Friday in the Hospital

It's been a day of ups and downs for Travis today.  When he feels good, he feels really good; when he feels bad, he feels really bad (the fever gets high again).  His fever was high late last night and we had to get orders from the doc for ibuprofen overnight.  Once that medicine started working, he started feeling better.  The night was okay, they were checking on him throughout the night.  This morning we woke up to him asking for water.  His fever was back.  More medicine and time, he started feeling better.

The doctors came through and his pediatrician.  His pediatrician stated T's is a mild case of pneumonia, but the other factors (immuno-suppressant, the rest of us being sick this past month, etc) makes T's case not so straight-forward.  They are treating him more aggressive than typical pneumonia patients due to these other factors.  His pediatrician also stated that we got on top of it early, so glad we didn't wait any longer than we did.

Scott took today off so he could take Nolan and Barrett to/from school and to stay with Travis so I could have a break.  The research coordinator stopped by to say Hi and see how T was doing.  I was able to go home and grab T's Cars pjs, some things for us, and the remaining medicine and boxes to take to the research coordinator.  That was very surreal to take the drug trial medicine back to her and empty journal forms after turning completed forms into her last Friday for a complete 4-week course.

I received an email from Dr. Viskochil shortly before I arrived at the research coordinator's office. Long story short...data not to a point for FDA approval at this time.  Dr. Viskochil can prescribe the rapamycin and follow T closely like the trial protocol.  This would require insurance approval and I have no idea what the drug cost to us would to be.  I've heard the research cost is $800/bottle and Travis' dose when he ended the trial had him going through a bottle in 17 days.   We can get insurance approval and still have the option of not proceeding forward with the rapamycin as a prescription.  So much handed to us in a short amount of time.

Travis had several visitors today in addition to Scott, Nolan and Barrett.  It was wonderful to see Vanitta, Gwen, Matt, and Jen.  :)  When T was feeling better, he had a rocket ship to paint and a Cars 2 marker coloring set to use.

Travis' fever started spiking again this afternoon and they gave him Tylenol.  That didn't bring down his temp, so we had to wait for another ibuprofen order.  It took a while, but his fever started coming down and he's currently at 37.7C = 99.9F with both ibuprofen and Tylenol.  :)  His appetite has been varied as well; he eats lots when he eats.

Nolan and Barrett are doing good through all this.  Barrett turns 8 on Sunday.  With all that's happening, he'll end up with 2 birthday cakes and a couple birthday dinners.  While we all want T to get better soon, if he's still in the hospital Barrett will still be able to have birthday fun.  

As long as he's spiking fevers we'll be here.  The docs are being extra-cautious with him and that is fine with us.  Thank you for all your prayers, support, and encouragement.