At one point she was diagnosed with stage 3 esophageal ulcer. This maybe have explained her reason for not wanting to eat. The ulcer was a result of sever reflux. she was put on a bout of antibiotics and the ulcer was gone after about 3 weeks, but continues to take medications for reflux.
At this point her care was much more than we could do at home. She was not sleeping, she had a very sporadic sleep pattern, awake for 48 hours asleep for 72 hours. There was a need for 24-7 awake care. She had just a hospital bed at that time, that had proved to not be enough. We needed a Enclosed bed system so she could not wriggle herself out of her bed (not as though she was trying to get out, she would just get herself sideways in her bed and come right out from under the bed rails!) We then had bought a Vail bed.
We made the hard decision to place her in foster care. The home that she was going to was wonderful, the mom was a nurse and had 2 very young children, what more could we ask for. We still brought Kiera home every other weekend and my husband and I had our jobs; he took care of all the many medications that she was on, which was a full time job, and I took care of all the bathing, diapering and feedings.
We had started to see that her left foot was starting to turn in more, it got to the point that it was almost upside down, so this brought us to her 4th surgery. She had the tendons released and had a pin placed in her heel. The hardware still remains in her foot to this day. Kiera was about 12 years old when she broke her femur bone in her left leg. It was such a freak thing. The staff was unbuckling her feet from the feet straps of her wheelchair, Kiera had the tendency to spring both legs up as soon as they were unstrapped, this action unfortunately caused a fracture in her femur. We were all very surprised when the x-ray came back with such a break, I thought that it was her hip that was hurting her. The strange thing was that Kiera was not crying, she was guarding, but not crying. I had to convince the ER Doctor to take an X-ray because he did not feel that she was in pain. He was also very surprised as to what he saw. This is when the diagnose of severe osteoporosis pushed it's way into our lives.
Kiera was about 12 years old when the gene was found for Rett syndrome (MeCp2) We were thrilled, Kiera did have a clinical diagnose of Retts back when she was 7, but all the criteria did not fit. We had the test done and had to wait about 2 months for the results.
The test came back negative, she did not carry the Rett's gene.
Kiera's health continued to decline with no answers as to why, we were then preparing for the worst, even her Epileptologist was too.
- Skills I gained, To scoot out of my wheelchair with a verbal direction (scoot)
Skills I lost, To roll over, I lost the ability to communicate, and to taylor sit with minimal assistence. - Diagnosis, Stage 3 esophagitis (ulcer), Severe Osteoporosis, (broken femur bone)
- Surgeries, Left foot tendon release with pins placed in heal
- Genetics tests, MeCp2 gene tested for Rett syndrome (results, negative)
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