We had a follow up with Casey’s dentist last week. Casey has been teething (really since she was about 9 months old). She has lost 10 teeth now and has 15. Her molars are all coming in, and they look so painful. Some are coming in her tongue bed, some on the outside of her gums and some where they should be. Since she doesn’t suck/swallow at all and her mouth stays open she is not giving her gums/teeth the feedback they need to know where they should grow. The dentist is not worried about them (yet) but does want to keep an eye on them to make sure as they come in they don’t get into areas that will lead to trouble.
The neurologist was happy with how Casey is doing during our recent follow up. She still has some seizures, but now that she is able to get the medicine (it just oozed out with her old gtube) her seizures are much better controlled. We started a new medication at night that is actually a blood pressure medicine, but it helps to keep her heart rate down some and it loosens her up a tiny bit. We just give it to her at bedtime to help her get a good night’s sleep.
We have still been having a hard time getting our nursing shifts filled. We finally had a nurse start last week that we are excited about. We have a nurse that as been with us for a while doing 2 days and this new nurse is also going to do 2 days. We just have 1 day shift not getting filled right now. The last week of August there is a nurse that we have been with for a while that thinks she can pick up our remaining day. One of our night nurses has been out for a few weeks with her own family issues. She works 2 nights a week and we hope she will be back tonight. It is exhausting doing the night shifts and still trying to get anything done during the day.
We are still trying to get Casey to take as much volume as she can and trying to get her to gain some weight. The jtube site has it’s good days and bad days. On a good day it leaks, but not puddles. We may change the dressing every 3-4 hours on a good day. On a bad day she still pours out the site and we are changing it nonstop. She is leaking bile instead of food. With the gtube she leaked food that did not harm the skin around it. The positioning of the gtube caused pain and a lot of issues, and when she would leak food she also lost a lot of her medicines. Now the jube is keeping the food and medicine which is very good. However, the bile that is leaking out is causing some skin issues around the site. We use all types of dressings and creams to keep it off of her skin, but especially on bad days it can really look red and inflamed. The positioning is better than the gtube, so we are still in a much better place than we were a few months ago. We just have to do our best to stay on top of things and keep the area as dry and clean as possible. It is a challenge when we go anywhere. Getting her in just the right position, and keeping her there, as proven to be tough. At least 50% of any outing includes a bright yellow, bile drenched shirt. Things could be worse though- heck they were worse just months ago. All in all we are figuring things out and doing the best we can.
We signed Casey up for dance again this year. It starts next month
and she can’t wait. We made sure she is in the same class as some of
her friends too. She has missed them over the summer break. In
addition to dance Casey has still been doing music therapy twice a
month. She does music therapy at home. Right now she is still our
little drop out. We are thinking about (have not committed to the idea)
of trying the home bound schooling option again in the future. We have
decided she will not “GO” to another school unless it is Rosedale. As
of right now we can not get a transfer to attend that campus. If that
ever changes she can go to school again. Other campuses (in our
opinion) are just not prepared for her. We don’t have the time or
energy to be the guinea pigs either; not to mention the stress and risk
that puts on Casey.
We have a few more standard follow up doctor appointments coming up in
the next few weeks. Other than these we are just focusing on the same
old stuff. We hope everyone is enjoying their summers.