I think I maybe should have stayed in bed today. Casey has a pretty full day so I got early to get dressed and try to get a head start on things. After I got dressed I REALLY wanted some coffee. I got it all ready, pressed brew and stood back to wait for my cup. WRONG!!!! I put the lid on wrong (I do this a couple times a year) and the beans get backed up and clog the line then the water backs up then I have a huge mess all over the counter and the maker. Ugh. I spent 30 minutes (that I did not have to spare) cleaning up the the mess then finally brewed another pot.
Once I finally had my coffee I had to get on the phone with Maxim (our nursing service). I had to call them to discuss the Ann situation. Luckily they have a person in mind that they are going to try and get out here soon for us to meet. Maybe even this afternoon. I do feel a lot better now that I have gotten Ann off the schedule.
After I got off the phone I had just enough time to help Angela get Casey ready for her Ortho appointment. Casey was really tired and slept the whole way there. Shortly after we got there Casey started getting all worked up. We were suctioning nonstop. I was in such a rush this morning to get out of the house on time I forgot to change her Scopolamine patch. I think the one she had one wore out and she was just a little faucet.
In between suctioning we noticed a little girl across the aisle that was wearing a scope patch as well. I started talking with her mom and it was really interesting. Her daughter (Kennady) is actually doing a lot of the same things as Casey. She is 8 and did not have to be suctioned all the time like Casey but other than that they had a lot in common. They have been trying to work with Botox and patches, she had a gtube plugged into to what looked like the same pump we use, she even wore a pink dress to her appointment. Casey was not having a good morning so we didn’t get to chat too much. We did exchange contact info though. Hopefully we can get together sometime or at least stay in contact. They are from San Marcos so I don’t think we can see them often, but hopefully we can see them sometime. It is so rare to see anyone with as many things in common as Kennady had with Casey.
When we went back to the exam room we decided to do a deep suction. The patches have made her mouth and throat VERY dry. When we did the deep suction there was a bit of fresh blood in her throat. Never a good thing. We got her cleared out then gave her some time to see if the bleed would clot. We had to do this a few times before the bleeding seemed to stop.
The doctor came in and overall that part went well. We are going to add OT in her outpatient plan there at the hospital. I hope we can get it the same day as water therapy so it can be one trip. The OT that we see will be able to get us a different type of hand splint as well. I hope we can find one that will work on both Casey’s hands and oral stuff.
Casey was really upset the entire way home. We stop to talk with Kennady and her mom a little on the way out, but Casey was just so upset. We got her loaded up and got home as quick as we could. Once we got her home and settled in we gave Casey her Tobi (breathing treatment). The Tobi is 28 days on 28 days off. We just started her on round yesterday evening. A few days before she starts a round she gets pretty junky. It is amazing how quick these treatments kick in. You can hear her lungs clear up as you give it to her.
Casey was supposed to have PT this afternoon, but after her morning we decided to reschedule. PT thankfully was able to move to Friday. Now we will spend the afternoon trying to get her to relax instead of working her right back up again.
I think that is about it for now. As always, we hope everyone is well.