Tuesday, July 31, 2007
I don't just believe that Prayer helps. I know it does. I know that our Heavenly Father wants to bless us but there are times when we have to ask for those blessings or have someone ask for us. He is waiting, wanting to give us these blessings and all we need to do it ask and then we receive.
One Friday night, a couple in my ward decided to go out on a date. As they left their neighborhood and were driving to dinner, they got stuck in traffic. As they inched their way forward, they realized there was a car accident that was causing the back up. As they passed the accident, they were both impressed upon by the Spirit that the people involved needed someone to pray for them. So they turned their car around and went back home. They gathered their family together and knelt down and offered a prayer for those involved even though they had no idea who it was.
I was the person in that car accident. I was the one who was dying. But Heavenly Father knew I needed blessing, so he inspired someone he knew was listening to pray for me. And because they did, He was able to give me the blessings I so desperately needed. I nearly died that night but I made a full recovery. I know without a shadow of a doubt it was because of the many prayers and priesthood blessings I received that I am still here today.
I also know that Noah has made it this far because of all the prayers that have been offered on his behalf. Because I have such a testimony of prayer, I can't even begin to express my gratitude for every single prayer YOU have offered in his name. It is because of you and a Heavenly Father who listens that my baby is still here, fighting his fight. So Thank you! From the bottom of my heart. And please don't stop. He still needs us to storm Heaven for him so he can get better.
With Much Love, Crystal at 9:36 PM
I had an interesting thought this evening but to understand where it came from I need to give you a little back ground.
When I was 17, I was in a bad car accident (a Jeep rollover). I was in the back seat and as we skidded upside down, my foot got stuck under the roll bar and road rashed the top of my foot off. The injury was so bad, the EMTs that responded to my accident decided to life flight me to the hospital. Once I got to there, they realized I had a brain injury. A blood clot was forming and growing bigger by the moment. I was rushed into surgery to remove it. The Dr's said that I would have been dead within 10 minutes if they hadn't gotten it out when they did.
If it wasn't for my foot being damaged I would have died because my brain injury wouldn't have been caught in time. So while it was a very terrible thing, it turned out to be a huge blessing. (Which I think about every time I look at my scarred foot.)
Now for my thought:
I have thought that Noah was having some rejection for about a week now. The Dr's weren't quite ready for that conclusion and hadn't decided to treat yet. But something just told me that rejection was part of what was going on.
Then this bad allergic reaction to the transfusion happened and he got VERY sick. Much sicker than he had been. The treatment for it? Steroids. The same treatment they use for Rejection.
So while this reaction was terrible and made him really sick, maybe it was a blessing in disguise because it forced them to treat the Rejection they couldn't confirm was there.
*******************I know my Heavenly Father is very mindful of us. I learned first hand of His love for his children after my car accident. And I am learning it all over again watching Noah. I know He hears our prayers and that they make all the difference in the world. While watching my son suffer is the most unbearable burden I have ever been called to bear I do find comfort in knowing Heavenly Father is blessing Noah and supporting us as we walk this road with him. I know I don't have the strength to do this on my own. But He has given me the strength I need. And for that I will be eternally grateful.
This has always been my favorite "Mormonad" (Inspirational posters created by the LDS Church). It was on my bedroom wall for years and my Mom brought it to the hospital and hung it in my room after my car accident. I think about it often as I lay in bed here in Denver. And even though I only see it when I close my eyes, it still brings me comfort.
With Much Love, Crystal at 9:02 PM
Sunday, July 29, 2007
Noah is back in the ICU on a ventilator. They are keeping him very sedated at the moment as they are trying to get an art line then tomorrow they will do another PICC (on top of the 2 IVs he currently has).
They believe the blood transfusion he received caused him to develope TRALI : Transfusion Related Acute Lung Injury. I'm typing this on my phone so I can't link to any information on it but if you Google ''TRALI'' it brings up lots of info on it.
Right now he' covered in hives on the inside and the outside. Benedryl doesn't help and they started Steriod treatment which will also treat the rejection they now believe he's been having (sometimes a mom just knows). The steriods are also causing high blood sugar so they have to give him insulin on top of all the other drugs.
He's in criticle condition and is super super sick. Infection, Rejection, Fluid imbalance, and now TRALI.
This feels like it did the day before he got his heart. When he was really sick and we didn't know when he would get a heart and if it would be in time... Feels more like a sick road instead of a recovery road. But Noah is strong. He's proven time after time that he can beat the odds and pull through. He's my hero. And if he can be strong, then so can I.
With Much Love, Crystal at 4:08 PM
Saturday, July 28, 2007
Little Noah's blood transfusion did not go so well.
He had some sort of reaction to the blood and it caused him to swell like a balloon and turn as red as a tomato. The Benedryl they gave him isn't working as well as I would hope either. My poor little man. He is so uncomfortable and grouchy. I'm here at the hospital right now holding him and he's doing ok for the moment but I have to leave to put Lilly to bed and I just know he's going to have a hard time tonight.
To make it even harder to leave, tonight his nurse is Ben. Last time he had Ben, I was told: 'I have other sick patients so I will try to check on him as much as I can but to be honest it won't be much.' So I'm sure you can imagine how well that sat with me. At least that was when Shane was here and he spent most of the night with him.
I sure hope this doesn't prevent them from making a good decision on treating the possible rejection. I just feel so bad for Noah. Almost 2 months old and he's never been healthy. If he could even feel good for one day!! Poor little thing... I just love him to pieces.
With Much Love, Crystal at 7:46 PM
I got a call this morning from the on-call transplant coordinator. It seems Noah is still really sick and when they checked his red blood cell count today it was extremely low. They needed to give him a transfusion and needed my authorization.
The situation is very confusing. All of his symptoms could be two things: Infection or Rejection, Messed up fluid levels and Electrolytes or Rejection. So if the changes they make today (transfusion, another diuretic and some Magnesium) don't make a big enough different by tomorrow, they are going to start treatment for Rejection.
He keeps having PVCs (premature ventricle compressions) also known as an early heart beat but his echo's still look good. But like I mentioned earlier, something still doesn't feel right. I don't want him to have Rejection, but I won't be surprised if the infection has caused some. BUT, even if he is rejecting a bit, at least we will be able to treat it before his heart function has suffered.
It's sad though, he still looks so sick. I went in to see him again this afternoon and he was wide awake just looking at the blood transfusion tube. For some reason, he was really interested by it. AND he smiled at me.... I remember when Lilly was born and she had such TERRIBLE reflux. I had been up all night (for WEEKS) and I was so tired. Shane had just left for work and then Lilly threw up all over me. I was so exhausted, I just started to cry. Then I looked at her and she looked at me and smiled. And suddenly, I wasn't so tired anymore and everything was better. It's funny how that works, isn't is?
But.. the good news? Even if Noah has to be treated for Rejection and all goes well, he won't have to stay in the hospital any longer than he was going to have to for the antibiotic. So, there is a chance he will be released next Thursday. Just in time for Shane's visit.
With Much Love, Crystal at 4:52 PM
Friday, July 27, 2007
This is Lilly at the Denver Zoo. It was hot and muggy but she had fun.
With Much Love, Crystal at 8:54 PM
Noah is still pretty sick. He had an x-Ray that showed fluid on his lungs and his eyes are very swollen. He's also still having a very hard time breathing. So they decided to start him back on the diuretic again. I know he's not feeling well because he puked all over and kept dry heaving even after his tummy was empty. Its so sad to see him look sick.
But they still haven't decided if he's only fighting an infection or if he is rejecting also. It's such a fine line to not treat too soon or wait too long but everything is just very confusing right now. If they treat rejection too soon that could "tip over the apply cart" (as I was told today) and cause him to continue to have rejection episodes. So they want to make sure it's really rejection before they treat it. There are two main ways to diagnose rejection. One is an Echo (an ultrasound of his heart). So far those have looked good. His heart function is still good. If that begins to show even the slightest sign of decline, in addition to all the other symptoms he is having, they would treat immediately. The other way is to do a Heart Cath. But this soon after transplant and being that Noah is an infant and has years and years of caths a head of him, they really don't want to do that. The more cath's he has the more likely his veins are to shut down and they won't be able to use them anymore.
Right now, things are just up in the air. I know he's not getting better as of now. The first day back in the hospital he looked much better after the antibiotic started but then each day after that he's begun looking sicker and sicker. So Allison and I are still both worried and concerned that something is up. She told me that she called Dr. Pietra (the head transplant cardiologist) in the middle of the night to discuss her concerns about Noah. I really appreciated that. I'm glad she doesn't just dismiss my worries. Anyways, he said he's keeping a very close eye on him and will make sure nothing goes un-noticed. The other transplant coordinator who was in-patient today said she thinks it's just the infection and trying to balance his fluids. So I guess we'll see. I sure hope that's all it is. The thought of rejection scares me. But so does the idea of him having it and not getting treated in time. I guess I just need to have faith in the Transplant Team. They have helped him so much already and I do feel confident that they are the best and that he's in good hands. I did express to them though, that while I want him to be released, I want to make sure it isn't until it can be permanently and not prematurely. I still feel horrible that he got so sick while in my care. I understand that it wasn't my fault, but as a mother, that knowledge doesn't always help.
With Much Love, Crystal at 8:39 PM
Thursday, July 26, 2007
Right now I am sitting in Noah's hospital room rocking him while he sleeps. As I sit here and think about the last 6 weeks I am over come with gratitude. We have been given so much. From prayers and support, to a place to sleep while we are way from home, to a new heart for my son.
I decided to look up the Ronald McDonald House charities on my phone as I sit here. Looking at their website (and staying there for the past month) I am humbled by their service. And what a wonderful service it is. To provide a home away from home for families with sick children. If I hadn't found myself in this situation and with this need I don't know if I would have realized there were people out there needing this. But now that I have, I can not wait to repay them for their service. When I am finally able to come home I plan on bring meals and other items of need to my local RMH. And if anyone reading this is looking for a service project, I urge you to do the same.
At the RMH here in Denver, they have volunteers come in and give massages every week. I thanked the man who came in last week and he told me that he was repaying hsi debt since 20 years earlier he had benefitted from the RMH charities. I myself, can not wait to do the same.
With Much Love, Crystal at 2:15 PM
Tuesday, July 24, 2007
Noah seems to be doing better now that he is on the antibiotic. His color looks better and he doesn't look so sweaty. He's also breathing better. He is still have vtac and weird heart rhythms but they are getting better. So, the current thought, is he's not rejecting. He probably just had the rhythm because of the infection. His echo looked better today, and he looked better, and his labs were better and all they have done is treat infection. If it was rejection, he should be getting sicker because they haven't treated that yet. It's still too soon to know for sure. It could all change tomorrow but for now, we are hopeful.
He also didn't get the PICC today. Since he was is such a hard stick they were going to have a NICU Dr come and put it in by cutting his arm to prick the vein directly instead of going through the skin (I didn't know this until today and was completely against that idea!). But since he is doing better, and they IV in his head is working for now, they decided not to do it until they had to just in case he doesn't need it. They original worry was that he was septic. All his symptoms said sepsis but yet he didn't have the high fever you would expect with that. But, if he doesn't have it, then he won't need to take the Antibiotics for longer than 10 days. And if there is a chance his current IV will last that long, then lets give it a try.
Basically, the current situation is, we don't think he's rejecting. He probably just has an infection that the last round of antibiotics didn't clear up completely. BUT... it's still too soon to know for sure. We have to wait and see how he continues to respond and see what happens. This is good news though. My current wish was that I could have spent more time there today. Lilly was NOT having it. Every time we went she started throwing a fit and kept upsetting Noah and making it impossible for me to talk to the Nurses. I never even got to hold him. I feel so bad when I call to check on him and they have a volunteer holding him. It breaks my heart that I'm not there holding him and someone else has to. I'll be very relieved when Jen comes back and can help me with Lilly so I can give Noah the attention he needs right now.
With Much Love, Crystal at 9:21 PM
Monday, July 23, 2007
Noah has been re-admitted to the hospital.
I took him to clinic this morning since he has to go in every Monday and Thursday to have blood drawn, get an EKG and an Echo and be evaluated by the Transplant Coordinator. Over the weekend he seemed to be progressively getting sicker. He started breathing very heavy and got very cranky. When I told Allison (his TC), I could tell she wasn't happy. She didn't say much but sat there and held him. Then she said she was going to call the Dr because something just didn't seem right to her. When Dr. Pietra came in he squeezed Noah's incision and it oozed out puss (from a section that looked completely healthy). He immediately said to admit him and get him started on IV antibiotics right away since he thinks it's sepsis (when the infection has spread to his blood and begins infecting his whole body).
Then the real scary part... Shortly after he was admitted, I was holding him waiting for the Nurses to come put in another PICC Line. He started grimacing and an alarm started to sound. This wasn't the normal "hey something is up" alarm. This was different. I looked at the monitor and his EKG was freaking out and his heart rate was 205! A nurse came rushing in but just then his rate returned to normal and everything seemed ok. He still had the unsettling down beat and it was a little more common then you would like to see but at least his heart rate was back to normal. Well... that didn't last long. A few minutes later the rhythm came back and this time he didn't snap out of it. His heart was racing! At one point it was reading 356 beats per minute. Suddenly the room was full of people rushing here and there. Allison came in and I could tell she was worried. They couldn't get him to snap out of it so they had to use a medicine to stop his heart. Then it restarts on its own and causes it to break the bad rhythm it was in. All of this was VERY scary. I just stood against the wall and watched and tried to hold it together. If I don't stay strong I might crack.
After this they ran some labs and with all of that info (decreased kidney function, slightly elevated white cell count, etc) they believe he was having this rhythm over the weekend and might be rejecting. So he probably has an infection and he's rejecting his new heart on top of that. This is scary because they can't treat the rejection if he has an infection. The last thing you want to do is kill off his immune system even more when he's fighting an infection. So, we should have a better plan of attack tomorrow after he has been on the antibiotic a day. But hopefully it works because if the infection doesn't start to clear up fast they may have to cut open his incision again to clean it out. And we can't treat the rejection until the infection is better. *sigh*
They also had a very hard time getting an IV or PICC line. They eventually had to stop trying and will try again tomorrow. So right now he has an IV in his hand and his head. We'll have a NICU Dr come down tomorrow and try for the PICC. They tried so hard that he screamed and screamed. I thought my poor little boy was going to choke.
Please keep Noah in your prayers. He's having a very hard time and had such a rough day. He's so strong and such a fighter but he's really having to go through a lot. We were so happy to have him home and then to have such a set back is devastating. On top of all this, Shane went back to Salt Lake today. He has to keep working to pay our bills and keep our insurance. It's SO incredibly hard to be here without him. When he's here everything seems different and more bearable. Without him I feel like I'm running on empty and hanging by a thread. But we are so happy he was here when Noah was out of the hospital and that he got to celebrate Lilly's 2 yr birthday with us. She was SO excited her Daddy was here. He is such a wonderful Dad. Lilly, Noah and I love him so much. We can't wait to see him again.
With Much Love, Crystal at 7:39 PM
Saturday, July 21, 2007
In this case, home is the Ronald McDonald House but we aren't complaining. One day short of 2 weeks post transplant and the Dr's said he was ready to be released. Six weeks after he was born.
We went to the hospital Friday morning not expecting to discuss discharge until Monday but Dr. Campbell (One of the best Pediatric Heart Transplant Surgeons in the Nation and the one who did Noah's transplant) had been by that morning and said all he had was a superficial infection of a stitch in his incision (not a blood infection) which meant he could be taken off the IV antibiotics and switch to Oral which all translates to him being ready to go home.
After getting all the supplies organized and getting oxygen tanks and making 3 visits to the pharmacy to get all his meds, we finally left about 7pm. Just in time for us to get back to our room and start his 8 pm medication (which took me 1/2 hr to measure up and double check). He was sent home on the following meds:
Neoral twice a day. He will be on this the rest of his life. (to suppress his immune system)
Cellcept twice a day. This is for 6 months and then we switch to Immuran. He will only stay on this long term if he has rejection. (to suppress his immune system)
Captopril 3x a day until we can ween. (to help with blood pressure and heart function)
Lasix twice a day until we can ween. (Diuretic to help reduce fluid retention)
Methadone twice a day. We begin weening on Sunday but should continue for at least 2 more weeks. (because he was on a morphine drip for so long)
Nystatin three x a day for a month. (to prevent thrush in transplant patients)
Prilosec once a day until he stops throwing up. (because his meds make him puke alot)
Keflex four x a day until next Tuesday. (to treat his infection)
Bactrim twice a day on Fridays, Saturday, and Sunday for the next 4 weeks. (to prevent a type of pneumonia common in transplant patients)
Shane thinks its wrong to send a kid home from the hospital on so much medication and expect the parents to do all that without screwing it up. But we are so happy he is home, we'll give him anything we need to to keep him healthy.
So far we have been doing great. He is very content and only gets mad when you wipe his bum. He LOVES to be held and LOVES his head stroked more than anything. He sleeps all night so I have to give him 100% of his feeds through his feeding tube. He just wont wake up. But he has been doing a very poor job at eating during the day too so most of his feeds are through the tube for now anyways. I actually don't mind having the tube right now. It does make night time feedings MUCH easier and I love that I don't have to get him to swallow all these cruddy medicines. We do give the Neoral and Cellcept by mouth so he can get used to it since they are long term and the nystatin because it has to be all over in his mouth, but everything else goes in the tube without a fuss and then we just hope it doesn't come back up. The Cellcept makes him sick which is very common and usually goes away right about the time he gets to stop taking it. Go figure.
Here are a few pictures OUTSIDE of the hospital.
Alright, I guess you are going to have to wait for the pictures. I've tried to upload them over 10 times and I keep getting an error. My Internet connection is super slow tonight so I will try to post them again tomorrow. Sorry. But please check back because he is the cutest little thing, you just have to see the pictures.
The current plan is we go back to the hospital every Monday and Thursday for an Echo, EKG, blood tests, and a checkup for the next 3 months. If no rejection, then we get to go home the beginning of October. If he has rejection, our 3 months start over again. After we go home, he gets the same tests done once a week at Primary's for 6 weeks then every other week for 6 weeks then if everything is still good we go every 4 months... Transplant definitely doesn't mean everything is OK after that, but it's SO much better than what we started with.
One last thing... I had asked the social worker to inquire about the apartment that the Ronald McDonald House has in case we could move to that since I just couldn't figure out how it was going to work with Lilly and Noah all in one small room. She called but unfortunately the Apartment was in use already. But it just so happened that the biggest room in the house was becoming available that same day so we got to switch rooms. This room is SO much bigger. It has a wall separating the sections of the room so we have more privacy and less noise and it has 2 walk in closets. It's just MUCH better since we will be staying here for 3 months with an infant and a toddler. And this all happened the night before Noah was released. Heavenly Father definitely knew our need and provided a solution. This new room has been wonderful. Lilly has a place to sleep all her own, so I can move around without being absolutely silent to deal with Noah and she doesn't wake up. I can even have a light on now so I can see what I'm doing. This helps out SO much and relieves a ton of stress I was having. So I am SUPER grateful.
Stay tuned for the pictures....
With Much Love, Crystal at 9:28 PM
Wednesday, July 18, 2007
Before Noah was even born I was looking forward to bringing him home. I imagined going into his room to change his diaper and sitting in the rocking chair to feed him. I even imagined watching him in the swing as I sat at my computer and worked. I had all these ideas on how life would be different once he was here.
Life is definitely different. Just not how I imagined it.
Noah's nurse (the Transplant Coordinator) figured he would be able to be released on Friday. But since he now has a blood infection, the Surgeon says he needs to be on 10 days of an IV antibiotic which started Saturday. So chances are he won't be released till Monday or Tuesday. But, he will reassess on Friday and see if he can switch to an Oral antibiotic or just keep the IV and come back to the hospital once a day to get his flush.
I just can't believe the day is near that I will be able to walk out the hospital doors with my baby in my arms. It has been such a long 5 1/2 weeks, yet he didn't even have to wait very long for his new heart and his recovery since has been so fast. I am so thankful that Heavenly Father quickened the time. I can't imagine how hard it would be if we were still waiting.
One item of interest: I had to put Noah's feeding tube (NG Tube) in today. This is the tube that goes in his nose, down his throat, and into his belly. I then had to learn how to check placement. I was really nervous because I didn't want to mess it up and cause him pain but all went well. Hopefully he won't need it long. He is eating fine, he just gets too tired to finish. So until he gets his strength up and can eat more, we will put his "leftovers" through the tube.
Tomorrow I go and pick up the 9 or so Rx's from the pharmacy and meet with the Nurse to learn the correct dosages and schedules. He has to get his Neoral at 8 am and 8 pm every day for the rest of his life. And it has to be at 8. I can't forget and give it to him 20 minutes later.... Guess I need to get a watch with an alarm on it. The Neoral is the medicine that suppresses his immune system. He is on another suppressant too for the next 6 weeks or so but then that is cut. So lots of meds right now, but there should only be the one forever. (Tammy, I will post which meds they are once I get the "list" tomorrow.)
Once our 3 months are up and we get to come home, we have the choice to either switch his primary care to Primary Childrens and begin following their program, or stay with Denver and come back for all the major tests and any possible rejection but have Primary's facilitate Denver's program for us. We are going to stick with Denver's program because they use lower levels of suppressants and have less of a risk for Kidney Transplant (the drugs he will be on can cause Kidney damage and many heart transplant patients end up needing new kidneys). They also don't use Steroids as long term treatment. He would only need those to treat a rejection episode. So I feel really good about their program and the results they have had. Only downside, is we will need to make a yearly trip to Denver for his Caths. But hey... Denver does have one of the best water parks in the nation.
With Much Love, Crystal at 9:44 PM
Tuesday, July 17, 2007
I just found out that Noah has a fever. They think he has some sort of infection. Either in his PIC Line or his incision. So they are going to do some test and figure out which it is and start an antibiotic. They are also going to take out his PIC line (a really long IV that goes up his arm and empties near his heart) and his feeding tube. if he continues to eat well he won't need the feeding tube. If he doesn't, they are going to teach me how to put it in and check placement.... I just hope the fever goes away.
With Much Love, Crystal at 9:19 AM
The day Noah was born he was in the ICU. First, he was in the NICU at Primary Childrens Hospital. Then, after being life flighted to Denver, he's been in the CICU (Cardiac ICU) at The Children's Hospital. Well, no more. Yesterday He was transfered OUT of the ICU to a regular in-patient room (he gets his own since he's a transplant patient). Its always been hard to know that my baby was the sickest one on the floor but now he's not. He's doing so well that the Transplant Coordinator thinks he'll be released by Friday. He's off the CPAP and the only meds left are the ones he'll come home on. They removed the pacer wires and he's been eating from a bottle for 2 days. (Yes, I've gotten to feed him!!) This week I will have to learn all his medications and the exact times he has to take them. I'll learn what rejection looks like, though I hope I never see it. And I'll get to hold and feed him everyday. I'm just so happy he's doing so well. Its hard to believe he can be so healthly with no immune system and a whole new heart beating in his chest. The Lords works mighty miracles!!
On a sad note, my kitty Ginger died Sunday. Our neighbor found her in our garage. I felt so silly being so sad about a cat when my son is doing so well, but I guess everything has its place and its ok to grieve for something that I love.
And for those interested in Lilly, she is doing well. She's very happy her Daddy is here. She isn't sleeping very well but who can when we are all sharing a room? Her newest cuteness? She puts her hand up to her mouth and says 'All aboard!'. She also tells us to sleep 'pretend sleep' then she lays down and makes snoring noises. She is just the cutest thing ever. Her birthday is Sunday and she'll be 2 years old. I just can't believe how fast she has grown. She has brought me joy every day since she was born and she's going to be a wonderful big sister.
With Much Love, Crystal at 9:19 AM
Saturday, July 14, 2007
The Drs and Transplant Coordinators can't tell you anything about a Donor Family. To respect privacy, they won't even tell us where Noah's new heart came from. All I've been able to determine was that it was about 2.5 hrs away and since most of the donor hearts here in Denver end up coming from Texas, I'm guessing probably Dallas.
Anyways, even though we don't know who our Donor Family is, we are allowed to write them a letter that the hospital can pass on to them. I've been thinking about doing this. The problem is I have no idea what to say. How can I express how sorry I am for their loss and still say how thankful I am for their decision to donate? "I'm sorry for your loss BUT...." ??? I guess I'm just worried that the words I write won't adequately express my feelings. I don't want to cause them any more pain but I want them to know what they mean to me.
I'm sure after several revisions (and who knows how many prayers) I'll come up with something that feels right.
Noah is still doing really well. He is staying stable on the CPAP and they were able to take out his groin IV line. If he continues to do well by Monday I'm hoping they will switch him to a regular nose cannula and then I can start holding him every day... And now that the vent tube is out I get to hear his little voice. It's so weak and horse but it's so cute. Who would have ever guessed I would be SO happy to hear my baby's sweet cries.
With Much Love, Crystal at 9:03 PM
Friday, July 13, 2007
That's right... Noah was taken off the ventilator today!
With Much Love, Crystal at 5:58 PM
I received a call today informing me of an anonymous gift that was given to Shane and I that brought me to tears. To respect privacy, I won't say what the gift is but it is amazing.
THANK YOU SO VERY MUCH!! I don't even know what to say. I am stunned and amazed that someone would do such a wonderful thing. I can't even begin to tell you how much this means to us. I wish I could thank you in person but since I couldn't get anyone to even give me a hint of who you are, I hope you read this and know how thankful we truly are.
With Much Love, Crystal at 5:35 PM
Thursday, July 12, 2007
Noah is still doing well. His belly is getting bigger, which really has me worried but the Drs don't seem too concerned. They think it's just gas, fluid retention, and maybe some constipation. They took him off the Morphine drip to help stimulate his gut and also started his feeds again yesterday. I really hope the swelling goes down.
Other than that he is good. The Transplant Dr says she sees no reason why he wouldn't be able to be taken off the ventilator within the next 2 days or so. I'm not getting my hopes up too much since I know it will take some time. He's been on the vent his whole life. He can take it slow if he needs to. All that matters is that we are headed in the right direction. And before we know it, I'll be sleep deprived due to late night feedings and I'll be the happiest mother in the world!!
P.S. Lilly and I are SO VERY excited! Shane is coming tomorrow and gets to stay for 10 whole days! We sure miss him.
With Much Love, Crystal at 1:16 PM
Wednesday, July 11, 2007
Thursday July 5th, Noah went to the cath lab to have a stent put into his atrial septum (the hole in between the left and right side of the heart). His heart was so swollen from the increased pressure, the Drs were hoping to relieve some of the pressure and help it shrink down (I saw the x-ray, his left side was SO big it touched the far side of his ribs completely collapsing his lung). As I sat in the Surgery waiting area, I felt so lonely. I saw all these other families waiting for updates on their loved ones. They had each other to talk to and help distract them. I don't think I have ever felt so lonely in my entire life. Then I had a thought. Shane wasn't scheduled to come out for another week because he couldn't take time off work. But it just so happened he had Saturday off anyways. I decided he needed to come out this weekend, regardless if the ticket was more money since it was short notice. He needed to be here. I called him and convinced him to come. I used the hospitals computer and bought him a ticket.
Noah's surgery took over 7 hours and when they were done, Noah was very sick. Over the next night, his stomach began swelling. By the next morning, the Drs were concerned that his bowls would rupture. He needed a heart so badly. The procedure had just taken so much out of him. It was suppose to help make him last longer in case a donor wasn't available for a while but it made him much sicker. I left the hospital scared but with renewed strength knowing I would see Shane in a few hours and that would help me be strong.
I went back to our room at the Ronald McDonald house to get dinner. My phone rang at 5:18 pm. It was the hospital. When I answered it, it was Allison the Transplant Coordinator. When she told me that, the thought came to me... "Do you have any idea what you do to me when you call???" She sounded very reserved and almost preoccupied. Then she said the last thing I expected to hear. "We may have a potential Donor for Noah." I was so shocked I think I actually asked her if she was serious. She told me it takes a while to work this sort of thing out so there was no rush. To go get Shane from the airport and then come on over. I hung up the phone. I looked and Jen and she asked me if he got a heart. All I could do was nod and then I started to cry. My baby was getting a new heart!!
I called Shane. He was on his way to the airport. When he answered I told him we got the call. He didn't understand what I meant. All he knew was that I was crying. He panicked and asked me what was wrong. I told him... WE HAVE A HEART!!!
We got to the hospital about 10. Around midnight, they figured it would still be a while so they told us to go try and get some rest. We came back to the room and while we were laying down, Lilly woke up and saw her Dad. She then stayed awake for the next 3 hours. She finally fell asleep and then the hospital called and said to come back around 4am. He was suppose to go in about 5:30am but it kept getting postponed. We could never find out if they had actually seen the heart or if there was a possibility it could get called off. Around 8am, we heard they still hadn't seen it then 5 minutes later, they had and were on their way. Talk about a Roller coaster!!
Noah was wheeled into the operating room at 8:30 am. We waited in a family room and the transplant coordinator came and gave us updates every hour.
He did really well and we got to see him at 3:55 pm. He looked so sick. So many drainage tubes and wires. But here was our baby with a NEW heart!
He has had his new heart for 5 days now. He's doing about as expected. He was so sick before that now that he has a healthy heart, we have to wait for the other things to heal (like his lungs and his stomach) and wait for the heart to recover from being cold for so long. The Drs are confident that he will start making major progress within the next few days and he'll be released to the Ronald McDonald house soon. Then, if we don't have any rejection episodes, we will get to go home to Salt Lake in October.
I am so thankful my little man has a new healthy heart and that Shane was here when he got it. I am thankful for all the prayers and faith on his behalf that got us this far. And I am eternally grateful to our Donor Family and difficult decision they made to help save my baby's life. This past month has been a very surprising rocky experience. One I never would have imagined that I would experience. But it has strengthend my faith and enriched my gratitude. And when Noah grows up, I will forever tell him the story of how he was in the prayers of so many and received the greatest gift ever before he was even one month old.
Happy Birthday Noah!! Your first month has been so tough. But your strength has taught your mommy so much and you have already made my world a better place. I love you so very much sweetheart and I can't not wait to hold you and kiss you and give you all the love you deserve.
1 Month old and a new heart! You truly are my miracle!
With Much Love, Crystal at 6:21 PM
Tuesday, July 10, 2007
There are no words that can express my overwhelming gratitude.
Somewhere there is a family who suffers. And yet, in the midst of their suffering, they had the strength to give me a miracle.
My heart aches for their loss and I pray everyday that Heavenly Father will bless them with overwhelming comfort and help sustain them through their tragedy. I wish there was some way that I could thank them for being so selfless and charitable but I haven't found any words that could possibly help ease their pain. But if I could, I would want them to know that not a day will go by for the rest of my life that I won't thank my Heavenly Father for them. I know their loss is unimaginable, but because of their Christ like Charity, another mother won't have to suffer that same loss.
Thank you, from the bottom of my heart, for saving my little boy and being the miracle that I've been praying for.
With Much Love, Crystal at 11:15 PM
Noah is doing well. He is now considered to be Serious but Stable. When I went to see him today they had already removed his 3 drainage tubes AND turned off his pacer. The pacer wires are still in just incase they need to turn it back on but as of right now his heart is able to keep a fast enough heart beat. His heart still isn't 100% yet but that's to be expected and it will continue to get better. His pressures are a bit high but they are not too worried and he has finally started to pee off all the extra fluid. The transplant Dr said she thought he would start improving quickly over the next two days and should be able to come off the vent within the next week.
Please continue to keep him in your prayers. I know that is the constant prayers and faith of everyone that has helped him this far and he can still use those blessings.
With Much Love, Crystal at 10:57 PM
Monday, July 9, 2007
Noah has a new Heart!!
I got the call Friday afternoon that there was a potential donor and Noah went into surgery at 8:30 am Saturday morning (07/07/07... 777). I've been so busy during the day and so tired at night that I haven't updated my blog but I wanted to at least let everyone know that all the prayers and fasting helped Noah to only spend 12 days on the transplant waiting list. He is still critical and isn't out of the woods, but we are finally on the road to recovery. I will post the full story very soon so you can all see how the Lord worked the wonderful miracle for us.
And THANK YOU again for all the support and prayers. I am so gratefull and I know our Heavenly Father heard you.
With Much Love, Crystal at 10:04 PM
Wednesday, July 4, 2007
Noah's cath procedure was postponed until Tomorrow morning. So he goes in about 830 am. The Drs decided to wait for a few reasons. One being that it's so risky, they wanted a full staff on hand and the surgeon to be there.... just in case. Worst case scenario: They tear a hole in his heart and can't stop the bleeding so the surgeon has to open his chest and try to fix it or he ends up on ECMO (a heart/lung machine that they can't be on more than a week tops). Very risky indeed. It makes me nervous but at the same time, I think he will be OK because I really don't think its his time. I truly believe he will get a heart and come through all this. The main question is how long will it take and how sick will he get.
As always, your prayers are sincerely appreciated.
With Much Love, Crystal at 9:23 PM
Monday, July 2, 2007
The Dr's have decided that the pressure in Noah's heart is still really bad so they need to go back in and stretch the hole in his heart even bigger. They will never be able to get him off the vent with the pressures so high and it's very important to get him off because it will help make him stronger for transplant. He will go in tomorrow afternoon or first thing Wednesday morning (it was suppose to be tomorrow morning but the lab is having power problem... *shrug*)
The Dr also mentioned that the Surgeon might decide he needs surgery to place bands around the veins into his lungs. This would compress them and keep them from getting too big. His heart is causing him to have really bad pulmonary hypertension. And I guess they are starting to worry about causing lung damage so they think the bands might help. I haven't been able to discuss this with the Drs really since they just mentioned it during rounds. So when I have more information I will post it. But I do know that this would be a surgery not just a cath lab visit. Instead of doing from the front of his chest it would be an incision under his arm (Like Tyler had to close his PDA). They also might stint open his PDA at the same time so he can come off the PGE meds that are currently keeping it open. But they haven't decided that yet.
I want to thank all of you who have posted such supportive comments on my blog. It's comforting to know that you are interested in his progress and praying for him.
With Much Love, Crystal at 9:01 PM
Today at the Ronald McDonald House, I met the Mom of a little girl who had a heart transplant 1 month ago. She is only 18 months and they didn't even find out she had a heart problem until 4 months ago. She only waited a short time and then was released from the hospital after 2 weeks. I also met a teenager who had her heart transplant in April. She waited for her heart for 23 days and now She gets to go home on Saturday. The mom and daughter are from Utah too. It was very reassuring to see such a cute little girl and such a healthy looking teenager both who recently had heart transplants. It gave me hope that Noah will be healthy after he gets his new heart too. I didn't realize the hospital did so many heart transplants. But I guess thats why they are the biggest pediatric cardiac transplant unit in America.... lots of pratice.
With Much Love, Crystal at 8:55 PM
Every time my phone rings with a Colorado number or a No Caller ID, I hold my breath. Could this be "The" call I've been waiting for? Do I dare to hope?
I received such a call today. I held my breath as I said Hello. "Hi, this is Bethany from the transplant team." All I could think was "Oh, please. Oh, please." Instead of being the call I was hoping for, they had called to tell me since Noah needs to go back to the cath lab to restretch the hole in his heart, they have decided they needed to up his chances of receiving a heart quicker by posting him as ABO Incompatible. What that means is now he can receive any heart regardless of the blood type. Most of these types of transplants have been done in Canada with great success. It's said that babies don't begin making anti-bodies for different blood types until after 6 months old. So if we give him a heart with a different blood type before then, we can trick his body into accepting it. The only thing they do differently is right after surgery they give him slightly higher doses of immunosupresents than if it had been his blood type. I asked the Transplant Coordinator if this would really help his chances of getting a heart quicker and she said it would since now he has several options. He is waiting for a normal transplant, he's on the list for a DCD heart, and he can get a heart regardless of blood type. Plus, he's listed as a 1A which means he's the top of the list. I sure hope "The" call comes soon.
With Much Love, Crystal at 8:46 PM
Sunday, July 1, 2007
Today, July 1st was the day Noah was due. Tomorrow he turns 3 weeks old. Its crazy to think how my life has changed in the last 3 weeks. And its sad to think my baby is almost a month old and I've only held him once. But, I am grateful for every day I have that little man in my life. I love him so much that I would sacrifice anything for him. It's hard to be away from home and not get to see my husband or my family, but I am so thankful that we had a place to come that can give my son a new chance at life. I'm thankful for places like the Ronald McDonald House and all the generous people who bring in meals each day. I never in my wildest dreams would have imagined I would be here but I am truly thankful that here exists.
I spend every day waiting. Waiting for the next Dr. visits, waiting for the next procedures, waiting for a heart. Even though Noah is very sick, I know he won't be sick forever and I don't want to forget about waiting for the normal baby milestones either. I know his milestones will be different or delayed, but he still has them. Tomorrow he is 3 weeks old. You only get to be 3 weeks old Once in your entire life. And his first 3 weeks have been super tough so for him to be 3 weeks is AWESOME! He is still a super cutie and all the nurses just adore him. He's gained almost a pound since he was born. That is a grate milestone too.
........ I still can't wait for the transplant milestone! ;)
With Much Love, Crystal at 4:01 PM
Yesterday I had the local Bishop and Elders Quarum President come and give Noah a blessing. For some reason they didn't anoint him so when I ran into the Missionaries at Church I asked them to come today. So, they came after church to give him another blessing. They had spoke with the Bishop and he said they didnt use oil incase it would contaminated etc. But I didn't think it would be a problem and explained that was why I asked them to come today and give another blessing so he could be anointed. They gave him a wonderful and simple blessing. They blessed that he would have the strength to make it through the waiting and the heart transplant surgery. That he would go on to live a long and healthy life and fullfill his mission in life. It gave me great comfort and I was very grateful that they came.
I was suppose to meet them at 1pm at the CICU (Cardiac ICU) but on my way up to the second floor, I got stuck in the evelvator. For some reason it just stopped working. Me and another lady were stuck in there for about 10 minutes. But at least it just wasn't moving instead of moving in the opposite direction. I made the Missionaries wait, but I made the nurses laugh. They all thought it was quite funny.
With Much Love, Crystal at 3:55 PM
I went to visit Noah today and the Dr said he would need to go back to the cath lab to restretch the hole in his heart. They don't think they stretced it big enough the first time since it didn' lower his pressures very much. They said his left atrium is still very large. We should know tomorrow if it happens tomorrow or Tuesday.
With Much Love, Crystal at 3:51 PM