So Friday was a bad day, Casey’s nurse pulled out her tube and things were just really stressful. Then Monday came with a new nurse and things just seemed to go from bad to worse. I was so frustrated with the nurses by the end of the day Monday that I didn’t even know where to begin to try and correct/better things.
I called the nursing service after the nurse left on Monday and told them the situation and that we were done with her. They started looking for more nurses for us right away. The only good thing that came out of Monday was a new secretion idea. She asked if we had ever used Scopolamine patches. I had never heard of this before. She said another patient she had used them to help reduce secretions and they helped this other patient a lot.
I did some research on Monday into the patches. It is kind of interesting. They are supposed to block/reduce neuro signals from the brain that generate saliva. It seems like the are most commonly used for other things, but if they work and we can avoid a huge impact from the possible side affects they are definitely worth a try.
Casey has 2 appointments yesterday (Neuro and ENT). Nancy was with us so at least I knew I had a nurse that knew Casey and that I trusted going with me. We went to Neuro first. Nancy and I were talking before the doctor came in and I asked her to be sure and remind me to ask about the patches when the doctor came in. It was so funny, the doctor came in and I am not kidding one of the first things out of her mouth was “Have we talked about the patched for Casey”. We talked some about possible side affects and decided to go ahead and see how Casey does with them. Tim picked them up from the pharmacy this morning and Casey has one on now. It said it takes about 4 hours to see it work. Her 4 hours is up in about 30 minutes. We will see how she does this evening. The patch is one patch every 3 days. The doctor said I can change it more often if I need to or I can add additional patches (or halves) if I need to.
The doctor also went ahead and got Casey on the schedule for the September Botox rounds. We will be going in on 9/28 for her next round. We are supposed to see what we can do with the patches between now and then. If we can get the patches to help with the secretions then she can use more Botox in Casey’s legs. If the patches don’t work then she will use the majority of the Botox in her salivary glands again.
After Neuro we drove on to ENT. Casey had to get her Cholosteoma cleaned out. It was not to bad this time. She cried some, but not as much as the past few times. The doctor said it still needs to be watched but that it is stable. So not good, but also not bad.
The only negative from Casey’s appointments yesterday was that she has lost some weight. I guess I was not totally surprised. She has been so leaky that I am sure she has lost a decent portion of the food we give her. I was sad that she lost weight, but not shocked. We just have to get this leak fixed and she will get back to putting on weight soon.
Nancy and I were talking about Casey’s leaky tube (that is so much worse since Friday’s incident). Nancy mentioned another patient of hers has the same problem. The other patient went into the hospital over night to have the tube taken out and an NJ Tube put in to allow the gtube stoma to heal a little. Just like Casey, there is never a good opportunity to take out the gtube since it is almost always in use. This sounded like a really god idea to me. This would be SOOO much better than having to have the entire gtube redone (major surgery). I called her surgeon to talk about possibly doing this.
This morning Casey’s friend, Maya, and her mom, Elizabeth, came over to play. Casey loves to have friends come over. They live about an hour away so it is hard to see them often. It is always nice when we can find a way to see them though. We are going to try and plan a weekend trip for them to come over so Jason (the dad) can come too. Hopefully we can do that sometime soon.
After our play date we had a nurse come over for a meeting. She seemed really good, I liked her right away. She has some other stuff going on this week but will hopefully start working with us on Monday. For now they are looking to give her Monday and Tuesday, possibly Wednesday as well. I was so glad that she seemed to be a good fit.
I just got off the phone with Casey’s surgeon. She liked the NJ idea for Casey. However before we go tot hat step we are going to try one more step here at home. They are going to send us a Foley Cath tube to use that will be much thinner than her tube. Casey had a Foley for the first few weeks after the Gtube surgery way back when. We will put it in then dam it up with gauze and what not and leave it for 24-48 hours. Hopefully that will help the stoma close up a little so that when we go back to her Gtube the stoma is a much tighter fit around the stem. Then if this is still not enough, then we can look at doing the NJ as the next step. Either way, both of those ideas sound fabulous when compared to having the Gtube completely redone. I am very happy to have some new options to work with.
That’s about it for now. I guess that is actually a lot for a post. As always we hope everyone is doing well. I will post more about nurses and Gtube leaks as we go. Hopefully I will have good news to post.