Mom's Thoughts on Today

It has been a very trying day with Rebekah. At times, it is clear that she is not feeling well, and at other times she seems to be doing just fine. When she coughs, she gets agitated and throws up and gets more agitated and throws up more. It has never been huge volumes and some of it is mucous, iand it is probably good to get rid of the mucous that might be bothering her throat and making her cough. Then, after throwing up, she settles down and seems to be feeling fine.

By Noon or so, it was clear that the Benadryl, Tylenol and Zofran (anti-nausea) medications were not the solution to the problem and something needed to change. We (Mom and the doctors) opted to add Ativan (an anti-anxiety medication that is also sedating) to see if that could at least help the cough-agitation-vomit spiral that we seemed to be in. The dose of Ativan is pretty small, designed to "take the edge off". Shortly after the first dose of Ativan, she coughed and didn't get too upset and didn't throw up so Mom's hopes were up. Then, a while later, she coughed and threw up again. Uugh!

After throwing up the last time around 4pm, she has been sleeping for the most part and has seemed reasonably content most of the time. I just hope that she sleeps tonight, too.

We stopped her tylenol at noon today (she didn't get the noon dose) so that we can see if her fever returns. Once it has been more than 24 hours since the fever started, they want to know if it is going to come back and if it does come back they will take more blood for cultures. She has to be in the hospital for at least 48 hours from the first blood culture and has to be fever free for at least 24 hours before going home. After noon, her temperature rose slowly to 38.3 C (100.9 F) and has bounced back and forth between 38.3 C and 38.1 C (100.6 F). It isn't considered fever until it reaches 38.5 C (101.3 F), so we've been toggling on the edge for several hours. Not knowing what our plans will be is difficult, but we are learning that it has to be our way of life.

Between the vomiting and the diarrhea, she has needed new clothes and new bedding too many times today to count. We've given up on tucking sheets and blankets in, knowing that they are only temporary. Thankfully, we've had several hours without either vomiting or diarrhea. She's been sleeping the whole time, but that is probably good.

She has had a number of visitors today – Speech Therapy, Occupational Therapy and Physical Therapy have all been in. She seemed to enjoy playing with each of them. Grandma C stopped in for just a few minutes to see if we needed anything. When she is in for unscheduled hospital stays, the Pediatric Residents follow her (in addition to the Oncologists), so we've seen two different Residents today, too, in addition to the Oncologist and the nurses who have been in.

I have spent most of the day in the room. Because we are in an isolation room we have two doors which need to be locked, so it is pretty isolating. We were able to get my computer working on the internet - thanks to Daddy buying a new network adapter. My old one had died. Now, at least, I can feel somewhat connected to what is going on in the outside world.

Rebekah just woke up and wants to be in Mom's arms, so I'd better get this up and put the computer away. Please continue the prayers that we can get things under control. Fevers need to go away, diarrhea and vomiting need to be under control and white blood count needs to be going up before we can even think about going home. My guess is that it will still be a few days. Only time will tell. If we were to go home too early, then we risk another emergency trip back.