Today was a little better for our sweet Ellie. The report this morning was that her chest tube output had slowed down quite a bit and they were going to hold off on the surgery again. It seems like we just need her to be on the surgery schedule in order for her to stay out of there. They were able to start feeding her and planned on giving her a bottle instead of her being fed through her tube. With the intensity that she had with her wet sponge swab anyone would have thought she would have sucked that bottle down without any hesitation. Much to everyone's surprise, she did not like it. The nurse tried for about 45 minutes to get her to take her bottle and Ellie would just push it away so she ended up putting it in her tube to her stomach. Afterwards Ellie was able to fall asleep and be as calm as anyone has seen her in a few days. She probably just needed something in her stomach.
Later, Mike was able to hold her and tried feeding her a bottle again. We tried peaking her interest with the wet sponge swab but once we tried the bottle she did the same thing as before and pushed it away. We thought we could trick her and dip the swab in the formula but she didn't go for that either. If she could live off of water we wouldn't have a problem. They say that the fat free formula does not taste good and Ellie is definitely showing us signs that she doesn't like it. She would have to be on the fat free formula for 6 weeks to prevent the chylothorax from recurring. The nurse said that they would keep trying but most kids would suck it down after not being able to eat for so long. We thought that would have been the case with Ellie. If they can't get her to eat the fat free formula they might challenge her with regular formula. This is another one of those "wait and see" situations where they have to see if the feedings will increase the fluid discharge again. If she eats the regular formula, it could also trigger the chyle to drain. If there is any increase in drainage she will go to surgery. If Ellie could get rid of the chest tube and start eating on her own I think we could probably go home.
I was a little frustrated today because yesterday it seemed like the only thing that would make Ellie happy was being able to eat which we didn't think would happen for a few more days. So when she was finally able to eat she didn't want to. Being fed (through her tube) did calm her down a little but I think Ellie is still going through withdrawal symptoms from the medications. She is showing signs like fevers, diarrhea, and tremors and the doctors decided not to wean anything today. They can usually control withdrawal by giving another dose of the medication that she came down on but any medication that they give her does not seem to have any effect.
Ellie has had so many difficulties and unexpected complications during this whole ordeal. It has been a very trying 4 weeks but I am so grateful that we aren't the family that has had to deal with having a baby in there for 5 months like the baby across the hall who had to be resuscitated today, or the family who had to deal with losing their baby last week. This journey has been one of the most difficult things that we have had to endure but we have been so blessed.
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