Us After ICU

I was so excited to get out of the hospital, I almost forgot how chaotic my life is.  No matter what though, I couldn't wait to get home to my baby.  I missed being next to him so much.  I came home to my little man still not feeling good.  When I took him to the doctor, I found out that he had RSV and an ear infection.  My poor baby.  I felt so bad that I begged for him to come see me in the hospital.  Even with his mask on, he was exposed to all kinds of stuff.  He had to be on antibiotics for 10 days for the ear infection, and as for the RSV, the doctor said it was just something that had to run its course.  My little trooper was feeling so down in the dumps.  Then, to put the icing on the cake, he started having diarrhea from the amoxicillin.  Mind you, this was almost a month ago now, and that is just starting to get better.  Since he doesn't eat table food, it's taken longer for his stomach to repopulate all the good bacteria that was wiped out from the medicine.  I have been trying to get him to eat a little yogurt, and that's been going well actually.  Hopefully my baby's stomach gets all the way back to normal soon.  Other than that though, he has been doing much better lately.  He is definitely got all of his energy back, and then some :), but I am not complaining at all.  I love when my little soldier is feeling good, it makes me feel great!

LJ's lab work has been a little funny, well, actually just his tacrolimus level (one of his immunosuppressants) has been very low.  It's just funny because it has been so stable on the same dose for a really long time, then all of a sudden the value was undetectable.  The doctors in Boston have suggested that maybe I needed to start using a new bottle, which I have done, and also increased the dose a little.  So I will be going on Monday to have his labs rechecked, and I'm praying that things are looking better.

Now, me, I have a new routine going for myself now.  My neurologist put me on a seizure medication.  I was nervous about starting one, because I was scared of what it would do to me, and how I would feel.  He put it to me best when he said, "You worry so much about what will happen if you take the meds, what you should be worried about is what will happen if you don't."  That line ran through my head about a million times when I left his office.  He said he couldn't force me of course, but he strongly recommended it, and I said I would try to start in a couple days.  After thinking about it long, and hard, I decided it was more than likely the safest option I have.  I am so scared to have another episode like I did in January.  I almost lost my life, and I thank God that my son didn't get hurt.  Lord knows things could have turned out so much worse.  So, I have been on zonisomide for the past 3 days for my seizures.  So far I haven't noticed any side effects, but it has only been a few days.  I did a lot of reading up on it, and I didn't see anything too bad compared to some of the other seizure medications,   I would be lying if I said that I am still not nervous, but I don't really think I had any other choice as long as I want to do all I can to keep my baby, and myself safe.  I'll keep y'all posted on how I do with it.

Feelin' better... I love his life