 |
| Sleeps with his eyes open, just like his momma |
We continued the feeds through the tube and tried to recover from the previous 2 nights of not much sleep. Jason spent the night Saturday night and he at least got a real bed, although he said it was pretty hard. So I brought some foam up to help with that. They let us go home on a pass after his 10am feed. It was so nice to see Allison and Jordyn and be home!! Caleb took a nap in his own bed but woke up after an hour because he was constipated. Poor guy. We fed him through his tube while he was home and everything went find with that. We came back around 7pm and got settled back in. Sunday night was a little better, I let him sleep with me, he wasn't having any of that metal prison they call a crib!
Monday-
Caleb had a sonogram to check his liver, kidneys, and pancreas. It's something he hasn't had done before and Dr. Adams thought we should. Not really connected to the feeding tube stuff, more about the Mito stuff. (he couldn't eat before the sono, but they did give him half a feeding afterwards. Only 2 oz! I guess they wanted him to be hungry for the next test) Then he had a feeding evaluation at noon. An OT and a speech therapist came and basically watched him eat. They brought a few different textures and wanted to watch how he did with them. He didn't really give them a lot to look at, he was pretty stuck on his jelly toast and the oatmeal. He was so tired from 3 nights of pretty crappy sleep that he almost fell asleep in the highchair. He did fall asleep after it was over and woke up about an hour later in the dentist's chair. The dentist brushed his teeth, said they look good and sent us on our way. We did talk about his diet and how the g-tube would effect his teeth, but that was about it. Then Caleb came upstairs and crashed. I think he slept for almost 4 hours. It was more interrupted than at home, but he needed the sleep really bad. Over all he was pretty grumpy and lethargic all day, so it was good that he got a few naps.
Our wonderful neighbors brought us dinner and he was very excited to see them. It was the first time all day he had smiled. (hard to believe I know!) So we ate and chatted with them for a while. It was Jason's night to stay and he said it went pretty good. Oh, Caleb has thrown up a few times since we have been here. Once in the middle of the night, and once during the day. He did throw up Monday night as well though. They are monitoring and trying to look for a pattern I think. He slept a little better, although Jason ended up sleeping in the rocking chair with him some of the night.
 |
| During the emptying study |
He wasn't allowed to eat this morning either. :( We had to leave at 10 to head over to Children's. We got checked in and they needed to check the placement of his tube to make sure it was where they needed it. So they took an x-ray, they ended up needing to pull it out 2 cm. The worst part was taking off the tape! But they got it where they needed it and we headed back to the nuclear medicine department. They fed him formula through his tube that was mixed with a mixture that would show up on the machines they had him under. The test was called a gastric emptying study. They wanted to look at the rate at which his stomach empties which would tell them if there is a problem with his guts. He was pretty upset they had to tape him down to the table (just over his chest and stomach) and then they brought down this huge thing just a few inches from him. Because he is so small it was really close to his face as well. He tried to push it up, but that didn't work so well. He cried for the first few minutes, but they had Barney playing and that distracted him for a while, then Jason and I took turns reading him some books. It was an hour long and I thought he might even fall asleep, but not quite.
 |
| Passing the time during the hour long test |
We ate at their cafeteria afterwards and then went upstairs to see another Mito friend! We met them at the meeting in May and they were there because she was having issues with her tummy too. (although she already has a g tube) So we chatted with them for a little while and then headed back to Scottish Rite.
Dr. Adams stopped by and gave me some pretty good news. First he said that they got the Upper GI from last August and said everything looked good there, but that Caleb had reflux. Um what?! They never told us that!! I was pretty aggravated that we could have had him on some medication this whole time! But anyway....He had the results of the study already! Caleb stomach empties at about 38% an hour. A regular kid is in the 45-60 range. So Caleb's is in the mild to moderately late category. They are going to try and manage it with medicine and hopefully that will take care of it. They will also start him on Prevacid tonight.
 |
| Cousins <3 |
Last awesome thing. Caleb will now need a pump, bags, and formula for his feedings. These things are pretty expensive and our insurance covers nothing. However, this kid is crazy blessed. The dietitian has a pump that a family donated that she will loan it to us for as long as we need it. (we are currently switching insurance so that MIGHT cover it, or we are applying for Social Security for Caleb, and we are putting him on the Medicaid waiver wait list. (it's for Medically dependent children but there is a 2-5 year wait list. We will see what God can do with that!!) So the $2500 pump is taken care of. She (the dietitian) also just had someone donate 40, yes FOURTY, CASES of the formula that Caleb uses. That's 24 cans in a case. He currently uses 3 cans a day (which will probably increase to maybe 4) That's almost a YEAR supply!! Wait we aren't done yet. Then I asked about the bags that the formula goes in. Yea, the $5 a piece bags that have to be changed out each day bags. Oh, yea she has 9 cases of those to give us!!! Holy cow!! I mean how blessed can one kid be?!
I'll end with this; I question why this is happening to my baby sometimes. I tell God it's not fair. I cry out to Him to heal him. But one thing I know for sure, God is with us on this journey that we didn't ask for. He has never left our side. He goes before us and paves the way. That has been very clear from day 1. And that is the best thing I can hope for right now.
1 comment:
Our God is amazing!! Just praying for you this morning that the surgery would be soon, then read your blog that it is Thurs.!! We never do walk alone. You are always, always in my thoughts and prayers. No words to express my heart.....
Post a Comment