We have learned with Casey that we could have a great morning and then the next thing we know we are running around like a bunch of headless chickens trying to figure out what the heck is going one an hour later. Luckily we have really understanding friends and family. This often means we can not commit to ANYTHING ahead of time. We reply maybe/hopefully to all types of things and then often have to cancel because we simply can’t leave the house or if we leave it is to drive directly to a clinic or hospital. I can’t begin to count the number of things we have to had to cancel.
We finally have our new night nurses trained and Casey was doing pretty good so we decided to find some time for us. Between me being on nights all summer, Tim having to travel a lot for work, and Casey’s usually crazy stuff we hadn’t had much time to spend together. Tim was relieving me so I could sleep then I would relieve him to go work. It was just a summer long tag team around here.
Spending time on us is not an easy task. Even though we have most of our nights covered now, our weekend days are not typically covered. In order for us to leave someone has to be here. Going to catch a movie or quick dinner is usually not too bad if we can get a nurse to stay late or come in for a few hours on the weekend. Leaving for more than a few hours is next to a miracle.
About 4 years ago we lined up nurses and backup nurses and had a nurse stay at the house so we could leave for 26 hours. We checked in about 20 times during that period and luckily Casey did really well. That was 4 years ago, and each year her health and needs worsen.
We had one of our nurses stay over Wednesday night and lined up back up day and night nurses to cover a 20-24 hour period so we could get away. Tim and I went to San Antonio. We walked around on the riverwalk, had a really nice time and yummy dinner. We checked in on Casey often and things were fine. Then as we were eating dinner Casey’s nurse texted to tell us that she was a huge mess and nothing was working. We got the check and were prepared to drive back home (we picked San Antonio so we could be home in 90 minutes if we needed to be). Casey’s nurse texted back and said she was finally turning around, and that she thinks everything is okay and not for us to rush home. We went back to the hotel and spent the rest of the evening checking in with the nurses every 30-60 minutes to make sure Casey continued to improve. If she went back the other way at all we were ready to get on the road. By about 4AM Casey was doing much better. Tim had work and we were still worried about Casey so we got on the road pretty early to get back home.
It was nice to get away, and very over due. It’s just so hard to know that she can be great one minute and a huge mess the next. We have a very well stocked home with medical interventions, we often call it the BICU (Barnes ICU). This helps us keep her home where she does much better. A lot of these interventions are for respiratory issues. While we were gone her nurse had to pull out pretty much all of the respiratory stuff.
One thing that Casey uses is a bipap. This machine is her least favorite, but it works very well. When she has any collapse in her lung the bipap uses pressure to push air in and out of the lungs and it helps to open them back up. The bipap also helps with pressure when she has mucus plugs that she can’t clear or other obstructions that limit her airway. Up until very recently (weeks ago) to use bipap we had to strap her into a mask to use bipap. The mask fully covered her nose and mouth, but getting a good mask for her is tricky. She drops her chin and breaks the seal. She can’t wear most of them since they have a T bar that comes up over the eyes/forehead. Since she can not close her eyes or blink the T bar is a big risk for her eyes. Then she needs frequent suctioning so we have to break the seal, take off the mask, suction, then get it back on. It’s not fun and she HATES it. Neotech, a company we LOVE and use many of their products, has a special cannula that can be used with bipap/cpap. They sent us some to try and Casey does really well with is. A lot of the pressure is lost through her mouth since she can’t close it, and the cannula works as a cpap (constant pressure) as opposed to a bidirectional pressure. It’s not delivering as much pressure so it is not quite as effective, but while she is wearing it we can still suction, she is not angry, she can wear it all day where she only tolerates the mask for an hour or so at a time.
As long as we catch her respiratory issues early, the cannula is a great option for her. She needed it last week while we were gone, and then this morning she started to do the same thing again so we got her all hooked up. After just 30 minutes she already looks MUCH better. I am sure when she gets really sick we will still have times we need to use the full mask, but I am loving the cannula option, as is Casey.
I went to Ikea this week and bought a new little cart. Now we have a respiratory cart to keep her bipap, cough assist, extra tubing, etc all together and handy whenever we need it. Our house really is tuning into a little ICU.