Thursday.... already back at LCH !

Thursday Night ..... Guess where we are?????? No-- not home but at Levine Children's Hospital~

You read the top line right.... Grier spiked a fever last night and we were admitted because he is nutrepenic.  (sigh) I knew we had an 80% chance of this happening and with our luck I was not surprised.  So we packed our bags last night at 11 and got here ready for the "drill" by 11:30--- Yes.. they asked me if we had any pets at home.... :)  I was a little more laid back because Grier did not have to be accessed -- he was getting IV fluids at home so we could eliminate that trauma... Grier has not felt great all week... yes, the vomiting has slowed to once or twice a day.. but he still has lots of fatigue and just is not himself.
We will be here until his counts show a trend in rising... that could be a long time... so I am not near ready to start a countdown.

I am going to back up..... Tuesday and Wednesday were busy.... we went to clinic on Tuesday and Grier was not happy.... so i am assuming he was feeling terrible that day too... We have be assigned a KIDS PATH nurse again.  She came out and drew his labs at our house on Wednesday.  This saved us from going to the clinic.  He really needed a break from going over to the hospital... so as easy as it is for us to drive a few minutes I decided she could come to our house to get his lab work.  We knew Wednesday after the counts came back from the lab that he was dropping.  His hemoglobin level was low and his platelets were dropping quickly.... as well as his white blood count.  The plan was to go to clinic on Friday and checks them again and most likely get the first of many blood and platelet transfusions--- I am sure that will happen tomorrow.. but we are here in the hospital so it will be no big deal....When we do both in the clinic it is an all day affair....

Back to today... Grier and I had a pretty restful night --- especially for being in the hospital.  We had our favorite night nurse ~ He has slept almost all day so it was pretty quiet... He did ask for a banana around 10... and after 5 calls still no banana... I was busy looking online for a Yankees "bucket" hat that I could give him when the hair is gone.  I also was looking for PJ pants... or LOUNGE pants... since we have gone through a few a day.... And thanks to Facebook... we are set... I asked for suggestions of stores and three elves ( Karen, Lesa, and Susan) went to work shopping for pants... and let me tell you it is not easy ...... Lesa and Susan brought the cute PJ's --- and we had a nice visit while Grier slept.  Susan got the banana we had been waiting all day for.... and when Grier woke up he took the tiniest bite.... but I think she learned her way around LCH while she was searching for a banana.

This is just a small description of my week so far.... does not include any activities that Hayes and Grace have had... plus the fact that I just don't get to focus on much they do anymore.  Sucks... I wish I had some of the days back where I could eat lunch at school and be more involved... but I am totally focused right now in Grier's 3rd fight.  The best thing that I did after relapse in August was to find help with Hayes and Grace--- It allowed me to focus while I was away so much ( almost 3 months) because I knew they had a consistent routine thanks to Haley filling in for me--- Now we have MacLean... she is filling in so i am not trying to do everything and totally wearing myself ---It only took me 3 years to figure this out..... :)

ICE has kicked G's butt-- I am hoping it is doing the same to Neurblastoma cells.... I knew this would be the case but obviously forgot about those early days of chemo.... I have not put any pictures up lately but I will try to soon.  I know our days are numbered with his hair this time... and I am hopping he does OK with it.  We also had one unexpected thing happen today.... and that is a positive blood culture.  We are hoping it was a contaminate and not a true line infection but only time will tell and repeat cultures. He is being treated with two strong antibiotics just in case because he does not have an immune system right now.... This is not something we want so hopefully we will know soon if it is a line infection or not.  I think that is enough for tonight... I know some of you are waiting on me to respond to emails..... I am working on them :)---- this week quickly went from bad to worse.... Thanks for all the help today .... and for the meals...