News

My, what a busy month February is turning out to be. I was sure it was just one of those blah winter months! Well, it is... but it is strewn with doctor's appointments, birthday parties, and frequent trips for Shaun to Virginia (for work). I will be glad when this month is over....

So here's the news. Gabe started out the month with a change to his Phos-K (phosphorus and potassium). The manufacturer no longer makes the powder form he's been taking, so one of his doctors switched him to an IV form that can be given via g-tube. After about a week or so of taking the IV form, his urine output started to slow down. He was just NOT peeing as much as he usually does - concerning!

So Diane and I had to take Gabe down for a 'sick visit' to check his kidney function- the last thing we need is kindey failure. After a day spent in the BMT clinic, it was discovered that Gabe's kidney function was okay, but he might be trending towards dehydration. It's a tricky balance trying to give him enough fluid so he's not dehydrated, but not causing him to be fluid overloaded.... bad for his lungs and heart.

Sigh. I remember the days when I blissfully knew nothing about any of these medical terms. I was quite content. I know way more about the human body than I ever wanted to.... For now, the situation is under control. We have increased his water and the doctors decreasesd his Phos-K slightly, and he, thankfully, has been peeing like a champ ever since then. Thank you, God.

This is Gabe in the midst of everything we are dealing with. Always so amazingly happy and joyful:



Gabe's neurology appointment went wonderfully. Even on a bad snow day and detoured from I-95, Shaun and I made it to the trip in one piece... we have come a LONG way in our travels with Gabe!

The neurologist hadn't seen Gabe for a year and was very happy to see Gabe MUCH more awake and responsive since a year ago. He didn't feel the need to do an MRI or head scan because his level of conciousness is better (not worse) and that's a good thing! Gabe just had an EEG today to check for seizures. We have a script for seizure medication that we may be giving Gabe depending on today's results. AND, in the write-up that we received a week later, the neurologist stated that Gabe's pupils were reactive! Woo hoo! We have never actually heard that his pupils were reactive... last we heard from "Dr. Doom" at Children's was that Gabe had no response and was basically not worth keeping alive. So this was exciting news.

Gabe goes to his cardiologist next week. He will hopefully be coming off his Viagra (which he takes for pulmonary hypertension, which he's had since 3 months old). If Gabe comes off it, it'll be a huge step! Please pray for this doctor's appointment and for me to be able to get the Viagra refilled before the appointment - insurance issues. Bleh!!