Home Is Where the Heart Is

We were released from the hospital yesterday and our first night home went pretty well. Dominic went 13 hours yesterday with no spasms, but then six hours later had an episode. Dr. Arndt assured us it's still early and to not lose hope. We have to look at the overall trend over a few days as opposed to one day at a time. So, if two days from now he's had less episodes on average, that's a good thing. If they have not completely stopped after two weeks, they will probably take him off the ACTH and assume it's not working. At that point we would head to Detroit for a surgical consult, PET scan and second opinion from Dr. Chugani. He will also be scheduled for genetic testing to determine if he has some chromosomal abnormality that is causing the spasms. It's hard to pinpoint genetic disorders, but they want to test, just to rule other things out. If it is a genetic disorder, there isn't anything different they would do to treat it, it would just give us an answer. We're reminded once again what a guessing game this disorder is.

Getting his hearing test

While he was in the hospital, the Infectious Diseases doctor put him on an anti-viral because of the CMV he had in his blood/urine. Even though his levels were low, suppressing his immune system with the ACTH could cause the virus to reactivate. He also mentioned that congenital CMV can cause permanent hearing loss. So Dominic had a hearing screening, similar to the one he had when he was born (which he passed then). Unfortunately, he failed this one and now has to have a diagnostic hearing test to determine if he does in fact have hearing problems. Mike and I looked at each other like "great, add it to the list". This poor kid, how many more things can we find wrong with him this week!

Our visiting nurse came this morning and says I'm already a pro at giving the injections, I guess that's a good thing. Dominic is a champ when it comes to getting them too, he didn't even cry this morning! He actually hates getting the other 7 medications more. We can tell he's happy to be home and off all the monitors and wires. He just seems so at peace in our arms, in his own house. He's not as cranky and irritable as I expected, although I'm told it might take a few days before that kicks in. He was actually alert this morning and I even caught a few smiles!