(Cracked wall courtesy of house crashing, teen driver. How’d she walk away from that?)
Corrigan’s virus turned out to be roseola, talk about a crazy rash! We are still dealing with daily vomiting and I put in an anxious call to his team who have made a 3-day change to his diet in hopes of giving his digestive system a little break. It is a bit tricky cutting back on his protein since he has had weeks of less-than-optimal nutrition from all of the vomiting lately, but he is obviously nauseated most of the day and the frequent puking is piling on even more anxiety for him around eating/swallowing.
I have so many concerns, when we got the g-tube I never expected that we would slide back to nearly 100% tube fed, but here we are and it stinks. He is never going to make positive strides in his eating until someone figures out why he is so nauseated. I have concerns about his esophagus and stomach, he had peptic ulcers when he was a toddler and I worry maybe they have returned. His stomach also empties very slowly which causes backup as the day moves along and more timed feeds are added, and I also wonder if he has developed a milk sensitivity.
I want a better answer about his tonsils because every single medical professional that looks into his mouth makes a remark about how large they are, but no one wants to put him under unless absolutely necessary. He needs anesthesia for a repeat endoscopy so I wonder if both can be done at the same time?
I also have concerns that his g-tube was placed too high on his torso because as he has grown, it now is nearly sitting right against his bottom rib. It breaks my heart to think we might need to re-position the g-tube, and leave yet another scar on his little body, but we are obviously far far far away from ever saying goodbye to the feeding tube, we may have no other choice.
Corrigan is doing well otherwise, though he is extremely pale with dark circles under his eyes. He looks like he hasn’t slept in a month, when in fact he is sleeping better than he has in a long time. The labs from our recent ER visit showed that he was anemic again, but due to his stomach issues, his team has pulled his iron supplement from his daily regimen, to see if that might be causing him distress.
The poor boy is a happy mess. He is still laughing and learning, sleeping well and playing normally so I can’t complain too much, but I am hoping that we can make some changes that will help him back to better health very soon.