Nov 16, 2010
So we came home on the 12th. It was an eager day before packing everything. The morning of, we did all our last minute stuff and helped another young man pack for his homecoming that same afternoon.
The ride home started with us going the wrong way in order to find a Walgreens that had Johnathans pain meds. Once we finally got there, they said they didn't have them. So the home ride started with getting back on track and calling Walgreens, Walmarts & CVS' between St Louis and home, so we could be sure John got his meds.
We got home about bed time and truly just dropped. I awoke the next morning more tired than norml and in complete pain. I had really only had 2 times that I had minor pain while gone, so this was a shock. I guess that even though I spent most of my time on my butt at John's bedside, sleeping each night, I truly never relaxed and slept...never even realized that 'til I got home. I knew my brain had turned to mush in the end, but felt that was from the rollercoaster of trying to rack it for too many days straight. Who knows. Today, I finally awoke feeling "normal" whatever that is.
So Johnathan is on 1ml oxycodone still for pain 3 times a day. I stepped that down to twice a day o Sunday. I feel then once a day then off by Friday. However, last night, Johanthan seemed stiff, a bit more in pain. Then this morning he was stiff when he awoke. So I gave his am dose and a feed and he settled into my arms. After abotu half hour to hour max, he awoke and was stiff in pain again. So I laid him down and he fell back asleep. Sleep is good; healing occurs during sleep. But waking stiff and in pain is not good, so ?????????????. Maybe I need to go back to 3 times a day. I can't give ibuprofen, for we reached our max 10 days on that while in hospital?????????? Thinkin we will just watch this day and maybe see what transpires.
For other issues, teachign other family memebrs how to do the brace and diaper changes is not happening. Everyone is afraid to try, so don't know how anyone can learn. Had to leave yesterday to deal with some serious issues with my mom and returned to learn no one had changed him and he was soaked. Last time I leave him for quite a while I guess.
We turned our pump up once right after gettign to Ranken. Then we saw Dr Anderson day ebfore we left and he state dwe should not be able to turn on his clonis, so turned it up again that same day. I can still turn on the clonus, so have an appointment on Thursday to turn it up one last time. We are better, but I think just a hair more. Although, we all know puberty causes change and baclofen can cause seizures, so with every increase, I am back on high alert for changes.
Ten there is the whoel bath issue. At Ranken, we got the bath brace, even though I felt a transfer was easier than the issue of properly placing the brace, we do what doc says, for we do not want to be the cause of any issues. We used the Leckey bath chair at ranken that is same as one we have at home, just smaller. I noticed Johanthans butt slid down in the one at Ranken, but I thought it was just due to it being too small and maybe the full tub could play a roll. So at home, our tub is smaller, so we used the chairs base and placed him at hip level. Not only did he still slide, but it was seriously scarey for me and cold for him. Bath time truly stinks. I need a bath overhaul and am thinkin we may need to change the thought to Johnathans one time wish from a handicap van to a bathroom that fits his needs???????????? But is that a wish for me and not him????? Later. Then ther eis the whole door issue too. Before,w ecarried Johnathan standing liek, but now we can't, especially if we wantt o keep the brace somewhat in place. Well the door is waaay to small, so told Mike we need to rip it out now and place a sheet. We are not about pleaseing those that may need to use our restroom while here, but about meet our families needs. We will start that this weekend, for it is an immediate danger of causing a drop or scraping of Johnathan.
So, ready for home, yes we were as far as Johnathan is now medically in better shape than before. As far as every other angle, no, we were not ready for all that hit us. Time; as always, time will tell.
Nov 26, 2010
Johnathan is so back to his old self; always wanting to go. We got the bathroom door and jam all cut out and have started on finding funds for a handicap accessible bathroom. We have found a few programs and are hoping to get at least 2 to help share this needed expense that si truly beyond our budget. We have GI appointment this week and next week we meet with the lady that knows all about bath chairs. I am still awaiting connection with wheelchair vendor so we can get that going.
I still haev a hard time with the brace. O & P are going to meet with me the same day as Dr Anderson, so that is great...22nd, so must struggle 'til then.
I do feel Johnathan is starting to lean to the right a bit; hoping it is brace issue, but not sure. Not really stressing over it, for he is off all pain meds and everything from surgery and does not seemt o be in pain. He is eating and drinking wonderfully. He still has that cough but it is a bit better.
Seems life is back to it's daily "what can the world give us today" that we gladly embrace and just do our best to get thru.....with God, I know I can.
Dec 13, 2010
Wow what a month it has been. Johnathan turned 12 yesterday and has gotten so big this last year. He weighs in at 83 pounds, almost 86 with his brace on. I still have issues with the fit, or placement, of the brace. Meeting with O&P on the 22nd, right before Anderson. We lean to the right still, a bit more than before we left the rehab hospital????? The 2 size C head supports do come in very handy for keeping the brace from rashign his chin and neck. Everyone laughs at his implant lookin supports, but hey, they work.
Turned out that our cough that started day after we got home is from reflux...yeah you heard me....who would have thought, even though doc was a bit off there, but cough got better with Zantac and Nexium around the clock. Stopped the zantac and cough returned. So Johnathan is now on Nexium, 40 mg 3 times a day. YEAH, crazy his reflux gets worse after surgery instead of better. And get this, saw Dr Kane, GI doc, and he says they are coming out with a new med based on facts behind baclofen pump increases helping reflux. It will be a reflux med minus the muscle relaxer part...crazy considering I was thinking our increase may be the cause for the reflux worsening, but who knows at this point.
Flu shot today...they have the h1n1 vaccine already in them too. Ain't takin no chances of getting that sick again.
Now the bathroom....well, got a couple bids around $30,000, yeah, again, you heard me. I about died. I know everyone gotta make a living, but WOW! Finally I have a bid a hair over $10,000; now I can find funding for that. I have completed 3 grant applications, as I hope each will help some and togetehr we can get Johnatahn back into the bathroom. We did gut the door, door frame a as much wall as we can. We can get him in, just haven't got the bath chair issue resolved yet..research for the hunt starts tomorrow. Met with Children's Mercy, but they are use to accomodating smaller than a 12 year old (found that crazy as I thought 18 or 21 was their end point???) 2 applications complete and sent off today, 3rd app waiting on a coordinator letter than will be hand delivered. I started with a list of about 15 and ended at 32 places for either research, info or funding. I even got a few other resources along the way...BONUS!!!
Make a Wish...the handicap accessible van has taken a back seat for now, as bathing is more important than traveling in style. We still have to get out almost daily, and this will have to be an instant focus after the bathroom is completed, since Johnathan is now 10 pounds heavier than surgery and momma ain't use to bench pressing that yet (not sure I ever will be ready, he almost 5 foot too). I am not a spring chicken any more.
Therapies are just gettign really started. we have PT and OT 2 hours a week in the home. We also still do one hour a week of manual therapy. I haven't foudn a speech and really haven't looked since we got home. I figure I will step up for that. Got positioning chair adjusted. Still have not been able to contact wheelchair vendor, so know we are stuck waiting until January seating clinic appointment...not happy about that at all.
Pray you all had an awesome Thanksgiving and that you have a joyous Christmas full of peace and cheer.
December 24, 2010
Merry Christmas to you all!
Had our check up with Dr Anderson on Wednesday. Our curve is now at 33 degrees, which he says it is normal to change a bit like that. Had them x-ray and look at his hips, as they are making popping noises. They saw no issues at all.
We discussed the pain Johnathan is in after therapies and the stiffness he has every morning. We are starting him on Neurontin. They say it use to be perscribed for seizures but now is mainly used for pain. It is a non-narcotic. I am still a bit puzzled how it can be a seizure med and not a narcotic, but we will try it. The pharmacist says it is one of the safest pain meds to be on. We'll have to let you know, for we just started it yesterday.
CRAZIEST THING....Johnathans x-rays showed his teeth, in the side view one.....shows about 4 teeth needing to come out now, for new one is knocking. I go thru each tooth yesterday morning checking for loose ones and 2 just pop right out. One big guy is a bit loose, but will need help. You can see molars comin also on x-ray. We need a dental surgery. CRAZY, but we need to schedule number 13; after the holidays.
Jan 6, 2011
Well, we have now lost 4 teeth just by playing with them. We saw the dentistTuesday morning and learned that we do have 2 more that will be coming out soon, but they do not feel we need surgery to remove them. The other 2 comign in are2nd year molars; I was thinkin wisdom teeth, so nothing needed there either. GREAT NEWS! We still have the terrible drooling, but Johnathan is eating most of his meals by mouth since those 1st 2 teeth popped out. The last 2 were big guys that had been capped, so they are causing some bleedign. They gave Johnathan a single dose of anti's and if bleedign don't stop by tomorrow, we are to call in for a 7 day anti dosage. They even got a cleaning in too.
We are still having pain after therapies and have stopped the neurotin and started tylenol with codeine, just yesterday. Can't really say much yet. Never saw any relief with the neurontin, still feel ibuprofen works best. I hate that we can't give himthe one thing that does bring relief. Most of our pain is in the pelvis area. You can tell, as movement here 1st thing in am, after an hour in chair, etc, he only jumps whne this area is moved. Thsu far, don't think the new ned is working with, but only a few doses given thus far so we will give it 'til Monday.
I did up Johnathans baclofen pump 10% also on Tuesday. Normally I only go 5%,but have not noticed any change with the last few and was hoping this would show something. Day one he knocked out about 6PM and was floppy by 2-3P. However, by the time he awoke the next day, you could not even tell we had done an increase. We had great arm movement after surgery, now we are back to what we had before surgery. The clonus is nothing like before, only occurs after therapies or when you truly pick him up and hold him. I am wondering if the oxycodone is what gave us functional arms, and if that is so, what else can work in the same manner without the narcotic??????
Love the Evolv sit/stand. Video to follow. Have not yet received the gel packs for the feet, but we are gettign up and doing great. Clonus comes about 15-20 minutes in thus far, but we hope to move up to an hour without any clonus.
Other than that, recheck February 2nd.
Jan 15, 2011
Still tryign to manage Johnathan pain. The neurontin showed no signs of anything. Then we tried tyenol with codeine; again I saw nothing. So I asked our pharmacist what he thought, since ibuprofen helps and none of these perscribed drugs were. He stated that was the clue; the neurontin is for nervers, the tylenol w/ codeine is for pain and ibuporfen is for swelling. So called Dr Rinaldi and he wanted to see for himself what I was talking about. He saw the severe pain when tryign to straighten Johnathan, lie down, etc. He also did some feelign around and was able to trigger pain & clonus in fidnign a tight muscle. So We are now trying celebrex with neurontin at a higher dose, but will work up to that higher dose, as pain could be from both. Also note, medicaid fought the celebrex for a 12 year old and stated due to spine surgery they would fill it this time, but no guarantee about next time. Seems there are no ibuprofen meds without the over the counter issues for children. Crazy in this drug happy world of pharmaceuticals. Back on track.....Dr Rinaldi pointed out how Johantahns muscles and everything are in new places, being streched in new ways and that alone will be painful and cause pain triggers. It is hard to work thru this puzzle of pain, for when we pick Johnathan up and place him on our lap, which causes movement, even slight turn in pelvic area, it causes pain. Some times just picking him straight up and giving him hugs also causes pain. But we can settle him out of this pain, most of the time. Seems if he has been sitting a bit, just waking up, some times, he will cry with these movements. Then there are the therapies. He is in paint he entire evening after PT and OT, so definately needs help for that. So, do we medicate all the time, as ther eis sporadic intense pain, or do we just medicate before therapies and when those painful times arrise???????
So, we started our 1st dose of celebrex and our restart of the neurontin on Thursday morning. Within an hour, if that long, Johnathan was a noodle; not brain wise but totallt body wise. Then we were to have a noon neurontin, as it is 3 times a day and celebrex is twice, but Johnathan was so not in pain that we did not give it. And, after talking with the docs and pharmacist, decided to just do the celebrex, as it was the new drug and see what its affects would be by themselves. We gave the evening dose at supper time as we had decided at docs. Johnathan fell asleep for abotu an hour and then was up 'til about 1:30A. Next morning calls went out to doc and pharmacist again to see what now. So we are now going to continue not giving the neurontin, for truly celebrax seems to take care of everythign a bit too much. And we are goign to cut the celebrex dose in half; and giove at bedtime, not supper time. This morning will be first AM at that dose, so haven't yet seen how it will work.
Also, while bathing Johanthan yesterday, I notice another string looking thing poking out from the very bottom of Johanthans spine incision. I grabbed the tweezers, ready to see another stitch, but it wasn't. Then there was ahole with a white center left on his spine. I did not squeez, but pushed from the side and the white thing came out like a zit core and left behind a hole that became blood filled, but did not bleed. We covered with anti-cream and a bandaid and sent pic to doc to see what to do. Nothing more than what we are doing since it was not pussy at all. Will include pic of hole and pic of how "relaxed" celebrex at 100 mg made Johanthan.
Nov 21, 2011
NO SURGERY NEEDED!!! I am so very happy to hear that.
It seems that the screws going into Johnathan's pelvis are moving around a bit. We need to stabilize his hips better, so he is getting some sort of leg extensions for his TLSO brace that will go all the way from the neck to the knee.
Also, we have not been using the brace when just sitting around at home. And when I out him in his positioning chair or his sit and stand, I have also not been using the brace, because it rides up. So we got that adjusted today too, and Johnathan will start wearing his brace with every waking moment until Dr Anderson says it is no longer needed.
Apparently this is common, so we are lucky to know what needs to be done to stop it from worsening. And the way O&P and Dr Anderson work togetehr is amazing. We went from doc to ortho, to ortho's other clinic and now O&P is driving our brace to the place they make 'em so we can have it back to go home tomorrow. They are truly amazing in their team work here.
Will get pics up when we get home. Thank you all for your prayers. And a special thanks to DJ for the jar he placed at the VFW and our church, First Church of God, for the monetary donations from both happened to come just a time when they were greatly needed. And beyond that, the prayers, and words of encouragement for my family have truly helped us thru this. Then, if it wasn't for the Ronald McDonald House, I don't know what we would do. THANK YOU ALL!!!
Feb 21, 2011
Notice the dark around both screws...that is th eare that the screws are moving back and forth in...DEFINATELY PAINFUL!!!
Feb 22, 2011
Got Johnathan's new brace. You can't really see the metal rods that go from the top brace to the botom, but they are along the sides. There is a lock to lock his legs in a straight position or a bent. This brace will force his pelvis to stay stable durign all movemet. It is a bit awkward and it will definately be hard to learn to transfer and hold him with his body staying in this position, rather than me being able to bend him into a comfortable position for me; but apparently, that is what is causing the issue to begin with, so we must find a way. He wore the brace the whole way home without issue. Time will tell.
MAKE-A-WISH is coming tomorrow!!!
Feb 25, 2011
Just an update on how things are going with the new brace...
Still can not use it for showering. You actually move him around more in the moving to get it off than you do to just carry him in without. However, we will be more alert to the positioning of his legs nd pelvis during these transfers.
Overall, I lvoe this brace and feel all kids with spinal fusions to the pelvis need to come home with this type of brace, so as to prevent the backwards steps we have taken and to only continue in a good healing direction. We now have to catch up to where we were after surgery. Yes, it is awkward and a bit stiffer than before, but truly it is easier in other ways. I can hold my son like I have for 12 years again; I could not do that in the other brace (just the top portion), for it would ride up, cut into his side, overall was uncomfortable for Johnathan. This is so muc easier. Also, transfers into his positioning chair were awkward before and are actualy a bit easier now, as it seems when I place him he goes in between the trunk supports much easier.
I am totally happy to have this new brace.
March 31, 2011
Johnathan is again in pain and his lower back is swollen/poking out, whatever this is. He seems to be in more pain than last time, so have increased his celebrex and neurontin. We have a recheck ppointment with Dr Anderson on Monday.
April 1, 2011
Johnathan is in terrible pain. The spot is hard as a rock and already twice the size of yesterday. I have added valium on top of the other increased meds. I pray it stays for Dr. A to see this time around, yet I pray it goes away so Johnathan does not have to suffer. Looks even worse than the pic, in person...
April 2, 2011
This morning his back is poking out twice as bad as yesterday. I think the hardware attached to the pelvis is sliding up and not all the way out, but almost. This is the worst pain Johnathan has been in since bone on bone from the hip dislocation. Just gotta continue to keep him drugged up and see what Dr A says Monday morning.
April 4, 2011
Johnathan did great with the ride. Gave hime some valium before we left jus to be sure. Had to keep windows cracked since no AC and KC hit 92 degrees...sweated the entire ride, and fought the wind.
Woke up early this morning, even though Johnathan was up before 2AM, as we have a 7AM appointment to redo the top of our brace...it has been riding up since day one and we really have no more that we can cut on.
However, Johnathans back is back to its original state. YES, here again, Dr A does not get to see what is up. I am however going to ask that he be sure it is not riding out a bit, for I know what I am feeling is not fluid build up, it is hard, it is the hardware?????
April 4, 2011
Brace appointment was over in 20 minutes...seems the screws for the side bars were placed an inch too high, therefor making the brace ride up...CRAZY, but loving it, for it may mean tht I can go home today. Not going to pack up until after we see Dr A at 11:30 though, just in case.
Johnathan is sound asleep and I am too coffeed out to join him...
April 4, 2011
Just got home...
Dr Anderson has ordered a CT scan, but there were no openings for one all week at St John's, so we will have it ordered and done here in KC and send him the scans on disk so he can get a clear shot of what is up. He said it has been 6 months now and things should be fused and we should be getting out of the brace by now. He bent and twisted Johnathan without a flinch, yet as he sits in Dads arms right now, he is again in pain????? Maybe he still had the last few days worth of meds in him this morning, for I have given nothing extra all day???? But the spot that pokes out is still gone????
Seems that one of the screws could be moving around a bit if it is not yet fused. Something was said about maybe having to remove it, but all will have to wait for the CT results.
April 8, 2011
So, CT is still scheduled for Monday morning. There were a few questions that arrose, so we are going to try and do it without sedation, yet be ready for sedation if need be. I do not know how long it will take to get the results back, but will eagerly await.
By Wednesday, Johnathan's got a bit poking out again. He is not needing any medication thus far. I asked Dr A if this is when we should be wearing the brace or leaving him sit. He stated that we are 6 months out and that we should no longer need the brace, plus the fact that it could cause pressur eon the spot. So no more brace.
We will now wait and see...
April 11, 2011
CT was this morning. We decided to do the scan without sedation. I was going to go ready to do either, but I forgot and gave Johnnathan breakfast feed. I brought along his bedtime med just in case we needed to help him relax (valium & melatonin).
When we got there, we were called right in. Johnathan had clonis type shaking from him checking everything out. This movement was enough to prevent the scan, so I did give him the bedtime meds. They worked perfectly for helping him relax and we were done in less than 5 minutes.
I asked if they saw anything, but they said they would send the report to the doctor, and that they had 24 hours to make the report up.
I guess we have to wait!!!
April 15, 2011
What a week!!! Called Dr A on Wednesday and learned they had not heard anythign from here yet. They called and asked the report be sent, but got no response. They were going to call again. Called Dr A back on Thursday and learned they still had not heard from anyone here, so I called Children's Mercy South and chewed some butt. They said they would call Dr A and fax the report instantly and then overnight the disk of films. Since it was in the after noon, they felt he would not get the disk until Monday.
So I called Dr A's office today and learned more than I thought, yet the final word won't come until Dr A sees the films himself.
Seems there is a fracture int he hardware and movement of the screws and hardware is evident.
That sounds even worse than I thought. I knew hardware was moving around, but broken, what does that mean. Where is it broken? What can I do to be sure I do not move it wrong?
This really stinks!!! Now I have to do my best to just keep Johnathan settled until Monday's report. Will it be just removing the pelvic hardware, or more? Then, how soon will surgery be? So many questions, concerns? Poor boy has been thru sooo much already. I even called Make-A-Wish nd told them to take the June dates off the table, for I know we will be recovering still and I do not want that happening while he is getting his chance of a lifetime trip.
April 20, 2011
Finally heard from Dr. Anderson this evening. Seems the report of the CT from Kansas City says there is a fracture in the hardware between L5 and the sacram, or the rod that connects to the pelvis from the spine. However, Dr. A is not convinced there is a fracture and does not seemt o see a reason to rush anythign right now. We have an appointment on May 13. We plan on doing x-rays at numerous different angles to see if there is really a break. We do not it is not fused. We do know there is some movement of the hardware. I guess now we wait.
May 13, 2011
We haven't had any real issues since the last one. It has poked out a few times, but went right back in without any extra medicaations.
Saw Dr. A this am. I have never been happier about being wrong. I so thought surgery was going to have to happen.
The x-rays show no breaks at all. They do show movement around the screws, and enough of a pocket area to where they could be coming back out a bit. They can not come all the way out. Our pelvis can not be fused if we are expected to have a life. If you stabilize everything, you will wind up with everything locking up and causing more problems in the long run. It isn't a regular issue. We know how to medicate him thru the rough times, which there has only been one of. The neurotin and celebrex work great at only 50 mg each dose. So, unless anythign major arrises, or if this is still an issue a year after surgery, and enough of an issue to where we want to remove the screws, then we can. No surgery for now, and maybe not even later.
AWESOME NEWS!!!
We'll check back in November or December.
Oct 31, 2011
Forgive me for not updating more often. Please note, I feel it is a good thing that there really has been nothing to note on.
Johnathan has done well overall. We did have to find a med combo to use after coming off the post-op meds and we are still on that neurontin and celebrex combo today. I do notice a difference if one, or the other, is not given.
We do plan on removing the hardware from the pelvic area in Jan or Feb 2012, as it does move around a lot and we feel we could get off these 2 meds once this pain issue is resolved. Seems the screws into the pelvic bone have been moving around so much, that they have made groves and even come back out of position some and then return to their place. A terrible site to see. But again, the meds are controling this pain issue compeltely.
HAPPY HALLOWEEN to you all
Blessings!
