We met our new, wonderful Gastroenterologist on Wednesday afternoon. He spent a lot of time with us, listened well, and came to two reasonable conclusions. I was so relieved that an infection wasn’t one of them!
Problem #1 is that it seems that the pain meds Abbie needed after she fractured her femurs (much more than she needed after hip surgery) slowed down the rate at which her stomach empties. This allowed for a build up of acid, which appears to have really targeted the irritated area inside her stomach where the balloon that keeps the G-tube button in places rests. It is also giving her reflux at this point which explains the extra secretions, the vomiting at the end of meals, and why she can’t tolerate her usual feeding volumes or rate. He started her on 3 months of Prevacid to give the ulcers a chance to heal and deal with the reflux. I am not fond of acid-blockers because they hamper nutrient uptake, but in this case we don’t really have a choice. I did confirm with him that this is a short-term option. After her dose this morning, her muscle tone just about disappeared. She was so relaxed on my lap in the rocking chair that I didn’t want to move, ever. So, it seems the acid, the ulcers and the reflux have been greatly increasing her muscle tone lately.
Problem #2 is that, as she has grown, her G-tube button has ended up right under her ribs. You really can’t touch her button without feeling ribs. This means it is likely that the stomach lining is getting rubbed between her ribs and the balloon each time she breathes, move, coughs etc. It is worse when she sits up, which explains why she cannot tolerate sitting at more than a 45 degree angle, and even that is difficult after a while. What a conundrum. People with reflux need to eat sitting straight up, but her button pain prevents this…leading to worse effects from the reflux. The button has to be surgically moved. Ugh. Can I just admit that I am REALLY weary of seeing the OR recovery room, and of having to put Abbie under anesthesia.
We decided to try another type of G-tube button in her tummy to see if that would buy us enough time to coordinate this surgery with the trach closure surgery I was planning on scheduling later ,in the Spring, thinking that her ENT would not close the stoma during the winter.
Abbie was in so much pain last night, I called the ENT’s office to schedule “sooner rather than later”, thinking it would mean March. Iwas shocked when her nurse said, “Oh! I have a hole in next Friday’s OR schedule. Let me see if I can get the GI and surgeon coordinated for that time as well.” Ummmmm – hold on, let me gather myself. Back to the OR in a week? Another groan. But, it would be great to get our girl through this and out the other side.
I am still waiting to see if the docs can work their schedules out for 2/6, but if not it seems that we will certainly do it sometime in Feb. Would you please pray for Abbie’s comfort until then? She didn’t tolerate her first feeding, and then couldn’t even keep water down when she was in the stroller for her appointment.
On the very bright side: we saw her orthopedic surgeon today and he was pleased with the Xrays, saying her bone strength is sufficient to start standing and going to PT again. I put her in the stander tonight, just to see how she’d do. She stood for 10 minutes, which was longer than I’d expected, and she stood at a higher angle than I thought she’d tolerate. She was VERY relieved and happy to be standing. Many smiles. Afterward, she fell into a peaceful and contented sleep, even with four noisy brothers in her room.
I think that what I see as mountains or hurdles, Abbie just sees as “the next thing” and is willing and anxious to get on with it. She humbles me.