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.
He's a little soldier! Keep your heads up and I'll keep praying for the best for Jeremy and you guys! Get stronger and healthier Jeremy!
ReplyDelete-Red Head John
How old was Jeremy when he was first diagnosed? Was it a sudden onset? ...or did the symptoms progress over time? I am doing a Masters Thesis on Legg Calves Perthes. Thank you so much for your time.... and for your blog.
ReplyDeletev/r,
Martin
Thank you for the comment. Jeremy was 6 1/2 when diagnosed May 2011 I started to notice a limp Oct. 2010. I didnt think much about it. I thought he was just walking like that because he thought it was funny. I finally asked him and he told me it was very painful to walk normal. So I suppose it was a gradual onset. I wish there was more information about this disease.
DeleteThank you so much for the info...same here, I wish there was a lot more research/studies on this disease....or even preventative/screening measures....so to engage with early intervention/treatment.
DeleteHi! How old was Jeremy when he was first diagnosed? Was it a sudden onset of symptoms or gradual? I am doing a Master Thesis regarding tis disorder...really appreciate it for any info...and thanks for the blog....very educational.
ReplyDeleteHI again, this is Martin. I am still in PA school :) and still working on my thesis....had my instructors take their first look....they they have so many questions and was very interested.... as well as I :) Just curious....What happened before and after the surgery? Was he non-weightbearing for how long? Was he in pain for quite some time? Would he be able to walk (crutches/wheelchair) before the surgery/after, What are the many hard things Jeremy had to endure, as well as the family during this time. How was he affected and the family? I am sorry for all these questions.....I making a point how much this disease can be life changing....and also getting some concrete evidence regarding a better tx prognosis...surgery vs non. Thank you for any input yoiu can provide....unfortunately I can only site on my paper....whats on your website and the info you have provided for me. Thank you so much ma'am.
ReplyDeleteI for got to tell you my email....it is martin.vicente@live.com...if it would be better for you to reply there. Thanks again.
ReplyDeletev/r,
Martin
I am so sorry it has taken me so long to respond. I will send you an email very soon.
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