April 2011
We are doing 200mg of ibuprofen in the morning and before bed to keep pain and inflamation under control. In May we will only do ibuprofen as needed. This will probably flucuate.- Physical therapy exercises at home to increase flexibility and range of motion.
- X-Rays every 3 months.
- Swiming was strongly encouraged!
That's it for now, the plan is ever changing.
May 19, 2011 Follow Up
Braiden had a range of motion follow up appointment today. Doctor says range of motion is looking better, which mean hip irritability is down. He gave the OK to let Braiden walk 50% and wheel 50% of the time. I will not be doing that for the following reasons:
- Doctor said that we would be using Ibuprofen more.
- On the days we had trouble keeping Braiden off his leg, he was pretty sore at the end of the day. I would be back to giving him ibuprofen everyday.
- As many of you may know we are not big fans of medicating for convenience.
- Braiden likes to push his limits, he will almost always do more than he should.
Another set of x-rays in 6 weeks.
June 23, 2011 Appointment
Appointment today went good. The Doctor is still happy with Braiden's range of motion. His left side looks just fine in the X-Ray, so the pain is probably from over compensating for his right leg. Said he could continue to walk around the house and outside playing. Just no jumping, running, etc. And, use the wheelchair when we'll be doing anything with alot of walking or if he has been limping considerably or is in any pain. With the Fragmentation Stage (the stage of the disease he is in) it is primarily about pain control,
the body will still do what it is supposed to do whether he is walking around or not. So, as long as he is not in pain he can walk. X-Rays have been posted on the X-Ray page. Next appointment is in September.
September 15, 2011 Appointment
Appointment today went pretty good. Nothing unexpected in the X-Ray. The head of the femur is being reabsorbed as expected....what a very slow process. The Doctor is concerned about how tight the muscle in his inner thigh is, if it remains this tight it could affect the shape and placement of the Femur Head when it starts growing back. We have to do a frog like stretch for 5 minutes a day...that's the goal anyways. If this muscle doesn't relax and loosen up it could mean surgery or a botox injection...we don't want this. The Doctor also explained that as the head of the Femur gets smaller there is potential for it to slip out of socket. If this happens he would need pins to hold it in place. The last 2 months have been great for Braiden as far as pain goes....he's pretty much been fine, has only needed ibuprofen a few times. As, it gets cold and damp outside irritation in his hip will likely increase :o( X-Rays to come in the mail, will post when they are on the blog.
December 22,2011 Appointment
This appointment went just like the last few. Range of motion is pretty good, Dr. is happy with that. Nothing new to report.
March 22, 2012 Appointment
Well, the outcome of this appointment wasn't necessarily a surprise, but, unexpected none the less. Some changes occurred rapidly over the last few months. And, by rapidly I mean in comparison to previous progression.....which was remarkably slow. Since the December visit the head of the femur has flattened and widened to the point of standing out past the hip socket and there is more involvement with the growth plate and head of the femur bone than what is usual for his age. Braiden had been having pain everyday over the last month and a half and using his wheelchair quite a bit. The Doctor said that the recent changes in his hip are why the pain has increased. With LCPD there is a "grading" scale, "A" being not too bad, "B" moderately bad and "C" being bad........Braiden is a "C" on this scale. This is not usually the case with children Braidens age, Braidens hip is acting like an older kids. They usually operate when these things are present in the older kiddos, but the Doctor wanted more information before making a decision. He wanted to do an arthrogram, where contrast iodine is injected into the hip joint while using a flouroscope to better see what was going on with the joint. Arthrogram tomorrow bright and early!
March 23, 2012 Arthrogram appointment
Get to the hospital at 6:30am, the procedure is at 8:00am. In the course of this hour and half I was asked the same medical history questions by everyone that was involved with Braiden that morning, I think there were about 5 or 6 people. It was a really good experience, everyone was SUPER nice and BraidenThe options: Option A- Surgery now, which involves cutting and repositioning the bone and inhibiting a portion of the growth plate. This will help the head of the femur grow back more round and lessen the effects of arthritis later on in life (arthritis is pretty much inevitable). Braiden will spend a few days in the hospital, then 4 weeks in casts on both legs with a bar between them (the Dr. only does this with the exceptionally active kiddos, which Braiden certainly is), and a walker after that (not sure how long, I think it depends on the rate of healing). Option B- Wait. Let the femur grow, but will need surgery to reshape the head of the femur. So, surgery is inevitable. We chose Option A, we feel that helping the head of the femur grow back round would give him better quality of life in the long run. It will be a challenging couple of months, but it will be worth the outcome.
March 29, 2012 The Surgery
Braiden was amazing! He was so brave, the anesthesiologist and nurses said they wished all kids were like him. 7:30am - 11:30am, quite possibly the longest 4 hours of my life. Braiden tolerated surgery quite well. He had very little bleeding and recovered well from the anesthesia. Aside from the pain he was doing very well. The goal is to leave Saturday, March 31st. We needed to accomplish 3 things to be able to go home 1. take pain meds by mouth, 2. Successfully transfer from the bed into his wheelchair and back into bed, 3. go potty. Braiden starting taking his pain meds by mouth Friday no problem. However, I was having some serious doubts about moving him out of the bed. As of Friday, I was not comfortable about taking him home on Saturday. Friday night Braiden was tired of having the catheter in and wanted it out. So, I told the nurse to remove it, she asked me several times if I was sure.....yes, I am positive, we can handle it. So, Braiden started using the little urinal bottle....a little messy, but, I can deal. Saturday morning Braiden wanted the IV out. He had been taking his pain meds by mouth for the last day, so no point in keeping it. Told the nurse to remove the IV, again asked several times if I was sure....yep, completely. So, goals we need to meet today, getting him in and out of the wheelchair and he needs to have a bowel movement. His nurse today kinda stinks :o( I had to hunt her down for everything, usually didn't find her and just got another nurse to help (all other nurses were great!). Not long after lunch I decide it is time to get Braiden into his wheelchair. We both had to overcome some fear to accomplish this. I was having some serious anxiety over hurting him while moving him, but our want to go home was strong at this point. So, we (Braiden and me that is, his nurse nowhere to be found...surprise) got Braiden into his wheelchair....whew, we both sigh in relief...not so bad. Braiden and I go to the playroom and he shoots a few baskets in the mini basketball hoop. One more goal to go...BM. The nurse brings in a little camode and I start having Braiden use that instead of the little urinal...much less messy. Eventually needed to give him a suppository to help him along. 30 minutes later...wahoo....goal #3 has been accomplished, let's go home. Getting discharged takes a while, but we get home at 8:00pm. Both of us exhausted and happy to be home. Now Braiden can get a full night sleep.
January 17, 2013
So obviously we've had more appointments between the surgery and now....sorry about, life has thrown some crazy curveballs over the last year. I will try to summarize them now. Braiden had physical therapy for several months after surgery he is pretty much back up and running as per usual with the exception of some "in-toeing". He is having trouble with internal rotation which makes it difficult for him to keep his foot straight ahead.....it turns in especially if he is running or tired. Will the at get better? I really don't know I hope so. The bone cut has healed well, no concerns there. We will be getting the plate and screws out and having another fluoroscope to see how the joint is articulating (how well it fits/moves together..I think) sometime in February. It will only be a day surgery, so he'll go home that same day. The head of the femur is now GONE, completely. I don't have the X-Ray's to post yet....I know, I know I'm way behind on those.
