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Hydranencephaly Resources in caring for a Child with Hydranencephaly Physical Care of a Child with Hydranencephaly Difficult Times
Pt. 1: Taking Care of You Book: Caring for Your Child With Hydranencephaly
Printed Materials |
Orthopedic Surgery Personal Experiences Following are some of the experiences of our families with orthopedic surgery for their children.
From Lynne, mom to Nikki, age 6: Nikki has had numerous botox, and tenotomy procedures before having bilateral osteotomies at 3 years old. Her surgery went well with minimal blood loss. She was one of the first to NOT have casts after surgery only an abductor pillow. It made life very easy as we could still bathe her. She was hospitalized for 3 days and ten released home. 6 months later she had her blade plates removed and was released from the hospital the next day! What a trooper! Warning: This isn't an entirely positive story: From Barb, mom to Kayda (12/2/88-6/23/00): Kayda had 3 hip surgeries and our experience wasn't good. I believe that the cause of her first hip dislocating was that she didn't have enough physio supervision to make sure her stander worked. By the time she started having pain, it was too late, her hip was already dislocated. I had always thought that it was wonderful that she's avoided needing surgery up until that time. What I learned was that if we'd had her adductor muscles snipped previously her hip would never have dislocated. She had her 1st hip surgery in Sept. 1995, 3 months before her 7th birthday. The surgery itself went ok. It was a 5 hr. procedure. I can't remember all the procedures they did. I know it involved breaking her femur in 2 places, taking bone grafts and then totally rebuilding her hip joint and then holding it in place with pins and a plate. She also had bilateral adductor tenotomies (snipping the muscle at the top of her legs). She had a lot of pain afterwards and it took over a week for her to start being able to eat again. She did ok once at home. Getting her
casts off though, was a nightmare. I hadn't realized how painful it would be. As
soon as the casts were lifted off the spasticity still in her legs pulled her
legs up and out. It was horrible. She screamed with every bump on the way home;
Kayda never cired out in pain. I had been told that she would be in casts for
6-8 weeks and ten in a brace at night for 6-8 months. As her casts were kind of
mucky (we'd discovered an incision under her cast that hadn't healed) she was
sent home with a foam pillow to put in between her legs. I was told her brace
would be ready by the end of the week. On Friday (casts had come off on Mon.)
her physiotherapist came to start therapy. She asked me if I'd made arrangements
to have her wheelchair adapted. I said no, she didn't need them did she, as
after a few days she's just wear the brace at night. The physio looked at me and
said "no Barb, she wears that brace 24hrs a day for 3 to 6 months." I
never knew that. With lots of phone alls the therapist was able to get an apt
for us at the seating clinic in the city that afternoon and tracked down where
the driver was with her brace. We put the brace on and took off for the seatin Six weeks after her casts came off Kayda had her 7th birthday. In our area physio stops at the age of 7. In January Kayda saw the surgeon and the physio asked if she could come out of the brace a few hours each day. He agreed to 6-8 hrs. As she needed to be in her chair without her brace in order to eat orally I sent her brace to school so that she could be in it some of the time there. When the physio found this out she told me it was ok not to send it. But, because she didn't have thereapy any more, no one was there to make sure that Kayda spent at least a couple of hours out of her chair with her legs apart at school-that's the most stable poition for the hip. In early March (she'd had surgery in Sept.) she started having pain again. It took 2 weeks for the therapist to return my call and another 2 weeks before she could see Kayda at school. By that time, it was too late, her hip had come out again. So, she had to have another surgery. This one wasn't as involved as the first one. In order to make sure that the hip didn't come out again she was in casts for 3 1/2 months; all of a very long hot summer. In Sept. when her casts came off it was discovered that her right hip was now dislocated. The surgeon had hoped the adductor tenotomy he'd done would keep the right him in place but it didn't. This time, in addition to the Scottish Rite brace, she had it extended to include her AFO on her left leg so that she was bsically just in a removable cast. It wasn't a very ladylike position but it kept her hip where it belonged. The following February (almost 18 months after her 1st hip surgery) she had her right hip done. This time there were a lot of complications afterwards that almost took her life. That's when we discovered that she had Diabetes Insipidus. She was in the hospital for 3 weeks that time. When it was time for her casts to come off, she was admitted to hospital for physio as she had been when the casts from her 2nd surgery had come off. This allowed us to do physio in water and to move her without as much pain as she's had from the first surgery when the cast came off. In the end though, the surgery was worth it. She had no more pain and her hips remained in place. The surgeon had wanted to remove the pins and plates after about 2 years but both her social worker and I had doubts about the risks of surgery. Her orthopedic surgeon said that the reason he wanted the pins and plates out was that if she needed further hip surgery when she was in her 30s he'd have to dig for them. When we told him that children with her condition rarely survived beyond their teens he agreed not to do the surgery. It turned out to be the right decision for Kayda as she died just a year later. From Dee Dee, mom to Elizabeth, age 16: Elizabeth had her hips out of socket and the doctors said that she was just an unhappy baby. Well, we took her to Children's and found out they were out of socket. The Dr. also suggested doing Abductor Releases on her knee's and her Hand Dr. want to release her Tendon in her right thumb. All this was done at once and her recovery was great. A little Whiney after surgery but that was de to non-movement of her legs. She was in a Spica Cast for 6 weeks. Keeping her dry and clean was not easy. We had purchased a lot of Bed Pads and used 2 under her to keep her dry. She was propped a little so when she did potty, it didn't go up the back of the cast. As we all know, the rear is cut out for those nasty changes. LoL Elizabeth became real upset after 4 weeks in her cast so we called to see when the Orthopedic. - Ped.s doc would be in town. We were told in 3 days so I booked an appointment with him to have her seen. To his amazement, he really didn't expect to see Elizabeth for another 2 weeks but knew she was uncomfortable. We took her blanket off of her and he immediately yelled for a saw and help. Elizabeth had grown in her cast and that it was causing a little breathing problems. He didn't panic, I did but with in a few minutes, it was off and she was smiling. He did x-rays and everything worked out with the surgery. He said it is rare for a child to grow in a cast but if they have no brain then the body just moves on like it is controlled on it's own. He was very impressed with her and how she did real well. It has been 14 years since her surgery and I am now seeing an up swing in her hips so it's will be back to the Orthopedics for an up date. I have never met any one with a child like Elizabeth 14 years ago so the experience for us was scary, depressing and lonely but God was on our side to guide us through anything at that time. God is here for us all and if you put your trust in him everything will be ok. That is my little story.. |
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August 16, 2001- January 12, 2005 This website is funded in loving memory of Jason S. by his mother Kammy The information on this site is provided by families, caregivers, and professionals who are or have been caring for a child with Hydranencephaly. Please report any broken links or missing photos to angelbearmom@shaw.ca
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clinic. That trip was the worst I've ever had and hope to never have again.
Kayda screamed in pain the entire drive. I made a 45 minute drive in 20 minutes.
As soon as we got to the hospital I demanded that a dr see her and give her
something for the pain. We finally went home with an adapted wheelchair. The
brace was called a "Scottish Rite" brace. It had cuffs on her upper legs with a
bar in the middle. It allowed her to be in a sitting position with her legs
spread out. The picture is of another child wearing the brace.