This week we were in Houston for a series of appointments. Several of the appointments held surprises that caught me off guard. I will admit, I came home physically and emotionally exhausted. I have had some people ask though, so here is a brief breakdown:
Pulmonology: Alex's respiratory status is the worst it has ever been and has been steadily declining for years. We discussed several theories and her feelings are that his GI status, specifically his bloating, is effecting his lungs. She feels like his extreme bloating is pushing into his lung space and not allowing his diaphragm to collapse completely. She can't help this at all. The other change is that she wants to trial Alex on oxygen overnight. We will also repeat a sleep study on one of our next trips down.
GI: Dr. N wants to once again challenge Alex's body to see if he can handle not getting IV fluids daily. We have tried this multiple times in the past and always had to go back to fluids or TPN. We will go back to doing labs weekly to see how his body handles this as well as measuring his urine output. We are also trying a new medication when he has increased stomach pain. We are doing a round of antibiotics to see if we can decrease the bloating that could be due to small bowel bacterial overgrowth.
Neurology: Dr. K is concerned about his very poor hand strength and continuing neuropathy despite medication that we have increased multiple times. These both could be related to his syrinx (fluid in his spinal cord). We will repeat an MRI of his spine and brain as soon as possible to see if there has been any change. We are also keeping an eye on his "shaky" feeling for now as it could be quite a few different things.
Immunology: Dr. P continues to be thrilled with the change in Alex since starting immune replacement therapy. She also was going to talk to Dr. J about his respiratory status.
Endocrinology: Alex continues to struggle with significant hypoglycemia. However, Dr. R is pretty sure it is related to his poor liver function so again not really anything to do for it. He is already fed 24 hours a day. His growth has also slowed down, but there is a pattern of his gropwth being good on TPN and slowing when he is only on tube feeds. He does want us to continue to use the continuous glucose monitor as an early warning system for when the hypoglycemia reaches a level that needs to be treated.
The week was made so much better because we got to enjoy time with good friends. Sure does make these stressful trips better!