February 2007 - Posts
I've been emailing back and forth with Michael's doctor at Rusk and we're hopeful that he'll get another shot there. Christine got some good information from the Insurance company - Michael's doctor was excited about it, so we're making another try.
This morning we went to the Pain Management Center here in KC to get an adjustment on his Baclofen Pump, hopefully this will give him the relief and help that we've been looking for. He seems a little better tonight, nothing obvious though. I'm a little worried that something is still wrong with the catheter.
Suzzane and Sandy, Hi! It's nice to hear from you, hope things are going well, I'll send Michael the message.
I've been pretty disappointed with the results of our trip to Columbia. I thought, I hoped that this time, just this time, maybe, things would all go the way I had hoped. That didn’t happen at all. Not only did Blue Cross say no to Michael getting a well needed and well deserved refresher rehab stay at Rusk but the Baclofen pump still isn’t doing what it is supposed to be doing. He’s had this thing for over a year now and has yet to get any benefit from it. Really the entire process of this Baclofen pump has been more than a total waste of time, it’s cost Michael a lot. As a result of this thing he’s gotten blister on his heel that took 8 months, easily, to heal, we’ve had to go round and round with Insurance on covering his stay at Rusk after the pump was put in- and we have a pretty huge bill because of that. Michael has missed a year’s worth of therapy because of the pump. The whole reason for getting this thing was to give him better progress, to relieve his stress, his tension. What a fiasco it’s been. Maybe we need to get a prayer team around this pump and exorcize it. – That last statement was a joke…. It has been a complete, literal pain in Michael’s side.
But – enough of my whining! we are fighting on – and it does feel like fighting – for Michael to get some relief of tension and to get some Inpatient therapy. We’ve made some good contacts this week and gotten some good ideas. I’m going to get him to see someone locally to adjust the pump next week. So that’s the update.
Jesse, one of Michael’s nurses, and I were talking about movies that Michael likes. I was telling her that when he was little, he could be upstairs in his room and from the other side of the house, downstairs I could– from any place in the movie - I could turn the volume up for just 2 seconds, then turn it back down and wait. Within a couple more seconds Michael would be running down the stairs saying is Back to the Future on. This is not exaggeration, we did this a few times. As Jesse and I were talking about Michael’s taste in movies she said, I tried to play Harry Potter for him, he said he didn’t want to watch it, when I kept going I think he got mad at me. I had to laugh at that. Yep, that’s Michael. He has always had something about that movie that he didn’t like. It was almost as bad as a Sony Play Station. J Michael’s quote “Nintendo rules, Play Stations are evil”
Thanks for checking in, come back and see us again.
I'm not sure what happened or how it happened or what the reason is but Michael will not be able to go to Rusk as we thought. I just received a call from Rusk and they told me that Blue Cross had denied his admission. It's hard to take cause we were so sure, they were so sure - anyway that's the news. Maybe some time later we can try again.
Right now Michael is laying in the bed next to me sleeping (we're in a LaQuinta Inn in Columbia). I hope sleeping is good for him, I hope his dreams are good. I feel for Michael in all of this, he seems to take it all in stride. So, I am hopeful that MIchael's baclofen pump will be working and that will be nice for him. I'm also hopeful that this trip is good for him, that the change of scenery even a different place to sleep is good.
Hopefully we'll no one at school and none of his nurses made any permanent plans and we'll be able to resume his home therapy on Monday.
I'm good, God has taken care of us all along and I trust in him. A friend of mine at church reminded me of a verse in Job, ch15 v13 Though he slay me, will I trust him. I don't understand it, but I trust him.
It is nice to say that.
It seems we’ll be trekking back and forth to Columbia again for few weeks. Christine talked to admissions at Rusk and they are expecting him Friday afternoon. Thanks for your prayers on this and thanks to God for hearing them. We still have some hoops to jump through…. Michael’s surgery is set for early Friday morning, pray that everything goes well in his surgery and that everything goes well after so that he gets to Rusk in time to be admitted. Last time we did this there were multiple hang-ups between University Hospital and Rusk which left him in at University Hospital for a few days – which left him with a blister on his heel that stayed for 6 months or more.
There are a number of things coming together for Michael it seems right now. His toe-nail is repaired and shouldn’t hinder his progress, if the Baclofen pump catheter is repaired he will have much less tenseness to fight through and the therapist at Rusk are just plain awesome. All this will be great for him!! I have to say that the care he’s received for the last year at home has been great too. I’m pretty picky when it comes to this kind of thing, I’ve been told too picky more than once. So when I say his care is great, it does mean something. Deborah has been with us from the time he came back home and she has been so good for Michael, I thank God for Deborah and all she has been to him. I’m very thankful that she plans on being with him when he comes back home again. Jesse started caring for him a few months ago and she is awesome as well. Both of these women have gone above and beyond in their care, they are nurses , therapists and loving friends all put together. Both of them are demonstrate Christian qualities – the kind the Bible tells us to have, not the kind we hear about on TV. I am very thankful for love and care Michael and our family has received from Deborah and Jesse. Gail has also been great, she takes care of Michael on the weekends and again, she’s been just amazing. Thanks to each of you!! I’ll miss you for the next few weeks but look forward to seeing you again when he’s back.
I can’t say thank you to anyone without including Leasa Coulter, his teacher from LSHS. Leasa is comforting and motivating to Michael, she has helped him come a long way. As well the therapists that have worked with him from LSHS, Carrie, Beth and Deanne have been great. They are all so very caring and also good at what they do. They have really helped him.
Thank you to everyone!
The trip to Columbia was good, it seems every trip includes some kind of excitement. Yesterday brought 2 changes, first we learned that Michael’s Baclofen pump is not working, he will need surgery to fix this. Second, Dr. Rupright suggested that he come back to Rusk for awhile.
So, right after Dr. Rupright saw Michael Carl from admissions came in to start the process of getting Michael back to Rusk for a little bit. This is awesome, Michael seems very ready for it, he even said he wanted to. We were told that it might be possible to get him there by next Monday. Whew… fast! But, of course Blue Cross has to approve this. At this point, Christine and I thought it might be too fast, we have a lot going on next week with attorneys and Social Security and Podiatrist appointments..
Oh, I forgot to mention that piece. Michael has an ingrown toenail, on Monday he is getting that fixed – ouch ouch ouch please pray for him….
So, back to the story. Next week is busy, we decided to move the admission to Rusk – if Blue Cross approves it – to the following Monday, it would be the 26th. Pretty exciting stuff, great for Michael. Out goes the admission guy, in comes Dr. Farid, Michael’s physiologist. After asking us how things are going, he suggests that we check and be sure that the Baclofen pump is actually getting Baclofen to Michael’s spinal cord. The result of the test, nope it’s not. Christine starts firing away questions. A few minutes later we have an appointment, next Thursday and Friday to get his pump fixed. With that the hope is we will take him from University Hospital to Rusk where he’ll be admitted for a couple weeks – hopefully he’ll get more than that.
Sound confusing?
So, I would really appreciate your prayers!!!
For Michael’s ingrown toenail procedure
That the insurance company to approve all of this.
For safe travelling for everyone that will be going back and forth to Columbia
For timing in admission, release and admission with Rusk and University Hospital
For all of this to bring Michael good success
Most importantly that all of these things (Romans 8:28) would work according to God’s plan and Michael’s progress.