Tuesday, March 15, 2011

Before and after lip pictures


Sorry....I cannot seem to organize them on here for some reason. But you get the picture-from top to bottom lol

Thursday, March 10, 2011

Home tomorrow!

So the swallow study did not go well at all. He was aspirating, quite a bit. It is unsafe for him to have anything by mouth for now. We are not sure if he's having difficulty now because of the rsv issues or the seizures causing neurological damage or maybe a combination of both. Either way, he has to be fed by a ng (nasogastric) tube for now. They want to put in a gastrostomy tube, which goes through the abdomen into his stomach, but he's been through so much and he does not need anymore stress on his little body. Plus, anesthesiology wants him to be symptom free from the rsv for 6 weeks. They plan to do surgery in about a month. I am still hesitant about doing the surgery in general though. I feel that Nick has had a setback from everything he's going through and I feel that he can recover and return to feeding by mouth, but it will take some time. To me, putting in a g-tube is a permanent solution to a non-permanent problem. Maybe I'm wrong and he will need the g-tube long term but I feel that he deserves a second chance and time to recover from everything he's been through. They plan on doing another swallow study in 6 months, I think I might try and push for another one earlier. I don't want him to loose everything he's learned, from all his oral skills, then have to start all over when they think he's ready. We will work closely with occupational therapy to keep developing his oral skills while he's using the ng-tube and hopefully he won't loose anything he has learned so far. We have been trying to do a gastric emptying test for a couple days but he has too much barium in his intestines from the swallow study to do the test yet. They will try again tomorrow morning to see if they can do it. Otherwise, it's another appointment we'll have to make.
But the good news is we get to go home tomorrow! We are so happy to get out of here and get home and try to get things back to normal before possibly having to go back for another procedure....
Thank you everyone for all the prayers! We appreciate every one.

Monday, March 7, 2011

Are we ever going home?

Well Nick is doing good. I think. His oxygen saturation levels are not good when he's off the oxygen. And last night they had to increase his oxygen to 1/2 a liter. Which is not a lot at all but he was on 1/16th of a liter for a long time. I am sure he needs to be suctioned more, probably deep suctioned too. He is eating a lot better, back up to 5 oz now. We had OT come by and she suggested that we add a thickener to the breast milk along with the formula we are already adding. The formula was for extra calories. So he still likes his milk with pedialyte and combining all these things together is pretty gross. After it's thoroughly mixed it looks like and has the consistency of yogurt. Yum. And I'm not sure if it's just the combination of things or its the pedialyte but parts of it can be chunky and clog up the nipple so it doesn't come out. Then when it does it shoots out like a water gun. Nick doesn't like that and neither do I. I already have to squeeze his bottle harder then it gets clogged and...oh my what a mess! But at least he's not choking on it when he eats anymore, that's amazing! He will have a swallow study done today, well hopefully today. Then we will know more about how much he is aspirating.
Thank you all so much for reading and for thinking and praying for us. It's been tough while in the hospital, we can't wait to get home.

Wednesday, March 2, 2011

Slowly getting there

Nick is doing better, slowly. He has not had a seizure since Monday-yay! The Keppra seems to be doing its job. His breathing is much better as well, he is not laboring to breath anymore. Unfortunately, he has to stay on the oxygen for awhile longer. Every time we try to take him off of it his sats drop to 88 or 89ish. So his bronchiolitis is from RSV. The initial rapid test was negative but the attending doctor said that they have had a couple rapid tests come back negative but the culture came back positive. So at least we know what caused his issues. He started to eat a little last night but this morning is refusing the bottle again....hopefully he is just tired.
On a brighter note, his plastic surgeon came by this morning and said his lip looks great. But it will probably take a little longer than normal to heal just because his body is using so much energy for fighting off infection and recovering from the seizures.
So to be able to go home Nick has to be off the oxygen and eating normally for 24 hours. Hopefully it will be tomorrow, but it's not looking too promising. I am not pushing anything because I want him as well as possible before bringing him home, I want to know he's okay.
It's been hard for Brianna and Benjamin while we've been at the hospital. We try to bring them up here but it's hard for them to be constrained to such a small area and not being able to touch anything! But they are troopers and will bounce back as soon as we get home and are able to spend some time together.
Thanks so much for all the comments and prayers, each one means so much!
Thank you for the continued prayers and hopefully we will get home soon!