Johnathan is currently having numerous issues medically.

Since his new baclofen pump was installed, Johnathan showed a overall 70 degree curve of scoliosis. Since he outgrew his wheelchair and something is going to have to be done about his spine, I ordered a positioning chair thru medicaid instead of another wheelchair; you only get 1 every 5 years, so don't want to blow that until we know what the spine outcome will be. Well, that was back in December 2008. Last month Johnathan had new spine x-rays done; his curve is now 80 degrees overall. We have no chair, as medicaid has denied it 4 times, so have nothing but a recliner to kick back in. Early this week, after restarting my research for a positioning chair and documenting every bit of it (about 30 pages worth of details) being sent medicaids way, kindly blaming their ignorance for my sons scoliosis getting worse, we finally got approved for the chair.

As far as for the scoliosis, docs want to fuse his spine. I thought that meant straighten and fuse, but have learned that ain't necessarilty the case..they can't straighten, but straighten as mush as they can and fuse where he is now....I can only assume that this means fuse at the 62 degree laying down curve, not being able to go 0-10 degrees and fuse. I do not believe I agree with this and have researched other options.

I found a new technique called sublexation..thanks to mothers on one of the wonderful support groups having already found it and had great results. We started in mid-May. It is chiropractic and then we are placed in a vibrating chair, in proper alignment, thus relaxing the spine in the newly adjusted position. Basically, after an adjustment your spine is angry and wants to go back out into its comfort zone, even though it is wrong. By adjusting and then relaxing it into new place, you can "teach" th espine to straighten. A years time is what this clinic says it will take. I stated don't make promises you can't keep, but she is very confident and determined (and a christian on top of it). I got nothing else, this is non-evasive and well worth the try. I pay out of pocket, but know god will help us pay. I have noticed that he sits differently in his chair; getting a curve at top of neck that wasn't there, or noticeable, before. Time will tell.

 

If all that wasn't enough...Johnathan has new teeth coming in. Since he doesn't chew, his old teeth need to be pulled to make room. He will have surgery on August 27th to pull 4 teeth and fix a cavity. OUCH!!!!!

 

Then still, he grew about 10 inches and lost 4 pounds; NOT GOOD.  Johnathan had a head cold and need to be steamed for relief, so I climbed in the tub with him. When I looked down over my son, I cried...he was so long and so very skinny. I do not know how I missed it. One never truly looks at their childs nude body; you're either bathing, changing, dressing, something.  Needless to say, I took a pic and sent it to his rehab doc, who agreed that he had gotten too thin. The next day I learned Johnathan was 48 pounds and 52 inches long (off the chart). We made a quick appointment with nutrition and surgery clinic for placement of a feeding tube. Surgery is August 26th...yes 2 surgeries in 24 hours. After a week on a new diet, wereturned for another wieght. Johnathan had lost more wieght, so a nasal feeding tube was placed on Tuesday. I was sick. I had to place the tube. Hard, shaky, but done. Stressed for about a day over everything with it. By day 2 I have my routine, but Johnathan isn't eating anything food wise now, his reflux has worsened. THIS TRULY STINKS!  So now we are seeing GI on Wednesday to see if yet another procedure needs to be added to our hospital stay - a fundlication (?)...something to stop reflux.

 

So, we sit today with a new wheelchair that Coalition helped us part together on Friday, a belly full of kid boost  and reflux that has drool everywhere, awaiting more doc visits and 2, if not 3 surgeries in the next 2 weeks. MEDICAL SUCKS! (forgive me)

 

August 25, 2009

So tomorrow is suppose to be the fundlplication and placement of a minni-Mikey feeding tube. But since when I met with the doctor and told him to be sure we get scheduled by 10A, so as to not wait beyond 12P for surgery, the doctor ap[parently wasn't listening and scheduled us as his last patient of the day, surgery is cancelled. And since I called same day surgery to be sure they too were aware we were coming and that our mentality age and age in years are waaay different so our schedule time is to be early, I thought I was set. But then surgery nurse calls to tell me we have to reshcedule and that we were pulled from the schedule since they could not accomodate my early time. I asked who felt they had the right to cancel our surgery without 1st consulting with me and she blammed same day surgery. She stumbled over a few of her words in our convo, so I felt the need to verify her story and learned she cancelled our surgery and was not willing to admit it. Therefor, liar, not willing to take responisbility for her choices...NO ONE THAT I WILL TRUST WITH MY SONS CARE. So doctor and nurse are fired. My sons suffers for their ignorance. And I await a clinic appointment to meet a new doc and reschedule the much needed surgeries. RIDICULOUS! but that is what I have learned to be the norm for Children's Mercy and my special needs child.

 

Luckily dentalclinic cares for their children, scheduled our surgery early and we will continue Thursday as planned. I truly am happy to not be doing 3 procedures in 24 hours, but am not happy that AGAIN  Johnatahn suffers as I must hold people accountable for their actions. I refuse to place my son in the care of peeople that lie and show disregard for his well being.