On Tuesday our new nursing company (PSA) came out to admit Casey. Overall it went well. We really like our case manager. When everyone left Tim said he wishes she could be our nurse. The nurse that came out is very sweet. Casey is having a rough time adjusting. She has been having a hard time in general.
The Scopolamine patches have been working to dry her up. However they tend to over dry. I can’t seem to find the perfect balance. She is either too dry or a little faucet. This makes all things much more complicated. When she is too dry I can’t suction. You can’t get anything into her airway to clear it out. She also has a hard time and makes these awful choking sounds. Her dry throat makes her miserable. However if I back off the patches it is just as bad. She requires CONSTANT suctioning. I took off half the patches last night around 8 when I could not suction at all. I took off the other one this morning when she was still having trouble. I think I am going to have to leave off the patches for a few days to see if I can it all out of her system. Then maybe I will try to slowly add a much lower dose back in.
She is making these choking sounds and crying all the time. It is really hard to hear her struggle. It makes it a hard time to train a new nurse too. When Casey is so fussy and all over the place I just want to pick her up and calm her down. I am trying really hard to keep the nurse involved. It is really hard for me to step back when she is going through a hard time. I am working on balancing training with necessary “Mom” care too.
The next few days are going to be really hard. We have to get this Scopolamine out of her system though. I guess we will really test the new nurse right off. If she can go through this with us then she will be up for the much better days ahead.
If this is not enough to deal with I am having diaper issues too. They finally put Casey as incontinent so we can get diapers covered through insurance. The diapers that we get are awful though. They leak so bad. It seems like every other diaper I find her in a puddle. I am hoping it is the way we put it on. Maybe I can figure out a way to get them to fit better and reduce the leaks a bit. Until I figure that out I am doing lots of extra laundry.
It’s always something. We have been talking about trying to plan a little mini vacation to San Antonio to take Casey to the zoo maybe in November sometime. I am WAY overdue for a vacation. I can not wait!!!
Casey has her therapies at Dell today and tomorrow. She will wear her costume. I will be sure and get some pics to post later. She will be so cute. As always we hope everyone is doing well.