After 16 days in the hospital split between the PICU and the Oncology floor we finally made it home and are starting to get settled in. We sleep our first night in our own bed and things seem to be going well. Audrey is still having issues with peeing and pooping but they sent us home with medicines to work on that.
As anyone that has ever gone through surgery and on top of that chemo the hardest part is management of regularity. Audrey has been struggling with not going but a little bit for the last 2 weeks as her system is still getting moving after being on the paralytic medications and pain killers. Finally on Thursday she broke loose and oh man did she break lose. The rest of that day and the next she caught up and was feeling and looking much better.
On Friday the 3rd Cole and I went and made our traditional purchases for the 4th of July so that we could blow some stuff up. Kind of felt like things were getting back to normal.
The next morning Audrey slept in very late and when she did get up she was super lethargic. She napped all morning and just laid around the couch. This was very out of ordinary for her. At about noon I told Melissa I was starting to get concerned so she suggested we take her temperature. It was 102.5. One of the many instructions we were given when going home is if her temperature is over 100.4 we were to call the doctor and head straight to the ER. This was no way to start the 4th of July if we wanted some normalcy. We got to the ER and they accessed her port and pulled blood. They sent that to testing and started her on some fluids and antibiotics immediately. The blood came back and her white blood cells were super low and her hemoglobin’s were getting dangerously close to need a transfusion. These 2 things meant we were getting transferred from the ER back to the 7th floor to oncology. Not exactly the plans we had for the 4th. We sent Cole over to a friends for the evening where he could have fun and enjoy the night and Melissa and I set in for another staycation at the hospital. We watched the Fireworks from all over Phoenix and the surrounding areas from our window in the room. I saw at least 5 different displays as well as some seriously cool fireworks coming from houses in the area. It wasn’t what we expected to be doing but was still nice to see.
The next few days we would be battling the fever. The rule is we had to stay fever free for 24 hours before we could go. The first couple of days it would come down after the
Tylenol does but as soon as that wore off it jumped back up. After about the 3rd day we started seeing it stay down for most of the day. Finally the fever broke about in the evening on Monday and stayed away. At this point we would have to come back for chemo if we went home Tuesday night so we just stayed until we got done with chemo on Wednesday. It turned out on Wednesday they were having a jam session and since we knew it would be later in the day before we got to go home we had Melissa’s mom bring Cole up so he could play to. They had a full setup of instruments for them to play and it was so fun watching them.
We finally got the chemo. Blood counts came back good and we got the notice paperwork was being processed and we would be going home again. This time the packing was much easier and we had learned from the last time.