Monday, August 3, 2009

So sorry this took so long

I know I've been gone for awhile. I apologize. I left you all hanging with the last news that I was worried about Matthew. Here is the story for those of you that don't have facebook :)

I talked with the doctors Monday morning about what we'd been seeing with Matthew. Everyone involved agreed that he needed at least an EEG. Omaha, however, could not get him in for EEG until Thursday. His doctors in Minnesota and I both felt he couldn't wait that long. If the 'episodes' we were seeing were indeed seizures, then Matthew was seizing a good portion of the day. None of the medications we had given him seemed to help these 'episodes'. So by 5:30 we had approval from Minnesota to be admitted there the next morning. Monday was a stressful day; filled with phone calls and tears. For awhile we thought maybe we'd get to go to Omaha, that they'd squeeze us in; but with no luck. Then the possibility of flying also came up; but we decided driving was better. Then we found out we had to get approval from Matthew's insurance to go out-of-state; and I didn't get this news till 2 o'clock. I was glad when Matthew and I were finally packed in the car for Minnesota.
We left about 9:30, thinking Matthew would sleep most of the way. WRONG. Many stops and lots of screaming ensued for the next 6 hours. I finally gave up getting there at 3:30 am and just stopped and got a motel. Matthew never did sleep that night; but I crashed for about 3 hours. We had to be on the road again by 7:45 to make the final trek.
Tuesday was filled with more xrays, tests and EEG's. In Minnesota, they have the ability to do 24 hour EEG. After some time hooked up to EEG, it was determined that he was not having seizures, but was definitely in pain, and was also having a neurological response to this pain. So we had to figure out where that was coming from. They did do hip xrays along with other bone xrays; and all looked good. We decided it would be best to give him some relief from all of the chaos going on in his body; and gave him a strong dose of Valium. This, however, did not make him sleep, but did calm his raw nerves and helped him relax.
After 48 hours of EEG and numerous tests, nothing could be found, except one thing: on one xray, it showed that Matthew had a belly FULL of air. Dr. D, Matthew's epileptologist, said that we could possibly just be dealing with some very painful gas. Seriously??? Gas????? He said that there was also a possibility that he was having some teething pain, which caused him to cry, and swallow air, which gave him more pain, when caused more get the drift. A vicious cycle. So we started a regime of venting his g-button (which lets out trapped air), ibuprofen and orajel (even though his gums look no different than they did 5 months ago....I'm not sure I believe the teething thing). and guess what, my sweet baby came back! As for all the jitteryness and rhythmic twitching that everyone, pediatrician and neurology nurses included, thought was seizure activity; well, it's not. What it is, we don't know. But, if it's not seizures, then we won't give him any additional medication.
I was a bit embarrassed to think we traveled 6 hours for gas pain, but Dr. D. reminded me that even the doctors back home thought he should come, so not to blame myself. It's sometimes hard to figure these things out when Matthew can be such a complicated little guy.
We were dismissed Friday, but instead of coming home, we went to my parents house and Steve and the kids met us there. My grandma had her 80th birthday party (that is my next post) and we got out of the hospital just in time. Then we drove home late Saturday night. Oh, does it ever feel good to be home! I can't wait to crawl into my own bed; which by the way, I should do (especially if you see what time I am typing this)


Michelle said...

Thanks for the update, I've been thinking about you. Don't feel bad, I once drove Owen three hours to the emergency room at Duke because I thought he was leaking CSF onto his bandages after a shunt revision. Turns out he was just sweating under the Tegaderm! And gas can be incredibly painful for a little one, so I'm happy that they were able to relieve his discomfort!

Tyler said...

I always say better safe than sorry. We made a 2 hour trip before for gas issues too. It may be somewhat frustrating but at least you are on top of things if something ever went wrong and you can rest assure.

Diane, Tyler's mom

Sweetest Girl in the World said...

Oh my gosh - how comforting to know it was only gas. We immediately think of worst-case scenarios when our little ones are in pain or acting different. And, it's always best to rule out those first, no matter the distance you travel or the tears.
I'm happy to hear you're all home and he's your happy little guy again!

Kristen said...

Stop worrying, it's working out great!