Tuesday, March 13, 2012

Wow. Just... Wow.

We left the hospital on March 12, and went to the Ronald McDonald House in Rochester to clean up our room and check out. We tried to feed Nolan lunch, but he wasn't interested in food.

His lack of eating nearly earned him an extra day in the hospital, since the doctor wanted to do a calorie count, but we told  him we'd keep tabs on it at home. If he wouldn't eat, we'd have to start supplementing him with nighttime feeds of Pediasure.

He wasn't eating well this morning, either. We took him outside for a walk, and he finally admitted that his tummy hurt. I gave him some Motrin, and voila! He started to eat again! He's not eating normal quantities yet, but he is eating much better than he was. He ate 1 1/2 slices of toast and half a tub of yogurt for lunch. This is definitely a relief! He is not a child who will complain about pain, so the lack of eating in the hospital was due to the fact that the nurses discontinued his Tylenol - he "wasn't in any pain, so he didn't need it." Many kids display pain by withdrawing from activities, though, and they should have recognized his food refusal and inactivity as a sign of pain. The medication is working well at the moment, so we're alternating Tylenol and Motrin to keep him eating.

In the hospital, he only wanted his medication via the g-tube. The PICU nurse was really difficult about this, but our surgeon told us that we should give the meds via tube - once the tube is out, he won't need the medications anymore, anyway. As it turns out, the minute we got home, he wanted the medications by mouth. He simply didn't like the new and different medications (Prilosec instead of Nexium) given by the hospital staff.

He isn't bloating with the use of the C-Pap (air can get pushed down and not be able to come back up because of the fundoplication wrap). We haven't had to vent him for air - he was a little bloated from food (his belly gets round and tight), but we're leery of venting him for food because if you vent off those stomach contents, he loses a lot of calories. Essentially, venting stomach contents is the same as vomiting - we don't want him to lose those calories. We watch and wait, and so far the bloating always goes down within a couple of hours. We're watching that situation, but he seems to be doing decently so far.

The worst part of the fundoplication so far has been food getting "stuck." This happened a few times in the hospital, usually with macaroni and cheese or small bites of pancake. Nolan's surgeon told us that it feels like having a heart attack. When food gets stuck, Nolan is in agony, drool pours out of his mouth, and he turns sheet white. We try to give juice to clear the stuck food, which is why he's only allowed to have "dissolvable" foods right now. Toast, yogurt, pancakes, and food of that nature is safe for him. He cannot have things like meat or untoasted bread quite yet. We're close to trying some other foods, because he only had one very minor "stuck" incident today - as the swelling from the surgery goes down, this should become less and less of a problem.

He is playing and having a great time being home. His voice is clear - the raspy voice quality has disappeared. This is a great sign that the reflux is gone.

His hospital stay was only 5 days - very short for a Nissen Fundoplication patient. He is doing amazingly well, as long as we keep giving him Motrin and Tylenol.

Dearest Reflux, how I have hated you. Good riddance!


Laura's medical journey said...

aw bless him sounds like hes doing well.
good that hes eating "easy" food that goes down easily. if i hadnt had that banana i wouldnt have nearly died lol
glad the relux is gone and hes free from pain!

Kyla said...

Sooo glad he is doing excellently!

Herding Grasshoppers said...

That all sounds like such good news! And going home is always good medicine. Hope you're all getting some sleep,


tammy said...

Wonderful Leah! Just absolutely wonderful! I'm so glad you all are home and everything went so well!

TheSweetOne said...

Hooray! Glad Nolan is doing better. Glad you're all home again. Is there a chance he won't need the cpap in the future?

Bill and Shelly said...

I have not had the chance to get on your blog, so I am reading through the posts.
So glad to hear that Nolan is home and is doing better. Home is always so much better than a hospital.
Hoping that you are on the upswing of things and soon life will get back to normal, whatever normal is these days.

Liz said...


Any time of the day that I think of Nolan I lift him up in prayer. You both are my hero! I hope this surgery is everything that you hoped it would be and more.

God Bless!