Tuesday, June 28, 2011

We Are Home

To start: Henry and I are home. :-)

To back-track: Thursday evening, a couple docs from Neurology returned to re-hook-up Henry for a second EEG study. Once again, the RoboHead look. Yuck. I hated it the first time, i was definitely not pumped for the second time. For two main reasons: 1) This study greatly limited my freedom of movement with Henry. If i thought he had too many wires before, this made it look like nothing, and 2) the first study left several sore spots and some scabbing, from reaction to the electro-gel used to conduct the study. Poor lil bugger's sensitive head did not like that. And now he had to go through it all again. But i understood why, and supported that reason...

And so fast-forward... it was now Saturday morning, and Henry had shown zero activity. Again. Murphy's Law, as they say.

Right off the bat, Sam does his "usual" and makes Hank SMILE!
It was also Saturday morning that Ron, the kids, Shirley and Dad were coming to visit. That was a nice time - albeit slightly stressful. The kids were great, actually, being themselves and quite behaved for the closed quarters. But Ron and I were a little off, and so it made for some slight tension. Shirley happily volunteered to stay in the room and rock Henry while the rest of us went out for the day. That, unfortunately, turned out to be more than she had bargained for. Because of Henry's new anti-seizure med, he was irritable and squirmy. Nana was not able to console him like she usually does, so the afternoon was spent just trying make everyone comfortable. He never did take a nap, like he so peacefully usually does.



On our end, Ron, Dad and I took Sam and Thom to a place called Adventure Landing, that my friend Julie recommended. It's basically a big play center for kids. There's a "Wow Factory!," with foam balls everywhere, and outside, were four Bounce Houses - those big inflatable 'jungle gyms.' Those were the two places we focused on. We had also purchased tokens to use in the arcade, but the arcade sucked. Mostly car-racing games that Sam's short legs couldn't reach, or games that won you MORE TOKENS, which i certainly didn't want. Even the skee ball was a little run down. But boy!... Sam and Thom wore themselves completely out between the Wow Factory! and the bounce houses. It was sheer joy watching them smile and enjoy themselves. At one point, Thom was playing a game outside - bounce in a house, come to Mommy for a hug... bounce in another house, come to Mommy for another hug. I could have played that lil game for an eternity.






We returned to the hospital to hear of Shirley's day (ugh!) and as it was late, decided to get everyone together and head out. I held on to Sam for a ridiculous long time and started to cry, to which he petted my head and then gently stroked my cheek: "Don't cry Mommy." Eek!!! I just missed everyone so much. Soon they headed out and I was left once again, just Hank and me. He didn't fall asleep until 8:45 (for the first time, really, all day!). I went back to the Ronald McDonald House and conked. All week i had been frequently awoken in the middle of the night with horrible leg cramps. That night was no exception. And i was eating my bananas! Man, they hurt.

Sunday morning, i was greeted with a fussy Hank. No smile hello, just whining and crying from the git-go. I held him, rocked him, sang him the Alphabet Song... nothing worked. In between these moments, neurology visited to say they would remove the EEG monitor later that day. With no activity for close to 72 hrs, there was no sense in keeping the wires on his sweaty little head. I couldn't agree more. Closer to wireless FREEDOM! The neurologist on call for the weekend also agreed that with no seizure activity or blue spells in all this time, there was really no reason to stay, and so he was going to recommend discharge. Again - i was in agreement. The floor physician also agreed, and so discharge was in the works; she's also the one that told me that his GI study results were negative of anything unusual happening with this nissen, the surgery to control the reflux. By 4:30 pm, i was signing the papers and we were ON OUR WAY!

I checked out of the RMH, gassed the car and hit the road. I wanted to surprise Ron, who had to work, by stopping by the store with Hank, and surprise him I did!!! It was really nice to be back in town. Both boys greeted me with HUGE hellos and yelling "MOMMY!" when i got outta the car. Ahh... HOME!

So since being home, over 24 hrs now, there has been nothing. Nothing, that is, except for Henry's very noticeable altered demeanor. I originally thought it was teething - he's been highly irritable, ansy, arching and wiggly, and just an overall ICK. But then i recalled reading all of these behaviors are side effects of the Keppra, the new med in his life. I put a call into neurology and waited all day for a return call. In the meantime, Henry just cried and whined and was particularly clingy all day. I was unable to easily leave him, put him down, etc. Dr. Augustine returned my call in the evening to say that there is an adjustment period of about 2 weeks. If Henry is not better at the end of next week - more himself - we will definitely look into changing to another med. But i'm hopeful that he needs that time to adjust; Keppra is known for being relatively 'kind' to one's system and other organs, and existing heart condition, such as in Hank's case. I look forward to the gradual return of Sweet Henry Huggins. I miss him immensely!

Until next time... here's to blue-free Love and Laughter...

1 comment:

  1. I am so glad to hear that you are home. I'm sorry that Henry is "not himself" and hope that he adjusts to the new meds quickly. You know where to find me, please let me know how I can help. Renata

    ReplyDelete