LONG WEEK!!!

Sorry I haven't posted all week. It has been a very long week and I did not have access to the laptop that I usually take to the hospital with me when we are there. Yes we were at the hospital again. It all started Sunday night after my last post. Avarie had started to have a little cough but it was very dry and not violent at all, so I knew I just needed to watch it. I was up late that night posting and getting some laundry done. I went to bed about 1am and was then woken up just before 3am to Avarie saying she didn't feel well. I then noticed that her cough sounded deeper, and wetter and she was saying it would hurt when she breathed. I also noticed her chest rising and falling much sharper then it should. I decided to call the Dr on call and she wanted me to bring her in right away. So at 3am I was up and getting some bags packed. Craig was not at home and so I had to call a neighbor to come and sit with the other kids until he could get there. I then took Avarie in to the ER where she was admitted for observation. Her cough ended up sounding a little better as the morning wore on but her voice became like a hoarse whisper. So we knew she had something going on, but since she had no fever and her oxygen levels were good they sent us home around 5:30 pm. But not before removing her nose tube since shew as eating had been eating so well. Of course things never like to go smoothly for poor little Avarie and the tube became stuck on the way out. They could not get the tube to come out of her nose. It was stuck on something in her throat and nasal area. All of sudden Nurses and Drs were running in to check it out, no one could figure out what happened so they called for an x-ray "STAT". The x-ray was there in about 5 minutes, but while all of this was going on Avarie is just laying in the bed screaming with this tube partly out of her nose. It was one of the more traumatic things for me to watch. Luckily the x-ray showed that the tube had just turned funny on coming out and so they flushed it with saline and lubed it and gave it a good pull and out it came. Avarie was fine once it was out and was actually so happy to show off to everyone that the tube was out of her nose. She hasn't been without it in over 2 months.
We got home around 6:30. We started getting ready for bed around 8. I was doing her nightly meds and dressing changes when I noticed that she felt warm to me. I wanted to laugh when I took her temperature and it said 102.4. Instead I picked up the phone and started making calls to take her back in. Luckily this time it was at a decent hour so I could call and make arrangements for the kids the next day. I was so tired from only having a little under 2 hours of sleep in almost 48 hours so I had Craig drive us and my Mom came and stayed with the kids. When we got there she was almost 104 so we were admitted and we have been there ever since. She has not had a fever since Wednesday afternoon, we think the antibiotics she is on are helping. So if she continues with no fever during the night she will come home tomorrow(Friday). She has chemo and a Lumbar Puncture in the morning and then she will be good to come home.
As long as she doesn't get sick again she will come home for about 9 days and then she will go back for her next round of chemo which requires hospital stay. When she gets the big chemo drugs they keep her there to monitor her, but other times there are smaller chemo drugs that she can get as an outpatient. That is how most leukemia patients get their treatments. Most do not have to stay in the hospital for their Chemotherapy Treatments, but because Avarie is Extremely High Risk ALL she has to have the big drugs.
So I am home tonight and Craig is up at the hospital with her. He wanted me to have hopefully one good night of sleep at home in my bed before we bring her home. She can be like a newborn baby with her sleep at home. In the hospital she sleeps great, but at home she wakes up a lot. The Dr's say it may be a little Post Traumatic Stress from everything she has been through. It did start to get better this last time, we just weren't home long enough to let her fully heal from it all.
So I am off to bed tonight with all three of my kids in my bed. I hate sleeping alone and I think they have all missed me and once Avarie is home, sleeping in here is not an option because she is in here and we are up and down with her so much at night.