Monday morning came and Casey was still not doing well. Now in addition to needing oxygen at night she was needing some help during the day as well. her seizures were increasing and the amount of stuff she was needing suctioned was out of control.
We talked with Casey’s doctor thinking it must be a respiratory issue. Possibly still leaning toward a pneumonia even though the previous checks said otherwise. Her doctor wanted to order blood work and chest xray as well as some images of her stomach since we are still having the carafate clogging issue. We also talked about getting some IV fluids since Casey gets dehydrated so quick and easily.
We had a few choices, we could drive all over town to different labs and xray places while trying to coordinate with an infusion company to deliver fluids and our home health company to get a nurse out to start the IV. This coordination would have gone well into the night and possibly not even have been done in one day. Another option was to do like we did back in November and direct admit Casey to the hospital, get everything we need, then head home. The trick with admitting is that as soon as she is admitted our home nurse can no longer be on the clock. If Tim were home, we likely would have gone this route. However, since Tim was in India, we had to go with plan C. Our final option was a lot like the direct admit, but instead of admitting we go to the ER. We did run a big risk though. If they had found anything there was a chance they would have wanted to admit Casey. If the nurse has to leave then I have no way to get Casey home, I have no one to sit with her so I can go to the bathroom, it is very stressful to even think about.
Casey’s pediatrician called ahead so that the ER was ready for us with a plan. When we got there we met her palliative doctor who let the ER team know that Casey is set up at home and that he supports the plan of getting us out of there ASAP. Casey’s nurse stayed a little late that day since we didn’t get home until 7 (she was only scheduled until 6). Casey was a trooper and did great. We always joke that in the ER someone always says ‘hmmm, I have never seen that before’ We were waiting for it. Sure enough the ER nurse was not able to find a good vein so she got the charge nurse. When the charge nurse came in she used something called a wee light that helps to find good veins. When she put it to Casey’s arm she just saw straight through it, no veins at all. They ended up having to call in the PICC team to place the IV. They did finally get it, and sent off all her labs while she got some fluids.
All of her labs, xrays, everything looked great. No one had any clue why she is having so many issues. We already had appointments scheduled Wednesday and Thursday with her specialists so they sent us home and suggested that any additional tests be ordered out patient during those appointments.
Tuesday was the only day all week that I did not have anything scheduled for Casey. I decided to take the morning to go check in on my grandpa who had been waiting on me to take him to the bank. When I picked him up he was not doing great. After 30 minutes he seemed a lot better so we ran some errands and I took him back home. That night I got a call from the nurse at his assisted living facility telling me that he fell and hit his head and had been taken to the ER. When Casey’s night nurse came in I called the ER and talked with his nurse. His nurse called me every few hours to keep me in the loop. They ended up admitting him for low sodium, but luckily his head was okay.
Wednesday Casey went to see her neuro. I checked in on my grandpa in the morning then came home to get Casey to her appointment. The appointment went okay. Her doctor added a new seizure medication to help with her increased seizures, but she didn’t really know why Casey was having so many other issues with breathing and her stomach. We talked about a few other big picture things, but other than extra help with seizures we still didn’t have any answers.
On Thursday Casey’s breathing was even worse. We had to drag the oxygen tanks with us to her appointment with GI in the morning. He said there was not a physical reason that would cause the carafate to clog in the catheter, but suggested we try a bigger catheter and possibly we got a bad batch of carafate. He wrote some orders for these things and told us to try them. If they didn’t work to let him know, but hopefully if we can get the carafate into her stomach it will reduce the seizures being triggered by pain/discomfort and if she is not sick to her stomach maybe she will stop wretching and stop pulling so much secretions up. It was worth a shot.
We went and grabbed lunch then headed to the hospital for physical therapy. Casey got to see her boyfriend and that seemed to make her feel a lot better. She really showed off during therapy. She did great and we were able to take off the oxygen. She did better and looked better at therapy than she has in weeks.
After therapy she had to see her ENT. Her ears looked better than they have in a while. She didn’t even have to get them cleaned out. AND… they had My Little Pony stickers at checkout. Her bad morning turned into a pretty good afternoon.
Friday morning she wasn’t feeling great, but I promised her some pool time. The pool seemed to really perk her up. The new medications we all ready too so I went and picked them up so we could get them started.
Tim came home Saturday and that was the first night in over a week she was able to go with out needing oxygen. We were finally able to get the carafate into her stomach this weekend too. Once we got it in, she started to look and act much better almost right away. We have spent weeks thinking she had pneumonia or something major going on and it ended up being a bad batch of a medication that she needs. I’m glad that we have answers, and I am even more glad that Tim is back.
I was trying to find time to help with my grandpa who is still in the hospital while also trying to figure out what was going on with Casey and there was simply not enough hours in each day.
My grandpa is having a lot of issues, but his sodium finally looks better as of today and they are moving him to in patient rehab. Hopefully in a week or 2 he will be strong enough and ready to go back home. Casey has her pulmonary follow up today and things look good.
Our nurse called out tonight. Luckily we have day nurses tomorrow and nothing planned out of the house. The agency we use has a few nurses that are supposed to come out to meet us this week. If all goes well hopefully we will find someone for our Thursday through Saturday nights soon. Finding a nurse is just the beginning. Then we start the training period. That takes a good week or 3. Then we go into trial mode. It usually a few months before we really feel comfortable with a new nurse. Hopefully we will find a good one this week and get the process started.
Friday she is getting Botox in her salivary gland. We tried this a while back and had no improvement at all. This time they will be using ultrasound to insure that they inject the gland and not surrounding area. We should know early next week if it is going to help or not.
Hopefully things will slow down around here and I will be able to post again soon- and hopefully with better news. Casey got some new floats for the pool. I think when Tim is done with work for the day we are going to go check them out. We’ll try to get some pictures of her in the new floats over the next week or so. We hope everyone is doing well & enjoying their summers so far.