Friday, June 20, 2008

All Is Well

We are home and all is well!

What a week. I'll be posting a FULL update of our trip to Denver over at Memoirs of a Mommy very soon. But here is the Noah update:

We took Noah to The Children's Hospital bright and early Monday morning. While at the lab waiting to get his Cyclo level checked, we ran into Julia and her mom. She is a little girl who got her heart transplant last month and her Mom recently joined a Support Group called Heart Beats that I am a member of. So that was neat.

Then we went to get his Echo and EKG. The Echo didn't go so well. Noah was so tired and grouchy since he hadn't eaten and he just wasn't having it. Then we got to see a friendly and familiar face, Alice our EKG Nurse. She is as sweet as ever.

The actual Cath was delayed until about 1:30 due to the previous Cath taking longer than scheduled. But since Noah refused to drink anything, they decided to give him an IV early so they could get some fluids in him. But, since he is a professional kicker (I have the bruises to prove it) they decided some Cloral Hydrate would be in order so he would sleep through the IV. This worked out great and he ended up sleeping the entire wait until his Cath.

He finally was taken in and I got to follow him over to the Cath Lab. Saying good bye to him was hard. He was completely asleep which made it a LOT easier. I gave him several kisses and off he went.

Shane and Lilly had come with me to the Hospital so I wouldn't have to wait alone, but during the extended waiting time, Lilly ended up pooping through 8 pull-ups and that was all we had brought with us to the Hospital. So Shane had to take her back to the RMH and I ended up being alone anyways. But it turned out OK. I had company... I'll explain in a minute. But I felt so bad for Lilly. I think she was just so nervous. She knew Noah was "sick" and I could tell she was worried. But Shane said she got back to the RMH and went right to the play room and had a wonderful time.

After Noah went in and I went down to the cafeteria to eat. While there, I met up with Julie, Lacey and Jacob. Julie is Alan's Grandma. Alan is one of the most precious little boys I have ever met. Julie found Noah's blog while surfing for info on Heart Transplants and contacted me. It was SO nice to sit with them and get to know them. Not only are they wonderful and friendly and funny people, but it helped me not sit and stew and worry about Noah.

After lunch we got to go meet Alan (he's waiting for his heart transplant so PLEASE remember him in your prayers). And let me tell you, he is even cuter in person. He slept most of the time I was there but that didn't keep his special spirit from touching me. It actually reminded me quite a bit of what it was like to visit Noah while he was waiting for his Heart. I have NO doubt that this precious child will be getting his new heart. I just hope he doesn't have to wait very long.

After Noah's cath was done Dr. Pietra came and talked with Shane and I. (He finally came back ;) ) This is what he said:

Everything looked great with one exception. Except its not really an exception, more like an asterisk. Noah's pressure's were good, his Aortic Arch isn't smooth, but there is NOT a Coarct. There doesn't seem to be a thickening of any of the veins or arteries but you can't really check that for sure until he is older. But the asterisk part is his shortening fraction. It's the stiffness of his heart. When his heart opens back up after a beat it doesn't open up big enough. Now we have known from the beginning that his new heart was stiff (I have NO idea what causes this. I have wondered if it had to do with the time the heart was on ice as it was almost 6 hours but I was told it wasn't). He has been on the Verapamil since the beginning and on the same does. We figured it would help and he would slowly out grow the the dose. Problem is, it hasn't helped or at least enough. What should be around a 4 is actually a 12. Not a good number. BUT, at least it's not a 20. THAT would be bad. So, we needed to wait to see if there was any rejection in the biopsies as that could cause this. Then Dr. Pietra could decide what we needed to do. Early the next morning, Alison (who I got to see since she was back from Maternity!!!) called me first thing and didn't make me wait till noon. And told me what I already knew but LOVED to hear...


This means Noah isn't rejecting his heart!! He gets to reduce his clinic visits and lower his immuno-suppressant. Actually gets to come off one of the meds and lower the dose of the other. GREAT NEWS!!

So back to the shortening fraction. Since we now know it's NOT rejection, I am waiting to hear from Dr. Pietra to see what he wants to do and how we should treat it. But like he told me in the recovery room... Don't be worried. Everything looked great with the exception of that weird asterisk and lets face it, its Noah. It wouldn't be Noah if there wasn't an asterisk involved. :)

Another great thing, we decided to have the Lab send me all the supplies I need to take his blood myself and FedEx it to Denver so we can check his level using the method we are used to so we don't over medicate him. This is great for two reasons: One, we can get the right level so his Cyclo level can be managed correctly and Two, because now I don't have to go up to the hospital at the Butt Crack of dawn to get his levels drawn anymore. I can do it from home!!!!

The next day Noah was really puffy and weak. He was also tethered to a Holter Monitor (a portable EKG) for 24 hours. But he quickly got better to my relief and before I knew it he was crawling around and getting into things like usual.

So, we got to see Alison (We LOVE you Alison!!), Carrie, Dr. Pietra, and some of our favorite Nurses. We got to meet Alan and his wonderful family. We got to meet Julia and her Mom. We had a wonderful outcome with Noah's cath. Noah did well and recovered beautifully. And we even fit in a few family fun things to boot. All in all, I would say it was a great and yet very tiring trip.

One last thing... this morning Kendra from the Denver Ronald McDonald house was at the Aurora house and I was able to give her the Thank you note and donation in Noah's honor. So a HUGE thank you to those of you who gave (Your names were included in the Thank you note):
Mom and Dad, Julie, Jeannie, and Jen.


  1. Oh Crystal, all I can do is smile after reading this post! I'm so glad things went smoothly! I can't wait to get together and play! :)

  2. I am glad that the cath went well and the greatest news is that he is not rejecting the heart. Go Noah!!
    Really I need to still get you that bear!
    Heart Hugs,

  3. I am so glad that things looked good. What a blessing that he is doing so well!

    hugs & prayers,
    Christina Davis
    from IHH
    Jacob's momma

  4. I am so glad that everything went well with Noah's cath lab. Beckham also has a "stiff heart." I was not told this by the doctor, but I noticed it in the doctors notes that we get sent after an ECHO. I asked the doctor about that and he told me that it was due to the heart being out of a body for so long (which was less than 4 hours). I am surprised that you were not told the same. Also, I notice that you wrote about how you have had to go to the hospital to get blood draws. That is so unfair to you. We have a nurse that comes out to draw Beckham's blood, do weight checks, give Synagis shots...etc. I wish you had the same. What a trooper you are!

    Yeah for going down on meds for Noah! I can't wait to see you in a couple of weeks! Finally!!!

  5. Yay Noah! You are a fighter!

  6. Hooray!! So glad for good news!! Hey, do you have the code for his button? I would love to put it on my blog.

    Could you email it to me if you do?


    Pam and Rhett


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