HBOT Pics

I know a lot of people were curious about exactly what Jackson does for this...so here you go! Basically, he lays in a tube and watches videos for a little over an hour. He doesn't seem to mind it at all. This is what it looks like.

Some good news and a cute picture (or 2)

The good news....insurance is actually paying for the HBOT!!! Absolutely amazing! I sure never expected that and I know the lady who deals with the claims at the hyperbarics place didn't either.

And the pictures...

Jackson is definitely tolerating being close to Dizzy for longer periods of time now that he is not such a spaz. He put up with him for about 5 minutes before he started feeling yucky while I took these pictures . He even looked like he might be enjoying it a little bit.

A couple crazy days

On Monday, I got a call from Jackson's school nurse saying that his tube had come out...balloon intact. She can not reinsert it because it is a GJ tube and can only be placed in interventional radiology. So she taped it in to hold the stoma open.

We have a spare G button that we keep on hand for emergencies that I was able to insert until we were able to get a new GJ placed. Luckily, Jackson was already scheduled for a GI appointment yesterday. The GI nurse was able to schedule a tube placement in IR with no problems.

He actually did better than I expected with the G-tube, he gagged a few time, but no vomiting. And I have never placed a G-tube before, so let's give Mom a big round of applause.

The appointment went ok. The plan is to put him back on the baclofen, at the same dose that was not helping anything before. (Not sure what the issue is with raising the dose, it is a miniscule amount for a kid his weight.) He ordered some labs (to make sure he was not getting dehydrated with all the bile he has been putting out) and a small bowel follow through (to rule out an obstruction) for after his tube change since he would be in radiology anyway.

Also, we saw the nutritionist. She feels that Jackson is not getting enough fluid daily, especially with the physiatrist cutting his feeds and with the bile output. So he will be getting about 500 ml more fluid than he had been and also a 1/2 a vitamin ground up in his tube every day. His formula is a complete formula (meaning it contains all necessary vitamins and minerals) but since his calorie needs are so low he is not getting enough to make it complete.

Radiology was all backed up, we got in about an hour after we were scheduled. The tube change went well. We had to push so much contrast for the SBFT that Jackson was really uncomfortable and kept gagging. I am assuming it was normal because they did not tell us otherwise, and things like that always come back normal for Jackson.

The trip home was hell. It was pouring buckets of rain, and got to Chicago just in time for the evening rush. It should have been 90 minutes, but it took us over 3 hours to get home!

Continuing saga of the bile

The bile output has improved somewhat. Some nights he barely puts out any, and some other nights he still puts out quite a lot. The GI doctor called and wanted him to get some bloodwork done to make sure that he is not becoming dehydrated from the increased output. He had just gotten bloodwork the previous week (ordered by his physiatrist, update on that appointment coming up) which I had not heard the results of yet. I had to think if it would be quicker/easier to call and get the results of the other labs or call to get an order for the new labs and get those done. I decided to just get the new ones. Unfortunately, the results of those have not come back yet. We also stopped the baclofen to see if that was causing the bile. I don't think that was what was causing it, because it is still there. We will see him Tuesday, I expect he will want to restart the baclofen.

The psysiatrist appointment was good. She was also concerned about his bile output which is why she ordered the labs, which we still have not heard about. She thinks he is getting too chubby again...at least too chubby for a severely physically disabled person. So she cut his feeds, and now he is only getting 750 calories/day. It seems like such a small amount, but he really does not have problems gaining weight. I also recently read that one of the meds he is on can cause weight gain, so that could be part of it too.

She also wrote an order for him to have a bus and classroom with AC during the hot months since he is so sensitive to the heat and can not regulate his temperature well. She wants us to keep track of his HR and BP at the times when he has his overheating problems. So we got a blood pressure cuff for him. Unfortunately the one they sent us is the manual kind that you need a stethoscope for. He is way too wiggly and the tone in his arms makes it pretty difficult to take his BP that way, plus my stethoscope is not that good. I think we will have to get an automatic one.

Not sure what is going on.

For the past couple weeks Jackson has been putting out large amounts of bile. His poops have also been different. We are not sure why. We have a GI appointment in a week and a half, so hopefully they will have some insight...but I doubt it. The GI nurse has been really getting on my nerves...I have left her a couple messages about it. The first time it took her about a week to get back to me. She told us to go get an x-ray to make sure the tube was still in the right place. So I had to call the pediatrician and get an order for the x-ray and then make the appointment for the x-ray at the other hospital. It turns out that the tube was fine. I called the GI nurse back that same day (Wednesday) and I have not heard back from her yet.

I don't really even know why we are traveling so far when they don't do anything for us. We can stay here and have people do nothing for us and save a lot of money on gas too.