Tyson's Brave Battalion

Tyson's Brave Battalion
Things don't go wrong and break your heart so you can become bitter and give up. They happen to break you down and build you up so you can be all that you were intended to be.” ~Samuel Johnson

Monday, May 7, 2012

Hospital day 11

It was very strange to drive home last night without Ty in the car with us and it is strange to be home without him.  He told daddy today that I am the snuggle mama and he is the fun dad.
Yes he's had the same shirt on for like 4 days now...I made the mistake of putting one on him the day he was off fluids.  Then they put him back on acyclovir which means he needs to be on constant fluids to protect his kidneys so he hasn't been unhooked since... which means he can't take his shirt off cause his arm is hooked up to the IV pole.
He was pretty excited to wake up to a giant cinnamon roll this morning and said to dad: 'I even like the parts with no frosting.' 
Good news! His ANC is 200 today!  That is still considered in the dangerous neutropenic range, but it is progress in the right direction! Finally!  The oncologist who is on this week told Ty's dad that if he continues to improve he might send him home tomorrow or Wednesday! Yay!  They have to figure out what cocktail of meds would be best to send him home on.  Hopefully not neupogen!  WBC 2.8 up a little, RBC 3.56, HCT 30.4, PLTS 44 down a little and he weighs 16.5 which I think is the same as when he was first admitted. 36.3 lbs.

The Infectious Disease doc who is on this week doesn't seem to be as concerned about his lip as the other doc was.  I guess it oozed and bled a little in the night, and so his scab looks a little bigger to me in the pictures, but it is hard to say without being there.  She said it is probably his way of pushing the junk that was in his lip out but she does want to keep an eye on it for a couple more days.  She also would be expecting to see other signs of illness if it were something more sinister and he's doing so well!  This is all hearsay of course since I'm not there and I'm hearing all of this second hand, but I think that is the gist of it.
Yesterday they were a little concerned about his new picc line cause it was red and tender, but it doesn't seem to be as red today and might just be red and tender because it is new and tegaderm tends to make his skin red anyway.  The nurse taught me how to change the dressing on it yesterday and he was not happy at all!  Dressing changes are painful, that dang super sticky tegaderm!  With all of the meds he's on, if he got an infection now I would venture to guess that would be very bad so whew!  Glad it's doing better today.  They were concerned about it right before I went down to hospital church.  That was such a great meeting, I'm so glad they do that for the families who are there.  It was hard to sing the opening song "I'll Go Where You Want me to Go Dear Lord" cause it has such a different meaning now than it did in the past.  It was good to hear testimonies of some other parents of children who are there. I'm sure most if not all of the parents there are dealing with a child who has a life threatening illness. 
So dad and Ty are in Xbox heaven, having a fun time today and waiting out the stay.  They built a fort yesterday with blankets and the food tray above his bed, and I just got a text from him that says 'he is keeping me busy!' 
Oh and with the busyness of Saturday I didn't get a chance to post pics of the kids coming to visit which was so much fun!  Ty loved having them here and I took them two at a time down for some lunch so we could have some time together and I could find out all of the happenings of the week at home.
They brought a super cool octopus balloon and some foam rockets which are perfect for entertaining in a hospital room.  Brenna didn't come cause she had a sore throat, probably from her hayfever but we have to be super cautious
Which reminds me of some other super dumb news.  Camping and hiking has always been a big part of our summer and what we look forward to.  With summer approaching we keep forgetting to ask our oncologist about which summer activities will be okay for Ty.  Dad talked to the infectious disease doc today about our little hike a couple of weeks ago, and about camping in general.  She said any time you are dealing with dirt, especially farther away from home you are increasing his risk exponentially, and water adds even more to the risk.  So it looks like we are going to be hotel people for a couple of years, we might have to count Cherry Hill as our camping trips since it is grassy and the water is chlorinated. 
Thank Goodness for Camp Hobe!  At least the older kids will get to camp a little! : )


  1. Amy have you tried Mepore dressings instead of tegaderm? They are less irritating to the skin.

    1. Definitely going to have to look into it now that we will be changing dressing once per week. Tegaderm is stinky! Thanks!

  2. Our kids love Cherry Hills! There are other places like that that will be a fun little outing! Thanks for the updates Amy!