Everyone is doing well. Kaitlyn is getting better by the day. She choked a bit on secretions tonight but overall has been doing very well, just a little more wet than normal. This fall has been awful for colds. I'm really hoping that this is the last cold that we see for a while.
We have been battling to get Kaitlyn some things. We are still fighting to get her into a wheelchair. They e-mailed me the other day and ask when we could come in for another wheelchair trial. I am so frustrated. I told them that I wasn't going to waste anymore of their time, or mine!, until they could get us a proper set up to trial. They have been getting us to use a power base and mounting Kaitlyn's stroller seat to drive from. There is nowhere to attach the type of mini joystick they have for her to try, which is also completely inadequate! It's the little button mini and her hand has to be perfectly over top of it to make it work. Kaitlyn doesn't have anywhere near the strength to balance her hand on the joystick and still have the strength left to move the knob to drive the chair. They haven't any switch operated drive controls for us to try, no proper mini joystick, no eye gaze and no proper wheelchair seating (of any type!). They say that we can't order a chair until we know what will work for Kaitlyn, and what she needs! They also say that the companies are not willing to lend equipment for us to try if we aren't going to buy! There is something very wrong with this picture! So I sent them a bunch of info that I could find, and that was graciously sent to me, about what types of things work for type 1 children and told them to see what they could come up with! I'm going to start kicking up a bit of a stink if they haven't gotten some answers for me by the beginning of next week. I got our social worker involved today, and next week will get our neurologist on board also. If things don't start happening faster now, I'll have to take things to the next level.
On a good note funding was approved for us to get an oxygen concentrator. We have always payed yearly and monthly fees just to keep oxygen tanks in our house in case of emergencies and for when Kaitlyn is really sick. The government will pay for oxygen in the house, but only if the patient needs it 24/7. Which of course Kaitlyn does not. But after her five-seven minute blueberry blue spell a year ago November (aspiration), Tim and I decided then that we would never again be without emergency oxygen.
We are also trying to get a secondary cough-assist for our home. This is something that my husband and I feel is really important. Kaitlyn has no power to her cough, not enough to clear her own airway, even with manually assisted coughs. Without the cough-assist during an aspiration or plugging episode we would have to call EMS and they would give her O2 and take her to the hospital where they would most likely intubate her to secure her airway. Our hospital only has one cough-assist, so even if we took her straight to hospital there would be no guarantees that the machine wouldn't already be in use. The trouble we run into all the time is that nobody really understands how weak Kaitlyn really is, they think that since we manage her at home, and as she isn't trached that she cannot be respiratorily THAT BAD! They see her in clinic and how she is breathing just fine off bi-pap and no difficulties, that they have witnessed, that she must be pretty strong. I sent an e-mail including some articles to hopefully help back our desire for a secondary unit.
Keep dodging those bugs and I'll let everyone know how it goes with our battle for mobility!
No comments:
Post a Comment