We left the ICU a week ago, and spent the following 7 days in the ortho rehab unit at Children's Hospital. She was very weak, as she had just come off a week of a medicated coma, two surgeries, and was recovering from pneumonia. She received 3 therapy sessions a day (physical, occupational, and speech). All three were hard at first, but as the week went on she got stronger and stronger. In physical and occupational therapies, she practiced walking with a walker and was able to sit on a bench upright, unsupported, even by her own arms. Having a halo on her head makes her top-heavy and off-balance, a challenge for anyone but especially for A, as she already has a balance disorder. Speech therapy started out rough, as her speech was very, very slurred and inarticulate (mainly a side effect of the breathing tube that had been down her throat for a week) but it got better and better. Finally, she was cleared from the therapists to go home, and she got home yesterday afternoon.
Now we are adjusting to life at home. Here are some of the things we have to change and/or get used to:
- She can't have a shower, or even a regular bath. The halo is attached to a fleece-lined vest, which anchors it in place and doesn't allow her neck to move while it heals (you can kind of get a sense of what it look like here, although hers looks a bit different). Because the vest is fleece-lined, and the vest is never, ever removed, it can't get wet. So we have to give her sponge baths. Additionally, we can't wash her hair easily. Websites suggest laying her on a counter with her head in a sink, but we are going to order a waterless shampoo, just like they used at the hospital.
- Because she can't move her neck even a millimeter in any direction, she is always looking straight ahead. This means adjustments on the couch, in bed, and at the kitchen table with different pillow combinations to make her feel comfortable. We are still playing with this, trying to find out how best to make her comfortable.
- She now has a walker to help her walk at home, and a wheelchair that we will use when we go out, and when she returns to school in a few week. I am getting acclimated on how to use the wheelchair, especially on how to take it apart and put it back together (which I have to do to get it in and out of the car). I need to be aware of where I park, and where ramps are to get her up on the sidewalk.
- She literally needed a new wardrobe. The halo is so big that nothing can go over her head; everything needs to be either buttoned or zipped around the front or back. However, even those clothes need to be a much bigger size in order to accommodate the halo's rods. She is normally a size 6 in shirts, but now we have her in size 8-10 hoodies, etc, with large tank tops underneath. We are still figuring this one out. Unfortunately, I don't sew, but I think I will be cutting the shoulder straps on the tank tops, slipping the shirt on her from the feet up (they are big enough) and then safety pinning the shoulder straps back together once they are on. This way she'll have a tank top underneath and a jacket on top. She even needed new pajamas. Luckily, she can still wear her old shorts and jeans. And this is only for a few months; when she gets the halo off in mid-January, we can go back to her regular adorable wardrobe.
- We have to clean the 6 pins (which are drilled into her skull--one above each eyebrow and 2 above each ear) twice daily with sterile q-tips and hydrogen peroxide. After caring for her tracheostomy and feeding tube for 4 years (these were both removed over 2 years ago), this is so simple!
I have never, nor will I ever, complain about what we are going through. We can get through a few months of this for the trade-off of not having to deal with this for a lifetime.