Another set back

There has been a lot going on in the last 4 days since I have written, and while I have wanted to share every moment of it I also needed to digest it.  I am utterly exhausted in a way that I have never felt before.  I long for the days and nights of when she was a newborn and you have that type of exhaustion.  That type seemed so much more simple than what I feel right now.

So Wednesday we were told we would be getting the new EVD (external drain) placed on Thursday at 7:30 am; I was okay with that, because that meant that the following Thursday we would have it internalized and then maybe up to a week after that, so still 2 more weeks.  Wednesday afternoon sometime, they put in a central line into her little chest.  It is an IV that goes into the chest near the right shoulder and then has a catheter that runs over to her heart.  It allows them the ability to draw blood easier (without more pokes) as well as continue with the vancomycin (the antibiotic she is on).  This antibiotic is quite harsh and can burn through her veins, but it is a broad med that is needed until we know what is going on.  This was not an easy thing to digest.  When we came back and saw it, I cried for my little Willow.

Thursday she had her surgery for her new EVD in the morning and then slept all day!  She did not wake up until her siblings showed up to visit her. LOL  Once she did wake up though it was so cute to see her happy to see her brothers and sister.  Thursday was just a day of recovery for her, it took her all day to have the morphine wear off and begin to feel normal.

Friday came and it started with a surprise.  A visit from a doctor from infectious diseases... What a way to wake up!  Come to find out she did get some sort of infection/bacteria while her head was leaking (which was why we had started her on the vancomycin).  So the bad news from yesterday is that she needs to be 10 days cleared of an infection before Dr. Foody will discuss when surgery will be.  That 10 days will end on Friday June 3.  So, I miss my opportunity to have the surgery on Thursday... Now I have no idea how much longer we will be here.  I have not had the chance to talk to him to see when after June 3 he will do the surgery.  Will he be nice and do it on Saturday so that we don't risk any other infections, or will we still have to wait until the following Thursday when he does peds. surgeries?? All of these horrible questions go unanswered until we see him next.

All the while I sit and really wonder why she has to go through all of this?  Why does my little Willow not only have to be born with Hydrocephalus, but be allergic to the shunt that is supposed to be helping her? That is such a rare thing to occur and yet it is with her.  Why when we are trying to get her to feel better, does she have to develop an infection and stay longer?  Why? Why? Why?

Comments

Jodi said…
Hugs, hugs, hugs! Praying for her still! I'll be by to see you tomorrow, late in the afternoon, I'll call ya first!

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