The last few weeks seem like a blur. It has been one thing after another and I feel like we are barely coming up for air.
On February 10th my grandfather passed away. He was 92 years old. He lived a long and full life. We were not expecting him to pass when he did. It came as a huge shock to all of us. I find peace in the fact that he went quickly. That is what he would have wanted. He and my grandma are back together again. He never recovered from losing her. I miss them both dearly and it seems so surreal that he’s not with us anymore. He was the one that was going to live forever.
My mom and her husband and their dog came in that night to start on funeral details. My uncle, my mom’s only sibling, came in on Friday morning. They all stayed with us. Casey has not been doing great for a while and having a house full of people was hard on her. Anytime her schedule is off she has trouble adjusting, but more so now than ever before. The funeral was on Saturday and the burial on Tuesday morning. A friend of ours and a night nurse of Casey’s stayed with her Saturday so that Tim and I could both attend the service. On Tuesday Casey stayed home with Tim and her day nurse while I went with the rest of my family to the burial. By the time I got back home with just my uncle (my mom and her crew left from the cemetery) Casey was much more relaxed. She had a great day on Tuesday. She slept a lot Tuesday and Wednesday to recover from a long week.
A friend that we met online about 4 years ago has a daughter very much like Casey. They live in Canada and she had to travel to Austin for work on the 13th. The timing wasn’t great, but we were so glad that she was able to swing by for a visit. She got to meet Casey and see how we do things in Texas. Her daughter and Casey are a lot a like- and a lot different. It’s always nice to meet families that we reach through Casey and this site. I wish that our girls were up for travel and could meet each other as well.
Wednesday night Casey had a nurse that we have been having a few concerns. The shift went HORRIBLY and Casey was beyond stressed out. Thursday Casey was a huge mess. She was not breathing well and when we went to put on her bipap mask she threw up (she has not done this since her surgery in April 2013). Her oxygen was in the 80’s, which is why we were putting her on bipap. When she threw up it was pretty obvious that she aspirated (most of it went right into her lungs). Her oxygen went into the 70’s and we had to do a lot of interventions to get her back to stable breathing. We talked to her doctors and got her started on an antibiotic to fight off the impending infection/pneumonia from the aspiration. We took the night nurse off of Casey’s schedule as well. All Thursday day and night we gave her lots of breathing treatments and worked on clearing out her lungs as well as we could. By the weekend she was breathing much better. She is still on antibiotics, which has its own issues, but hopefully once we finish the cycle she will finally recover.
On Friday she started out okay, but had a bit of a melt down just before lunch. Of course, about 20 minutes into the melt down when she is at her worst is when a new nurse came to meet us. We really liked this nurse and had hoped she would pick up Friday days with Casey. Sadly, we scared her away. Casey can be a bit much to handle so I can understand why she felt it was just too much. We are looking for a Wednesday and Thursday night nurse now and a Friday day nurse (with the potential to do some weekends too). Hopefully we can find a good fit fairly quickly.
In addition to Casey’s health and our nursing coverage we also changed our respiratory supplies from one DME to another in January. It started out fairly smooth, but now I am in a billing/insurance mess. Our original company never provided the parts and services we needed (even after spending over 3 hours on the phone trying to get the items ordered and multiple calls back to try to get status updates). The horrible customer service and inability they seemed to have to fulfill Casey’s needs led us to find a new company. Now we are getting bills from the previous company claiming they providing the parts/services which they did not. I have already spent way TOO much time on the phone trying to correct this and they keep forwarding me from one person to another and eventually disconnecting the call. I have reported the false claims to our insurance company as well. Maybe when they see a fraudulent charge they will have better luck getting a resolution that I am. To make matters worse, their false charges are making the new company that IS providing what we need get denials on the real claims they are filing. Ugh!!!
Girl Scout cookie season is coming to an end. Casey has a few boxes left that have been spoken for. As soon as they are picked up we are done with Casey’s inventory. She loves being a girl scout and I don’t mind the work that goes with cookie sales- the timing is just bad right now. There is way too much going on. I think a spa day is in my near future (or at least a spa hour).
