Monday, September 26, 2011

Luke's GI study results + new seizure activity + casting opportunities shot down before even being tried = A way too long post all about Luke

Finally a long overdue update about Luke's recent GI tests that he had done. The Endoscopy procedure came back showing no problems, except for perhaps some yeast growing, but even then they weren't 100% that is what they saw. The Dr. perscribed Nystatin for the yeast infection, but after trying to give it to him in his mouth twice I came to the conclusion that it was not worth having him choke and aspirate on it and to be honest I didn't see any signs of yeast infection in his mouth.After hearing the news that all looked fine I asked the Dr. if we still needed to do the ultrasound and lower GI x-ray study and he said that we could skip the ultrasound but he still wanted to do the lower GI empyting study. That happened a week ago and we won't hear the results from that until Luke's GI Dr. appointment on October 4th. I figure though if they had found anything really bad they would of contacted us by now.

Here's Luke and I at the hospital during the GI study waiting for another x-ray to happen

The lower GI study they did was a very long and tedious procedure. I had to have Luke at the hospital by 8:45 am and we didn't leave the hospital until around 2 pm. They started by putting barium down his g-tube and then taking an x-ray, then we had to take another x-ray every 30 to 45 minutes for the next few hours to see how fast the barium was going through his GI tract. Needless to say I had quite a work out as I had to lift him up out of his chair onto the table over and over and over again. I hope that is the last time we have to do one of those studies.

Here's Luke still at the Hospital 4 hours later waiting for another x-ray to happen

I'm so happy to say that Luke seems to be doing better lately than he's been in a long time. We actually got to go to church two Sunday's in a row, which was the first time that's happened in months. That said we still have to deal with the challenges of him alarming off and on all night long, as tonight it's been especially bad for the alarms going off, that is why I'm sitting here at 2:30 am blogging. Though I'm trying not to complain about it since Gordy let me go to bed early last night and I got to sleep an entire night without any interuptions, boy did I need it I was severly sleep deprived.

Luke's been having some bad seizures lately, so after calling his Neurologist it was decided that we are going to try out a new anti seizure medication called Banzel. We are just waiting for the prescription to be filled as our pharmacy doesn't carry this medication. I will be honest I have put off calling about this problem for awhile, I just don't like what seizure meds do to Luke, but Gordy and I have come to the conclusion that we need to get these seizures under control. I hope and pray that this medication will be the answer to helping Luke stop having these seizures without causing him to lose any attentiveness that we've gained over the years.

At the beginning of the summer I had talked with Luke's rehab Dr. about perhaps splinting his ankles to see if we could help train his feet to go back to there natural place, you see his feet have been pulling up into his legs lately because of his muscle tone issues. I found out from his PT last week that she along with Luke's Dr. and one other PT at the place Luke goes to for Physical Therapy talked without me there about whether this type of casting would benefit Luke. To be honest I wasn't very happy that I wasn't involved in this meeting as I would of loved to give my input being Luke's mom and knowing him better than they do of course. They decided to once again to do nothing for Luke's legs, ankles, feet, etc. which has really upset me because you see they put all kids that have suffered from near drowning accidents into the same catagory, you know the catagory of being hopeless, erk. After our talk last week it was decided we might still try it as it does seem to be one of the few options we have for helping Luke's leg issues. I told his PT that if we continue to do nothing Luke is going to get to the place were we are no longer able to take him our of the house as he won't be able to sit in a car seat anymore because of his legs not bending. That to me is not an option, we have always tried to include Luke into most of our family outings and which is not an easy task but one that we realize is vital to keeping our family together. I will let you know of course what they ultimately decide about the casting issue.

Lily asked me to take this picture of her and Luke while we were visiting my mom and dad last week. It's so nice to have my parents so close they are only 5 minutes away now.

I continue to hope, believe and have faith in God for Luke's complete miracle healing. I have been encouraged by some amazing prayer times at some evangelistic meeting I've been attending lately. God is faithful and I believe Luke will walk and talk again one day, my greatest hope is that it will be soon.

Love in Christ,
Luke's Mommy Sue

PS Please continue to pray for the Mom's coming to the retreat next month, I listed all their names in my last blog post.

1 comment:

Jean said...

Annie was on Banzel, or Rufinamide. She had a good response to it, but we had to wean up very slowly, then space her dosing out 4 times a day, (6 AM, 12 PM, 6 PM, and 10 PM) because giving too much at one time made her incredibly nauseous. I'll pray that it helps Luke!