Monday, November 14, 2005

Working Our Way Out

Clare is working her way out of the ICU. From a heart standpoint, she is ready to go. However, she is having trouble feeding, so that is what is keeping her put for now. It's crazy how complicated everything can get.

Clare has an IV (a central line) in her jugular in her neck. This is the only way she can receive IV nutrients, such as carbs, lipids, etc. But if she's not eating by mouth and not eating by NG-tube (the nurses have tried for two days to get a tube in - the night nurse tried again last night and it made Clare vomit), then the central line has to stay in so Clare continues to receive nutrients. However, she cannot be transferred out of the ICU with a central line in because it is too dangerous if something went wrong with that line. The IV in her arm went caput, and an IV nurse was finally able to get an IV into her foot two nights ago. Yet as Clare's nurse told me, "It's in the smallest vein I've ever seen an IV go in!" (Clare is a VERY hard stick - partly because of that adorable baby pudge, but mostly because she has been stuck so many times that there is much scar tissue in the way). So that foot IV is pretty much useless except for an occasional blood draw. The IV team are going to try and get another, better line in before they take out the central line (and I say, good luck to you!).

The issue with feeding is that Clare is having trouble nursing. She shows signs of hunger (and should be hungry since it's been 7 days since she's eaten), but is not nursing well. It could be due to the position of the central line (hard to get into a comfortable nursing position), all the sedatives she has been on that she is still very tired, and a sore throat from being intubated. Today, the nurse was finally able to get an NG-tube through her nose by giving Clare some Reglan (a drug often given to babies with reflux) beforehand to relax her GI system. The Reglan did its job, so now there is the option of tube feeding Clare as well. While she has the NG-tube in, I can still nurse her (and she is being fed only breastmilk through the tube anyway).

So after a lot of shuffling around and experimenting with different things, I think the plan is to continue to try nursing Clare, but to primarily feed by NG-tube for now. We may be stuck in the ICU one more night to be sure Clare is doing well with the tube. If that goes well, her central line can come out, and she can be transferred out of the ICU. Once we're on the cardiac floor, Clare won't have that central line and hopefully she will have more energy. Then she can start nursing more and feeding through the tube less. I don't like the idea of Clare being fed by a tube, but if that's what it takes to get her strong and healthy again, then that's what it takes.

1 comment:

Anonymous said...

Teresa & Shawn,

I hope you are printing out a hard copy of this blog. (including this area where people post their message's to you and Clare) I read your posts and think to myself, how much is one child expected to endure?? How much is a parent expected to endure?? Not that you have a choice, I realize that too, but to be able to keep your unwavering faith and the positive attitude... all I can say is that I have the utmost respect for the two of you. And Clare for that matter
( and Jamie too :) ) Anyway I just wanted to mention a hard copy of this because when she is old enough to read this and fully understand it from a "Mom's perspective" only then will she fully understand the depth of the phrase
"I LOVE YOU"

Happy Anniversary to both of you!

Still thinking of all of you!
Sincerely Mel & Terry