A little more coming at you...........
Just six days after brain surgery, Cole was sent home. I was scared to death. I didn't think he should be sent home yet. He was still of steroids and still having problems just turning his head. The doctor on call assured us that everything was ok and Cole would do better at home. So home we went.
Cole did seem to improve slowly over the next day or so. He was very swollen from steroids when we left the hospital and we saw improvements soon after being home. He even rolled over in his bed on his own. February 8th was Fat Tuesday. Cole celebrated it by sleeping, and sleeping and sleeping some more. One whole day. We would wake him up to eat and he would immediately fall right back to sleep. He had a low fever which the nurse said was ok and not a big deal.
The next morning, we woke up to a 105 temperature It was indeed a big deal now. We rushed to the emergency room. They determined Cole had an infection of some sort, possibly staff, and maybe meningitis. We were more scared at that moment than any other in the weeks before. We watched a doctor and nurse insert an IV in each of his little hands and proceed to do a spinal tap. Cole didn't even cry. He barely flinched for each needle. Later we realized what a miraculous thing that was. He's had so many spinal taps, or lumbar punctures since then that we lost count. Each time after that, he would have to be sedated for the procedure. It was very rare for a child to be awake during such a thing.
Once the antibiotics were flowing and the temperature was down, things got much better. Cole was back to his new self. He was trying to move around in the bed and talking and laughing. By that afternoon, we felt relief once again. We went back to ICU and would remain there for several more nights.
The pediatric oncologist visited with us many times and let us know that they sent tumor tissue to other hospitals for second and third opinions. We asked for a fourth - St Jude Children's Research Hospital. In this day of technology, you can't search for pediatric cancer on the internet and not find a link to this hospital, so we thought they should be checking on Cole, as well.
*** Those days seems so long, buy my thoughts about them just a year later were much shorter that I expected. I haven't read this is a very long time - but I'll never forget!!