Yesterday I posted about our 'new normal'. Unfortunately, our life is anything but! Last week when Matt went to chemo, they checked his endocrine panel and his sodium went up (again). People with brain tumors sometimes have diabetes insepidus - and Matt is one of them. His high sodium is what landed him in the PICU (pediatric intensive care unit) upon diagnoses of the brain tumor. They have increased the medication that helps his kidneys process the sodium, but it isn't helping. He was stable when he left the hospital, but his sodium is not staying in check. Right now it is 165. Normal sodium levels are 135-145, and high sodium can cause lots of problems, as can a high sodium level that comes down too quickly. We also have the unusual complication of Matt not being very thirsty. Usually people with DI are VERY thirsty and have to make sure they don't drink too much, but because of the tumors location, it affects Matt's thirst center, making him not thirsty. So we've spent this evening tracking down the endocrinologist on call and trying to figure out what to do. He's on the maximum dose of DDAVP already, so there's a possibility that a trip to the hospital will be in order tomorrow. The endocrinologist I spoke with was interested in speaking with our regular pediatrician tomorrow. He thought that maybe with some help locally, we might be able to avoid a trip to SLC. I sure hope so!
On a brighter note, we heard today about the second opinion:
Just wanted to update you on the process of the review. We looked at Matthew's studies today in our conference and are in agreement with the interpretation of the scans. Dr. Burger (the neuropathologist) is still in the process of reviewing the pathology specimens and I think he was asking your hospital for the original block which would allow them to cut more sections and do some additional studies. That might take a few days to complete.Once he's completed his pathology review, I'll be in touch. I suspect I'm going to be in agreement with the proposed plan, but I want to withhold judgment until I've heard Dr. Burger's opinion regarding the pathology.
So, it looks like they will be in agreement on both diagnoses and treatment. This is good news - it gives me confidence in my doctors. I am a little worried that the pathologist wants to do more testing, though - hopefully he is just extra cautious!
I had the most bizarre conversation with Matthew this afternoon when I picked him up from school. As we were driving, Matt said, "Mom, I know it's not really playing, but it sounds like there is music playing in the car." I asked him if he would sing the song and he said it wasn't a song with words, just a melody. When we got home Matt said again, "Mom, I don't remember anything that happened at school today except the music Mrs. Blair was playing." I absentmindedly asked him what music she had been playing and he replied, "Bach."
This exchange has me rethinking my assumption that he won't do piano this year. We were really excited to begin lessons with the youth conservatory at the university. They have fabulous teachers. Anyhow, I started thinking that perhaps keeping up in piano lessons would be a good way to work on his short term memory. I have always felt like music had healing properties, and they have done studies showing music lessons help kids brains develop. If I can find a teacher interested in working with Matt, I think we'll try it out. It can't hurt anything, and it would be wonderful if it helps!
Wish us low sodium tomorrow!