Friday, July 29, 2011


We have been in our 1 bedroom hotel suite (with a tiny kitchen) for 34 days. 5 people, 2 dogs, 27 pounds of Special Needs eqipment and 34 days. 'nough said about that! Delay after delay keeps popping up on the closing of our NY house. We were supposed to close on the 15th, at this point the earliest will be the middle of next week.
Our belongings have been trucked up from storage in TX only to be moved to a storage in CT; just waiting on an ok to unload. My husband may have an aneurysm soon, he took off work last Fri. to do a walk through on the house. It only took the morning but he was so stressed he just took a long weekend. That NEVER happens. Having a super stressed out husband hanging around you for 2 days, let alone 3, is the opposite of fun.
Luckily, I have an amazing friend here who is keeping me sane, and letting me use her home as needed when our space gets too cramped. I also met some moms from our new homeschool group last night and everyone was very friendly, so super glad about that.

I knew moving to NY and starting over with new doctors would mean lots of tests for Tomas. He has seen endocrinology, GI, ENT, and Hem/Onc so far.
The endocrine doctor took away his lovely synthroid compund because she says it is not stable and they don't use it at the hospital. His thyroid levels were off otherwise I may have fought her over it, but instead I am back to crushing the pill and chasing the mixture of water/med all over the bowl with a syringe to make sure I have drawn it all up. I love me a compounded med with a syringe top bottle! Sigh...She is waiting on his medical records to come up from Dallas to proceed with the Growth hormone/hypoglycemia testing, but for now is sticking to the strict no fasting orders for him.
GI: This could be it's own post so I'll try to summarize.He ordered a tube study, barium enema, upper GI, endoscopy and weekly/monthly lab work. The tube study showed his GJ perfectly placed (in case the bile/formula reflux from the J into the G was due to the tube being out of place). Sorry guy - no easy answer there. The barium enema showed no microcolon - again no answer. Yesterday Tomas had the upper GI with small bowel follow through. The radiologist puts barium into the stomach and then takes x-rays at timed intervals afterwards to see how quickly it moves through the GI tract into the colon. After 5 hours it was still in his stomach. Score! Hoping for some good info to come out of that one.
ENT: He ordered a sleep study, swallow study, laryngoscopy, and bronchoscopy. He doesn't think Tomas' desats are due to true obstructive sleep apnea, he wants to look for a laryngeal cleft. Also, one of Tomas' ear tubes is out so the dr. will clean out both ears while he is under, do the hearing test, and then replace them. I'm curious to see where his hearing is without the tubes in. He did tell me that any vagus nerve damage that is causing the GI issues would not be affecting Tomas' swallow. He still has so much difficulty swallowing without aspirating. That's where the cleft comes in and possibly that right subclavian artery that is out of place.
Hem/Onc: She just reminded me of the risk of TMD babies transistioning to AML by the age of 5 (Tomas has enough friends who have gone through this that it is always in my mind). His neutropenia requires more testing so she tagged on to the GI's lab orders. Since his platelet count is usually normal and his platelet function is always normal she feels like the petechia are most likely due to weak blood vessels. Not sure what the means for Tomas. I was absorbing too much other info and will have to ask at the next visit. At the end of the appt. she brought in her nurse to get blood from Tomas for labs. This is almost comical. He has a port - it should be a breeze to get blood. But blood return is not my friend. The nurse was fantastic; she hooked the syringe up to his needle but alas, no blood return. Then she started cajoling Tomas into making sounds which would cause him to inhale and exhale deeper giving her just a drop of blood every time he did. For about 15 minutes she worked with him to get enough blood so she didn't have to stick him. The doctor was undecided about what to do about the port. Since we could at some point get blood from it, the problem could just be positional with how the needle is placed in the port, but because this happens even after needle changes, she also wants to do an x-ray and dye study to see if that is definitely the case. I'm a little aprehensive about that because it could mean surgery to replace the port. Not a huge surgery, but still.

Tomas is doing ok. A couble of small antics but on the whole the TPN is working and keeping him home. He was dehydrated on last weeks labs due to an increase in G drainage, so the volume on his tpn was increased. A few months ago that would have meant an admit, but now he is stable and  hydrated, allowing me to not stress too much over the continuing GI issues.