Tuesday, August 7, 2007

Are We Leaving the ICU??

Noah was doing much better today. He looked good and his pressures were good. He wasn't having such a hard time breathing and he hasn't had any ectopy (weird heart rhythms) in a few days. His lungs are still damaged but they are getting better. Since they were so damaged with having a bad heart for so long which caused the Pulmonary Hypertension and Edema and then they were even more damaged after the transfusion reaction, the Dr said it will be a long time before they ever look normal, if they ever do. She doesn't know what if any long term damage will be there but she doesn't suspect it will be too bad. But it is reasonable to say he will always have weaker lungs than a normal person his age.

They have weened him off one of the blood pressure medicines so they kept his ART line in to continue monitoring his blood pressure more accurately than a cuff but since it was been good today, they will remove it tomorrow. They also said it's very likely he will be moved upstairs to the regular inpatient rooms and out of the ICU tomorrow. It's good to know he's getting better enough to be out of the ICU, upsetting because I know he won't have such one on one care that he gets in the ICU, and scary because I don't know if I dare believe this will be the last time we are in the ICU. I just don't want the Dr's to rush his recovery. I know he will recover, but Noah has already proven to be stubborn and difficult just like me. He will get better on his own terms and his own time frame. If they rush him too fast, he might backslide again. So I just hope this time its for good. His NG tube is still past his stomach and going into his intestines, so one thing we will have to work on for sure is his feedings. I just hope we can get that under control before they say we need to switch to a G tube (where it goes right into his stomach isn't of up his nose and down his throat). Like the poor kid doesn't have enough scars already! They have such a hard time getting veins for PICCs and IV's that he is poked all over his body with bruises and marks and they still come up empty handed. Not to mention his transplant scars, the drainage tube scars and his pig tail scar (the chest tube for his collapsed lung). But one good thing about him having them now, he will learn about them just like any little kid learns where their belly button is.


  1. They aren't scars they are battle wounds. They will have cool scars with amazing stories. Some of his scars are sad.. like the burns on his belly and his skin tears but how happy we are to have him.

    The only positive about a g tube is the ability to get those meds in with no spitting them out!!

    We are so proud of you Crys and so proud of Noah. What a trooper. Can't wait to get these tough spirits together. They must know something that we don't.

  2. Crystal,
    Noah is so darn cute! I can't wait to meet and hold him!!! I'm so happy to see posted some good news regarding his health and am praying that he will be released tomorrow to a regular room. . . as long as he's ready for it. I'd be hesitant just like you, but we'll pray Heavenly Father will encourage what is best for baby Noah. As for the G-tube, like Nancy said, at least they can't spit their meds out. I know I don't have a baby with one, but my friend Jess's daughter has one and at first it can be scary, but they're pro's now!!! We'll just hope he starts eating good on his very own. He's proven to be a trooper, that's for sure! Ok-sorry for the novel! Love, Jen

  3. I am so happy to hear that he is doing better, slowly but surely. We never had the NJ, but we do have the G and we have had the GJ. One suggestion is to switch over to the G sooner than later. I love our G tube and I am pretty sure that Kayden has a lot of his eating problems because of the NG going down his throat. I have always said that I think every child should be born with a G-tube specifically for medication purposes!

  4. Crystal and Shane,
    When Noah gets older Dad and I will buy him the T-shirt that Dad has laughed about for a few years. It reads "CHICKS DIG SCARS" :)
    We LOVE You Both,
    Mom Brown

  5. Crystal and Shane
    You made our day with the latest update. Obviously, all the prayers have been heard and answered. It takes so much time, sometimes, to see the blessed results, but we do know who is in charge! Oh, he is such a darling little fellow. We send our love,
    Aunt Marilyn and Uncle Bill


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