ONE EXTRA "SLEEP"

This picture is Grier and what he did when he got home!! As you can see the couch has been turned into his area!

After another night of hourly urine collection, I was just happy that it was morning and we survived without many issues.... but around 6am the side effects started and Grier and I were battling getting to the bathroom fast enough while pushing the pole along with us- At one point I was running for the bucket while I left him in the bathroom and then the pump decided to quit and have the loudest alarm-- after all that early excitement we got back to bed.
I was determined to find something he would eat for breakfast but failed at that-- he did have some sips of Sprite-- we coasted thru the morning still fighting a fever on and off for no reason they could think of--- but the best news was we could still go home-- So, I knew we could make it to 10pm knowing that--- I left for a little bit and went to get prescriptions that we were going to need when Grier came home-- we had nothing-- ! And then I met Grace and Hayes after school and went to soccer--- really so I could just be outside for a little bit-- Jeff went to the hospital to switch with my mom -- I was coming back after soccer so we could switch again--
BUT the text came in while Grace and I were eating dinner--- FEVER.. 103! I took a deep breath and asked Grace if she was ready and we headed over to LCH-- And what we walked into was not even fit for a MOVIE-- way too much for one family to deal with-- but given that we did not have a choice-- it was handled as best as we could- I can not go into all of it but we had quite a night-
Long story short-- the on-call pediatrician decided he may have the flu-- so they wanted to test him and start him on Tamiflu-- really???? I will eat my words if it comes back positive but I don't think will-- But after she started that process we had to be isolated!! Everyone that came in our room had to wear masks .... Grier fell asleep and I decided I need to talk to someone on the phone-- so I text-ed Anne to call me on the hospital phone since my cell had no service-- We talked for a little bit and I had to go so I told her to call back-- well the hospital cuts phones off at 10--- so I was so mad--- called the operator and told her to let the call come in to our room and she passed the buck to the nurse supervisor-- now I was really mad.... I know why they do it-- patients need their rest... and some people do not have common sense-- but after I explained to them that for two nights they did not care one bit about rest for Grier since they started chemo at 10:45pm-- and I need to talk to someone-
I would like to say I got to finish my call but that is not the case--- !
We woke up this morning and after talking to the doctor he said we could go home by noon-- and we were home at 12:15pm--- He did the chemo at 11:00-- and had his dose of Tamiflu-- still has a random fever --- but they decided to send us home-- We have to go to the clinic in the morning for the last dose of this cycle-- then we wait for his counts to drop... and fever!
I decided after this week if people actually knew the "real life" of pediatric oncology and the havoc it does to a family then there would not be one person not pushing for a cure-
Amy