January 2016 was a blur of exhaustion. On the 5th, Kai went in for scoliosis surgery and they placed Magec growing rods in his back. According to the doc, the surgery couldn't have gone better. Kai's spine was also more malleable than expected, so they were able to get him pretty straight. He still has a slight curve, but it is barely noticeable.
The great thing about the Magec rods is that it they don't have to go in for repeat surgeries as Kai grows. They take a machine and place it on Kai's back. The machine vibrates and lengthens the rods as needed. Technology is amazing. Kai's breathing has also improved, although there is still no word on lowering his vent settings. So far, he remains stable on that end.
The biggest drawback to the rods has been Kai's regression. He no longer rolls as he used to, and makes little to no effort to hold his head up. He isn't scooting around his bed either. However, it has been less than three months, so he still has some adjusting to do. Hopefully with time he will be back to his old tricks.
The rods also make Kai heavier--or at least it feels that way. For whatever reason, he feels an extra ten pounds heavier than before, although the scale tells us differently. Perhaps a big part of the feeling of extra weight is that straightening him out lengthened him a good four inches or so. He has outgrown his adapted stroller, nearly outgrown his carseat and his green chair. It's crazy. So now we are transporting a child who is four inches taller of floppy, dead weight. You know when kids drop their weight and somehow they feel heavier? That's how it feels to carry Kai. I'm worried about how I'm going to continue to transport him around as he gets bigger. He's only four, so he still has a lot of growing to do. The rods make it harder to lift and carry Kai since we can't lift him from under the armpits and we have to be careful to not bend his back--supporting him at the shoulders and hips.
After surgery, Kai stayed in the hospital a little longer than expected due to incontinence. The poor boy just wouldn't give a bowel movement and he was super gassy and backed up. They gave him three (if I am remembering that right) suppositories and two enemas before he finally "went."
Once we got home, recovery was slow. He was in some major pain, but was mostly managed through diligent use of Children's Tylenol and Motrin. January was also the month that one of our nurses had wrist surgery, which left us with one nurse who only came a couple times a week. We went 17 nights without a nurse--not including the time Kai was in the hospital. February was better--it was only 5 nurseless nights. I don't know why they didn't rotate some of the other nurses who take care of Kai to our house while the one nurse was out, but it was the snowflake that caused the avalanche for us and we became serious about switching nursing companies. Unfortunately, the nursing company we were looking into didn't have the staffing to add Kai as a client, so we had to wait until they were able to hire the nurses to cover Kai. Or, as in our case, a void happened because of the passing of another client.
Kai is now doing much better. He still has moments of pain or tenderness when he has been moved too often. He still loves to be held and cuddled, so luckily we can still do that with him. We believe as he gets used to the rods, he will regain the motor functioning he has lost. We are seeing a little more effort to roll (especially onto his back if we have him on his side). He now prefers to lie on his back more than any other position. Little stinker.
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| Before surgery. Notice how he is leaning, and even with the harness he just looks uncomfortable in the chair. He was always tipping himself forward |
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| After surgery. This was taken after OT had adjusted his chair to its maximum height. His head barely fits on the head rest and it can't go any higher. We're working on a new chair |
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| In his car seat. We've adjusted the straps and headrest since, but he will be needing another car seat sometime in the near future! |
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| At home--he's so straight! |
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| Our first outing since his surgery--even though he is now too big for his chair, he still looks much more comfortable than before |
The great thing about the Magec rods is that it they don't have to go in for repeat surgeries as Kai grows. They take a machine and place it on Kai's back. The machine vibrates and lengthens the rods as needed. Technology is amazing. Kai's breathing has also improved, although there is still no word on lowering his vent settings. So far, he remains stable on that end.
The biggest drawback to the rods has been Kai's regression. He no longer rolls as he used to, and makes little to no effort to hold his head up. He isn't scooting around his bed either. However, it has been less than three months, so he still has some adjusting to do. Hopefully with time he will be back to his old tricks.
The rods also make Kai heavier--or at least it feels that way. For whatever reason, he feels an extra ten pounds heavier than before, although the scale tells us differently. Perhaps a big part of the feeling of extra weight is that straightening him out lengthened him a good four inches or so. He has outgrown his adapted stroller, nearly outgrown his carseat and his green chair. It's crazy. So now we are transporting a child who is four inches taller of floppy, dead weight. You know when kids drop their weight and somehow they feel heavier? That's how it feels to carry Kai. I'm worried about how I'm going to continue to transport him around as he gets bigger. He's only four, so he still has a lot of growing to do. The rods make it harder to lift and carry Kai since we can't lift him from under the armpits and we have to be careful to not bend his back--supporting him at the shoulders and hips. 
After surgery, Kai stayed in the hospital a little longer than expected due to incontinence. The poor boy just wouldn't give a bowel movement and he was super gassy and backed up. They gave him three (if I am remembering that right) suppositories and two enemas before he finally "went."
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