Day 6

Yesterday we learned that Kennedy’s treatment would last for 2 years and 3 months.  We are still uncertain if she will be able to start kindergarten in the fall.  If all goes well, it is definitely on the radar as a possibility. 

Today was a hard day.  Kennedy woke up at 7am and threw-up.  I’m glad I came back here to sleep after my date with Maddox because it took two of us this morning.  We washed her hair in bed and changed the sheets.  Instead of her getting better and having her typical ups and downs, she seemed to get worse and just slept.  When she did wakeup, she complained of a headache and nausea.

It didn’t help that there was a parade of folks in and out today – 2 volunteers, a social worker, a radiologist to take an echo and who could forget he nurses coming in trying to push meds.  The kid couldn’t eat anything, how was she supposed to take 3-4 medications by mouth?  So irritated. 

Today’s nursing crew really got under my skin and I went a bit crazy on them.  They refused to leave the meds for us to administer.  All of the nurses prior to today would allow us to keep the meds until she had one of her “ups” so we could get them down (we usually can get things down with a bit of coaxing).  This nursing team would not leave them, therefore, when we finally got Kennedy to agree to take something, we would then have to wait 10-20 minutes for the drug and/or nurse to actually arrive.  By that time, she was having a down moment and couldn’t take them.  The nurse then took the meds away – again….so the process took 2 hours to get her morning meds down.  I went totally crazy and definitely made my opinion known about the stupid rules.  Dr. Manera was irritated they did that and said he would ensure that doesn’t happen again.

Between 9am – 12pm, we orally pushed her a steroid, Zantac, fluconazole and Tylenol.  What an accomplishment to get down when she wouldn’t even eat.

By around 1, she started coming around and ate a pancake.  There was a 2pm magic show.  We stayed for most of it and Kennedy was the trusted assistant once again.  Her cute little giggle is contagious.  She began getting ill towards the end of the show so we went back to the room.

The rest of the day was uneventful except the doctor came and said she could go home tomorrow!!!  I’m trying to keep the excitement at a minimum because of course anything could still change.  She did have some blood in her urine so that may be an issue.  I will know later.

She will get more platelets infused tonight.  Then we just wait and see.  Gene went to take Maddox to wrestling so it is a girls night for K and me.  Looks like a movie night…or maybe some arts and crafts.