Surgery may have to be postponed.

Hi Ya'll,
Matthew has had 5 seizures since we returned home from the baclofen trial on Friday.  This did not surprise me at all.  The stress he was under with all the poking and prodding, the change in seizure med times, dosages, etc just got the best of him.  I feel like it was partly my fault but the way it happened was so weird and quick...

I'll be calling the surgeons office to tell them we need to re-schedule the surgery. If Matthew has any more seizures.  The last one was around 2AM.  He was out of it most of the day.

Before we left for the test on Wednesday, I had given Matthew some milk of mag just to clean him out because I knew he would be doing a lot of laying around during the hospital stay.  He had a good bowel movement on Thursday.  When we got home on friday, his stool was like rocks.  The only other time they have been like that is when he was put on the robinul . Robinul is for drooling and if you take too much it causes severe constipation.  We ended up reducing the dosage and have increased water. That was 5 years ago.  Matthew was on an IV most of the time and he is Never constipated when he's on IV.  He gets plenty of water and also had given him grape juice.  What I'm getting at it that after all the medicine mix ups, I believe he was given too much Robinul.  After I thought about it, I remembered that I had to keep putting chap stick on Matthew in the hospital because his lips were so dry. 

I am going to re-write my "So Let Me Tell Ya About My Day" post in a more professional style and take it with me for the Nurse manager and Dr. Veda.  I am really nervous about taking him back without having these issues resolved.

Matthew is doing okay now.  He's listening to his MP3 Player.

As for me, I have got to get registered for college algebra so I can start Respiratory Therapy school , or nursing school this fall.  I have to go to CMMC for 8 hours to follow a therapist and that will complete the requirements to get into RT school . If I see I don't like RT, I'll do nursing.  That will mean I'll have to take the ACT over again for the 2nd time.  I raised my math subscore from 12 to 18 but lowered my overall score from 18 to 17. You have to have an overall score of 18 and a 18 subscore in Math!!  I am going to have to take some ACT preparation classes this.  That is a hard test. Definitely not the same test I took in 1994.

Meanwhile I have started eating like a pig again but trying to stop. It's definitely stress related. My hair has started to fall out again, way more than the usual.  Every time Matthew goes in the hospital, my hair does that.

I've had a few other personal problems that I can't even talk about  because anything and everything I say could be taken the wrong way.  Sometimes I wish I had a nasty foul mouth and spoke my mind and didn't care what others thought or said about me but I do care and I don't have a foul mouth so that's out of the question.. That doesn't mean I didn't "think" it though.  It just hurts.
 I wish there was SOME way that his surgery could be video taped.  I saw one guy on
Youtube that had his video taped.  Like this one. (Warning , it's graphic)

One major concern about the surgery is I worry that they will try to lay Matthew's legs straight out flat in front of him.  My husband, John, says well he'll have the pump so he can do that.. well NO dear. Matthew will be "getting" the pump.  His legs cannot be pushed down flat while he's getting the pump or after.  Yes, they will be looser but they are far from him being able to lay them flat and straight.  Remember that he has some atrophy from keeping his legs pulled up for over a year.  Atrophy means the tendons, ligaments, and muscles have drawn up, tightened up.  If you just push them flat down, you will end up injuring him because it will tear or sprain whatever muscle has atrophy.  So Im wondering how they will do it without pulling his legs down.  Does anyone out there know how that works? Doesn't matter is he is knocked out, those legs are not going down. The ligaments are not able to do that anymore.Understand?  So I have decided to get a big black permanent marker and write "DO NOT PUSH MY LEGS DOWN FLAT!!!!".


I will be talking to the surgeon, surgical nurse, .. all the folks that will be in there with him but I'm still using the marker.

As he gets older, the surgeries get scarier. Reason is because he is highly prone to getting pneumonia if I don't keep him moving, doing back pats... He is 62 lbs now and that is not as easy as it used to be. He doesn't do much more than just lay there now days.  He used to move his legs but he can't do that right now. Hopefully he'll be able to move them and I can get him back to the pool.  I just don't see how much longer he can lay around from bed to chair to swing and that's it.  That's why we have to get these legs fixed and THAT'S WHY MS MEDICAID NEEDS TO FUND THE MEDICAID WAIVER PROGRAM WITH ENOUGH FUNDS TO SEND SOME HELP OR I HAVE SERIOUSLY GOT TO MOVE TO ANOTHER STATE THAT IS SENDING OUT HELP.  I AM NOT GOING TO LIVE IN MS AND JUST KEEP WAITING FOR HELP, MEANWHILE HE'S LAYING AROUND DYING BECAUSE I DON'T HAVE ANY HELP AND THE PEOPLE THAT DO HELP DON'T UNDERSTAND THAT LAYING AROUND WILL EVENTUALLY LEAD TO DEATH.  All I want if for someone other than myself to give massages, put him in swing, read too, play with , move his legs, stretch him... I'll still do it, but I can't do enough.  He needs a lot more movement than I can physically give him..  Too bad he doesn't have any relatives down here that will come by a few minutes during the week to do that.  When Matthew gets 70lbs, I will be in another state one way or the other if we don't have some help.  If anyone reading this has a home attendant or nurse, please let me know what state you are in and how long it took to get help.  My aunt has called and said she will come over and help me move and change Matthew when we get home so I don't have to hurt him .. she is 64 and has a 100 lb handicapped child in a wheelchair and takes care of a mentally handicapped sister.  She is the only one that has called and insists on helping. She has a nurse for her daughter she got 10 years ago. She is my husbands aunt.  Sad that most of his relatives have not bothered to call or check to find out about him.  Sorry, I had a lot on my mind.