Appt. with Dr. Nelson

Jeremy had his 6 week appt. post casts and the Dr. said he has wonderful looking hip. Jeremy is now able to do full activeties. yay!! We go back  March 8th.

My power point presentation for school



My storyboard

 I made a power point and storyboard presentation on perthes disease for school I thought I would share it. On the power point there is a video on the slide that says triple pelvic osteotomy the video should just start. I went more in detail on what Jeremy has gone through thus far. I hope everyone enjoys it!



My power point

and the casts are off.

 

Sorry it's been so long with an update we have been so busy. Jeremy had his casts removed Oct 10, when the casts were cut off Jeremy just could not stop peeling the dry skin off it was so funny. The first week was really hard for him he fell a lot. I felt so bad for him, he just cried said he didn't think he could do it but eventually he started walking better.I am just amazed at how well he is getting around. So far he is able to walk still has a slight limp but he is no longer in severe pain like he was before his surgery. We have Jeremy's 6 week  appt. with Dr. Nelson.  This year was Jeremy 1st Halloween without pain he had so much fun trick or treating.

And a New Day Will Dawn the surgery

So here I am, sitting in my son's hospital room, we are suppose to leave tomorrow for home. Jeremy had his surgery Tuesday 8/30/11 at 1:17 pm, and it has been a roller coaster since.

At check in

6:30 am: We all got up and got ready for the surgery Jeremy was able to have 7up until 6:25, he was excited about getting his leg fixed. We were running a little behind we are supposed to check-in at  8:25, we got here about 8:30 lol. We sat in the waiting room for about an hour, then we were called to the peds observation room.

Playing in the peds observation room

getting ready

Getting prepped for surgery: While we were in the peds observation room, the nurse got Jeremy ready for what was about to happen. Gosh we were in this area of the hospital for about 2 hours, then Dr. Nelson  came out talked with us and wrote a big YES on Jeremy's left hip.We met with the pain management team and they told us everything that was going to happen. Jeremy would be given an epidural for his pain, we were told that this is the best way to control pain for hip surgery. At 12:30 pm they rolled Jeremy back for surgery.

The surgery: I got a text from them surgery started at 1:17 pm Jeremy had  3 procedures done, triple pelvic osteotomy, tenotomy, and core decompression. Dr. Nelson came out and spoke with us at 3:00 and told us the surgery went wonderful and he only lost a little bit of blood, we could go back and see Jeremy when he wakes up.

in recovery room

The recovery room:   I tell you, my heart dropped when I saw him. Jeremy had just woken up screaming for both Ian and I. He was in so much pain. He was able to barely get out that he hates doing the splits and why is this happening to him. Tears where in my eyes, but I had to be Strong for him and tell him he was going to be OK.   I didn't like the recovery nurse at all, talk about a mean cold, nurse. I told her to do something for him he was hurting, she got nasty with me told me I could leave. I bit my tongue so I could stay with him. They were having trouble keeping his blood pressure up.They turned his epidural off to try and get his B/P back up.The nurse walked away to get something and Jeremy had a seizure, Ian and I told her but she told us we didn't know what we were talking about. Jeremy started to be in severe pain by this time and was screaming and arching his back and this nurse is just sitting there staring at him asking him where is the pain. So from about 4pm until 9pm we were stuck with this mean nurse and  Jeremy was miserable.

in his room

Jeremy's hospital room: At 9pm they finally decided Jeremy was stable enough  to go to his room. We get here and the nurses are so nice. Jeremy was very quiet for the majority of the night. Then next day he was in a lot of pain throwing up nonstop most of the day.

physical therapy

Physical therapy:   Dr. Nelson ordered physical therapy the very next day. Told us Jeremy could be discharged on the 1st. I was shocked that he said that. Jeremy wasn't holding anything down was in severe pain. The physical therapist came she is very nice, very patient., she told us the sooner we get Jeremy moving the quicker his recovery is. So we moved from the bed to the wheelchair and showed us how to get him to sit up. Jeremy started having high fevers. Later that night he got so hot that they had to do the cooling measures.

3 days later we were able to get him out of his room down to the cafeteria

last night there he is finally back to being Jeremy

 September 1st: It has been a nightmare today. Jeremy has been screaming all day about being in pain. We talked with the nurse and the child life specialist and we figured out Jeremy was having extreme anxiety about what is happening to him. He thinks his hip is dead, and that he will never walk again and the casts will be on forever. None of the pain relievers are working because he has so much anxiety. They ordered Valium for his anxiety and for his muscle spams he was having, OMG what a difference in him. He is now watching TV without crying, he is taking his medicine without a fight. We got him to learn how to move into the commode he even went pee. We even got him in his wheelchair and went for a walk down to the cafeteria, he tried to eat but nothing tastes good to him. Ian and I got him back into his bed just the 2 of us. Tomorrow we get to go home. We are all happy to go home. I know we are in for a crazy year. I hope Jeremy is able to handle what is about to come.

11 days untill surgery

I can't believe Jeremy's surgery day is getting so close. I still feel we are not ready lol, but we are. Jeremy has been doing really good in his physical therapy and pool therapy. I have noticed a real improvement in his walking and over all he seems happier. Here are some new pics of Jeremy.

Physical therapy

Jeremy hiked down to the narrows with no help his 1st trip down there. He only needed help at the very end of the hike it's a huge hill.

 Pool therapy Jeremy started playing with the pool wieghts whilst waiting for his appt. time.

pool therapy today

Jeremy really liked the pool therapy today. The physical therapist had him do a ton of leg exercises and Jeremy really enjoyed himself. He goes back Thursday for more pool time. Here are some of his pics from the 1st  pool therapy session.

when we first checked in

Jeremy got in the pool 1st time

starting

mommy look at me

physical therapy

Jeremy's 1st physical therapy appt. went well. They dont have alot of perthes patient there so the physical therapist said he was going to research more about the disease so he can make a good program for Jeremy. So his next appt is in the pool yea!
On our way down the hill we got hit. A man backed into me I had to honk my horn  like a ton of times to get him to stop backing up on me. So now my car is messed up, what else can go wrong? I fell like the world is coming undone all around me.

July 27th

Jeremy has his 1st physical therapy appt. tomorrow. I hope everything goes well. We received our confirmation paperwork from Dr. Nelson's office about Jeremy's surgery. Jeremy has a per op appt. Aug 25th, I am not sure what we will do that day. On Aug. 30th Jeremy will have his surgery they will be performing 3 procedures, left adductor tenotomy, left  triple pelvic osteotomy and femur core decompression. I was told the operation should only be 2 hours. Ian and I are going to see if we can stay at the Ronald McDonald house for the 3 days.
I am really scared I try not to show this in front of Jeremy. I have a real sadness today,  I wanted to get Jeremy's bus pass for school today but I think I should wait until it's closer to his operation. I know he will not be able to go to school for awhile. I was thinking last night whilst I was tossing and turning in bed, I want to take Jeremy to Disneyland again before his surgery, I think it well make us all feel happy maybe fill our hearts with more hope. I know my son is in good hands, I researched Dr. Nelson  and he has done a lot of amazing things, he is a really good surgeon. But I am just so nervous.

Jeremy's latest x-rays

.Here is Jeremy's latest x-rays taken June 24th 2011. Youcan see the whole head involvement and and the dislocation. I am wondering if they will take more x-rays before his per op appt

July 19, 2011

I am waiting on our physical therapy referral. OK here is the story. When we had our first appt. at Loma Linda  with Dr. Nelson we met with his PA on June 24th. She had prescribed physical therapy for Jeremy she wanted him to start right away. Well our not so wonderful primary care physician has taken his time to fax the referral to our insurance. Our insurance company had to call the Dr.'s office July 11th to get them to fax in our referral. So finally after waiting from June 26th till July 11th the not so wonderful Dr.'s office faxed it in for a physical therapy place that does not have pool therapy, does not have the right equipment for a perthes patient.  So now I am waiting for our insurance company to redirect our referral to a place that I want Jeremy to go. I am not having such  a good day today.
I filed a complaint with our insurance company about our not so wonderful primary care provider. I am hoping our problems with this Dr.'s office is over.

Appt. with Dr. Nelson

Today we had our first appt. with Dr. Nelson, Jeremy was really scared he is afraid he will never walk again. I told him Dr. Nelson is a very good Dr. who will make his leg pain go away. Jeremy smiled. We got up today at 6 am no one slept good at all. Our appt. was at 8am we were only waiting for about 4 min before we meet Dr. Nelson. He answered all our questions examined Jeremy.
 He told us Jeremy is pretty far along in the disease, he needs surgery very soon. We have 2 surgeries to choose from both have very good results.
1) triple pelvic osteotomy, 6 weeks in a cast no real movement then, When the cast is removed physical therapy is resumed.

2) external fixator, would be on 4-6 months with lots of physical therapy.

Ian and I know he needs the surgery Dr. Nelson told us to research both surgeries we are scheduled for surgery on or about Aug 30. Jeremy will be in the hospital for 3 day given everything goes as scheduled.
I feel good about this we are finally attacking this disease.  I just want my son to be able to run, walk, jump and play without pain.

update:  we decided to go ahead with the triple pelvic osteotomy and if need it use the ex fix as a back up.