Friday, May 20, 2011

This past visit to the hospital was probably our shortest visit that we have ever had, which was nice, however it would have been nice had we not even had to stay at all.  Tuesday I went to work and when I got back to the hospital, Emily has spiked another fever after having gone over 24 hours of not having a fever. We thought we were in the clear and would be able to go home right after the CT scan at 1230 on Wednesday, but she spiked to 101.6 at 8PM, so they did blood cultures, urine cultures and another CBC to see where her counts where. Tuesday evening her WBC was 2000 (.2) and her hemoglobin was 6.8.  So, Dr Massey got called at home and she wanted Emily to get a blood transfusion which started around midnight. Emily didn't have another fever over night.  She woke very early Wednesday morning and of course she had been MPO'd (which means no foods after a certain time) and was starving at 5 AM.   I was able to hold her until about 630 AM and then she just let loose.  It was a very long morning because she cried about everything, but most of it stemmed from not being able to eat and she was starving and wanted to eat "NOW".  There was nothing that I could do to calm her, so she used her lungs, her legs, her arms to say how she felt.  Needless to say it was a long 5 hours until it was time for the CT scan and honestly nothing I did could get her mind off of eating.  However she gave me about an hour for us to watch Justin Bieber and talk about how much of a hunk he is and his heiny, she laughed for about an hour and then after that, she started again.  This time asking for home, wanting to eat chicken nuggets, I want to go home, I don't want to do the scan and just in general irritated.They were nothing that I could do to calm her, so we ended up having to get her benadryl and while I didn't like doing that, she was screaming bloody murder and her scream could be heard all through the halls....all I wanted to do was to hold her and tell her I was sorry I couldn't let her eat and sorry she had to be put through this hell in general, but nothing worked not evening the lovings and hugs.  I felt so bad and yet she had every right to get upset about not being able to eat.  She has lost weight from the chemo, she had every right to get upset, because she needs to eat.

We did get the CT scan done, and then had a another CBC and Emilys WBC was 3000 (.3), hemoglobin was going up, but platelets went down again.  So, she had to get another transfusion of platelets and after that she would need another dose of antibiotic and then she would be set to go home, as long as no fever.  Emily went home around 7PM, she was so happy to go home.

Plans moving forward, 

Friday Emily has a count check to see how her counts are.  

Weekend, We are taking the girls camping to Va Beach for the weekend for some time away from hospital, time away from choas and just to enjoy to be with family and have a good time.  

Monday, Emily has a Pre-op appointment at CHOP at 1015 and to talk about whats going on, what to expect, where to go and all of that.  We will drive up and then drive back later that night. 

We are not sure if leaving Tuesday night or Wednesday night, but...

Thursday, Emily has surgery.  

I'm not looking forward to the surgery and the birthday of where she will be in the hospital, but we will celebrate a wonderful Happy Birthday when we get back.  Please make sure if you know Emily, don't talk about her birthday face to face on her birthday, just because we don't want her to get upset about it.  She won't know that May 30th isn't May 30th, which means any day could be May 30th based on what we tell her.  We just want her to enjoy her day whenever we are able to celebrate it.  Our hope is still to have the Playset up for her, she will be so excited.

Well, it is after 2AM and I have to work in the AM and then Emily's appt, so I'm exhausted, its bed time.  Got a lot on my mind with processes moving forward, but I think all of that is just normal.

There is an auction going on over on facebook -- Funds for Emily Hubbel, just like the page and check out the auction photos that have been posted. Auctions have started already and it will end May 23rd, so hurry over, for a great cause!!. If you are interested in donating an item, please contact fundsforemily@gmail.com, still accepting items.  Check out theAuction here