Nov 15, 2011
Over the last year we have gotten use to seeing Johnathan's pelvic area "pokin out" from the hardware in the pelvic area moving around. The screws have shadowing around them on the x-rays, which shows they are moving. From the minute we got home and got off the surgery hardcore meds, we have had to medicaic pain. I found 50 mg of gabapentin 3 times a day and 50 mg celebrex twice a day have been enough. The last few mnonths though, changes have occured and there has been an occasion to give an extra 50 mg of gabapentin for "extra" pain.
We are 12 and hittign puberty. No major issues, just biting lip during sleep, whcih they say could be from getting those 12 yr molars. we have started tizanadene at night and stopped the valium and it is working. I guess it is a med given for kids that grind their teeth bad at night. We have also upped his baclofen pump a few times, as he is growing and when the clonus gets worse or it gets hard to change clothes, we up it. However, I think only twice in between the 6 month refills, so maybe just 4 times all year????
Thsi morning, however, Johnathans back was worse that it had ever been. It alsmost looked liek the screws in the pelvis were sideways. We did up his pump exactly 7 days ago 3% in the day dose. The 1st is a pick of him rolled to side while in recliner. The 2nd pic is Mike holding him straight up and down.
Nov 17, 2011
Tuesday, Johnathan's back was bad, but his demeanor was as if I had given him extra meds, BUT I DIDN'T. That lack of pain is why I called docs but did not run in to ER. Wednesday it was poked out a bit less, but no pain and not lethargic. Thursday am it was still poked out and Johnathan was in pain, so I decided rather than go to radiology and do the orders I requested earlier and have to await results, I went to ER, stated what I wanted and gave them Dr Andersons phone number to consult with. They gave me a bit of a hard time, but I gave my own meds when I felt they were needed, they got x-rays Dr Anderson wanted and I left with a disk and awaiting to hear fromDr Anderson. Friday, Johnathan was lethargic, again, without extra meds, so it is too sporadic to jump at pump tubing malfuncation yet, but I am now charting days of tone changes.
When I heard that the x-rays were unchanged from September, I was a bit puzzled, as th ex-rays I requested in September were to look at the "poking out" of his upper back, not hardware issues. I had x-rays back in March for the hardware and the result said possible fracture. Although, Dr Anderson was not convinced. So I have now pulled out all my disks and found a few things of concern, below is those x-rays and my concerns quoted above each set.
I have an appointment with Dr Anderson on Novemebr 30th. He said we will access Johnathan's baclofen pump port at that time and discuss surgery dates then and what we will truly need to do. Johnathan was to have a tendon release of arms and legs in Jan or Feb, so we could have our holidays at home this year, however, I feel either his 13th birthday or Christmas will be in the hospital.
COMPLETE SPINE VIEWS - first is before surgery vs Sept 2011, 2nd is Sept 2011 & 3rd is Nov 2011
PLACEMENT OF THE BACLOFEN PUMP TUBING AT THE NECK APPEARS SLIGHTLY MOVED, or could it be the neck slightly repositioned- my main concern now would be having to go thru another hole in the tubing and all those issues... The 1st is Sept 2011 and the 2nd is Nov 2011.
THE DISTANCE BETWEEN THE BACLOFEN PUMP AND THE SCREWS - the 1st pick is the spine before the fusion to the pump, the 2nd is March 2011, the 3rd is Sept 2011, and the 3rd is Nov 2011
SHADOWING AROUND SCREWS IN PELVIC AREA SHOWS HOW MUCH THEY HAVE BEEN MOVING AND THE "POCKETS" THEY HAVE MADE - the first is in Sept 2011 & the 2nd is Nov 2011
ORIGINAL HARDWARE PLACEMENT - 1st March 2011, then Sept 2011 & lastly Nov 2011
Now these last pics show a clearer view of the baclofen pump tubing from the pump to the port and up the spine. The 1st is Sept 2011 & the 2nd is Nov 2011. You can clearly see the potential for the screws to rub on the tubing, especially when you relook at the upper pics of the spine vs closeness to the pump (which looks to show the ability for it to even hit the pump on occasion?????
After all this, I am no longer convinced of a break, but still question how things are moving in and out so much. I do however totally question the risk of tubing malfunction due to the movement of the screws on the tubing, but don't see how it could be avoided either???????
I guess this is why Dr Anderson is the professional. Now I just pray we have no more complications between now and our visit on the 30th and the surgery date we set at that time.
