The 15th Day

So the calendar says it is Saturday, I really would not know the differences in the days except that I did decide to go to work this week to help myself out!  It felt good to get out as I had mentioned in previous posts, and I do not regret it at all.  We have been in a holding pattern all week.  They stopped the antibiotics on Wednesday afternoon and drew more CSF yesterday twice once in the morning and once again in the afternoon....

Results are as follows, it sucks!  The morning draw had her eosinophil count at 28 and by the afternoon it was up again to 36.  :(   So that is why she is receiving steroids once again.  Well, that was indeed craptastic news, but then today happened... I decided to go out and take a break knowing that Jon was not going to be able to make it to the hospital today, and so Child Life Services (a service of volunteers here at the hospital) had offered to sit with Willow and so that was why I took them up on the offer. Well, since we are so close to home, I figured I would surprise Jon and visit for a few brief moments!  Then grabbed some food and came back, well as I was pulling into the parking ramp, the hospital was calling me.  It was Willow's nurse; I said that I was pulling up to the ramp and that I was sorry for being so late, she said that was fine, so I ask if Willow was okay, and she says she is happy and doing fine but... (can I say how much I despise the word but),

The but was this; she had pulled out the drain from her head. Well really what ended up happening was last night it got caught on the pillow and snagged and came out... The nurse looked at it, called the doctor and the doctor said as long as it is draining into the bag it is still fine.  It was draining properly so we assumed all was well.  Unfortunately it seems all was not well, our guess is that she had pulled it out last night and the tape was holding it in place but because she had loosened the souchers it was leaking a bit. Leaking over night made some of the tape loose and by mid afternoon it came right out while I was gone.  I did not blame anyone as it could have happened if I were here, it started last night and I was here so it is what it is.

She had surgery to put it back in, and they seriously secured it this time as we do not know how long it will need to be in due to her eosinophil count being high still.  Hopefully it will go down enough with the steroids and we can do surgery on Thursday... Please keep us all in your thoughts!


Her sleeping soundly after they replaced the drain.  Despite it all she is still a trooper. 

Comments

Chel said…
That poor baby girl! We'll keep praying.
Amanda: said…
Awwww, what a sweet honey!!! One day at a time... this too shall pass :)
Carielle said…
You have a strong little girl and she has a strong family! Still praying for you all!
Colleen said…
Hang in there. I think you taking breaks is a good and healthy task but I'm sure it is hard being so separated from everyone in the family. Lots of love and support headed your way.

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