed that she did not have a problem with her lungs. She was breathing fine, fast--but ok. So, they decided that first and foremost she would be going to the cath lab to have a more permanent IV placed under general anesthesia and if the doctor had time, he would do a heart cath to see if that was the problem.
Well, we are feared the worst that her heart was failing or her pressures in the heart were too high, or worse that her new pulmonary arteries were closing off. Finally at 6:45pm, Dr. Perry came and told us the news. A normal person like you or I normally has a 1:1 ratio of blood flow in our bodies. Half the to the body, and half to the lungs. In MJs case, she had a ratio of 4:1. 4 times the amount of blood going to her lungs than her body. This turns out to be a good thing in the long run, but a bad thing at this very moment because it causes things like this to occur. Most babies that have had MJs surgery do not have adequate blood flow or limited blood flow to the lungs, but she has too much!!!!!! 4 times too much.
So where do we go from here? MJ is now the proud owner of a new Broviac Central Line with ports :) On Wednesday morning, they will have a cath conference with Dr. Hanley and update him on what is going on. He has 3 options. The first is to try to manage the blood flow with medications, which is hard to do and not usually his choice. 2nd: do surgery again and make the size of her shunt smaller so that less blood flow is going to the lungs or 3rd: go ahead and do the complete repair of MJs heart. Noone knows what he will decide to do. Naturally, we would all like for him to be able to go ahead and do the complete repair while we are out here, but we also want him to do what he feels is the best thing.
They hope to have her off of the ventilator tomorrow sometime, since her lungs really aren't the issue. We shall see. I totally do not expect this at all. Today I was upset and crying to God why was all of this happening? She was doing so well and then BAM! After the cath, I realized that maybe God was allowing this to happen so that we could go ahead and have the complete repair done while we were out here. Now, I do not know what will happen but I do know that the Lord's hand is in it, eventhough it is way hard to realize that at times.
Please continue to keep us in your prayers. It is getting harder and harder to face each new day and the challenges that it brings. It would be alittle easier I think if the people out here were not so rude and inconsiderate. I swear I just can't believe the way that people behave. Today, we were sitting by MJs bed waiting for her to get out from heart cath. Her nurses told us we could stay back there beacuse the doctor would come here to talk to us. Well, they transferred a kid to the room MJ is in and after the kid had been there 15 minute, the charge nurse came over with her mouth full of food and told me and my mom that we needed to leave so that they could admit the kid. I was SOO beyond pissed off. The kid was already admitted and settled in and NEVER once have they kicked us out when they bring a new baby to the room. They only ask people to leave during a crisis. Did they ask the 3 sets of parents to leave this morning when MJ was crashing and they were doing sterile procedures? HECK NO. They all sat in their chairs by their kids beds and watched the whole entire proceedings of what was going on with our child. And then they ask us to leave when they bring in a stable and screaming baby? I don't think so. We went to the area where steve was sitting and 2 girls were sitting there probably 10 and 16 years old. One girl was blowing bubbles really loudly every 15 seconds to where it sounded like a balloon popping. the other one was smaking her gum I swear about 200 times a minute. Steve thought at first that she was mentally retarded the way she was acting, but she wasn't---she was just being RUDE. The little girl kept slapping the couch and smacking the pages of her books. If she didn't leave or stop soon, I was about to politely turn to them and ask them to please stop smacking their gum and being so loud! I am to the point now where I am so tired of people being rude that I am about to point out their rudeness to them. I feel like I did my freshman year in college when I had the roomate from hell named Esther. We always argued and I was always on the defensive just waiting for her to lash in to me again so I could tell her off. I hate being like that and know that it is because my nerves are shot. I am trying to be nice, but I would appreciate some in return dang it! :o(
Well, I am going to walk around. It is really HOT in here and they are busy with MJ. Thanks for the prayers, maybe I will have better news tomorrow. I mean yes it was bad news that she was on the vent again and had to go to the cath lab, but in a way it is good because we now know that she has not only adequate blood flow to her lungs, but too much
Much Love
Bethany
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