6/28/09

When we arrived in TX and started with the new GI (stomach doctor) I told him about Tomas's painful feeding episodes. He ordered a fluoroscopy and it showed a significant sliding hiatal hernia. He would scream in pain for 45 minutes. It was awful to say the least. Then the doctor ordered him back onto a continuous drip and changed his formula to Nutramigen. I didn't like the continuous because it doesn't give him a chance to vent unless I stop it and vent for him, but I can only tell he needs it if he starts fussing, and by then it can be too late and he is screaming in pain again. So I now give him one ounce every hour with a bolus and vent before every feed during the day. At night he is on the pump but with a vent opening attached so he can push the gas out as needed while he's sleeping. I can't do that during the day because it is rather the homemade thing with medical tape and an open syringe and all sorts of stuff taped to him and the side of his crib. Works great while he's laying still, but that's it. I have been using that pattern since last Friday and he has only had two painful feeds. However, last Tuesday at 4 am (of course - these things never happen at 4 pm!!) he was a little fussy and I got up to look him over really well and noticed that his belly was swollen up around the G-tube. I unhooked his feed and cleaned up the tube area as best as possible and he fell back asleep. At 7 he woke up and the swelling was still there. So I took a shower thinking I would call the doctor afterwards. By the time I was done the swelling was gone. I thought well as long as his daytime feeds go ok I won't bother with it. At 8 I hooked up the extension kit to do the bolus (remember he hadn' had anything since before 4am) and about 25 cc's of clear/bloody liquid came out. I took him into his GI doctor. They did a fluoroscopy and didn't find anything significant. The doctor thinks it might be some irritation of the stomach lining by the balloon and is treating with some medication. By the time he saw the doctor the swelling was gone, but later in the radiology dept. the doctor stopped by and the swelling had started back up again. He was stumped. Thought maybe it might be a weakness in the abdominal wall. Tomas is not bothered by any of this and is still taking his bolus' fine. Next up is an overnight stay at Dallas Children's Hospital on July 20th to place his ear tubes, do an endoscopy of his upper GI and an MRI of his misplaced artery. He will be under general anesthesia so they are keeping him for observation. Now for my miracle. To begin with I have to describe the first GT study that Tomas had. He was laid on a board on the exam table and had his legs strapped down to the board, his abdomen strapped down, and his arms raised up over his head and that whole thing strapped down. Then the board spins so the doctor can get the pictures at the angle he needs. Just think rotisserie chicken. He was terrified and screamed for almost an hour. It was close to the worst I've seen him go through. Flash forward to Tomas and I in the same room as that torture test. I tell the tech that the doctor only ordered x-rays. She says no he wants a full GT. I start trembling inside. I really can't believe he has to go through this again. Immediately I start praying. "Lord, please - rearrange time and space to free your Blessed Mother so she can be here with my son." The tech strapped all of Tomas to the board and he didn't make a sound. he just sucked on his pacifier and looked straight at me. He only made a small fuss for about 10 seconds when his pacifier fell out about halfway through. I've often wondered what it would be like to have faith the size of a mustard seed and to be able to move that mountain. Oh, to be able to live all of my life with the amount of faith I had during that quick prayer! I will update if anything new comes up.