The waiting game

Yeah that sums up the plan for this week. :(   Basically we are to keep her comfortable, how though is the tough part.  They have given us a high chair now so she can sit up in that and eat her meals and play in the chair.  The longest I have been able to keep her in it is about an hour and a half. Pretty good for staying in a chair in one place I think! Better than keeping her medicated all the time I suppose.  They allow me to hold her to nurse her and then short little snuggles.  Yet when Jon shows up yesterday he gets to keep her in his lap the whole 2-3 hours I was gone! What the heck?!  Oh well, at least he got some good snuggles.

Dr. Foody came in yesterday and now moved her surgery date to Friday. We are not sure why so I have a list of questions for him so that maybe we can get some real answers from him as to what he is thinking is happening to her.

She slept well last night.  I gave her Tylenol and Benedryl at around 8 or 9 last night, and she slept until around 1 or 2, woke up to nurse and then slept until morning when the nurses came to bother her again... So that is not so bad.  She really is a tiny peanut in really good spirits and is such a great trooper through all of this. We really have been truly blessed.  :)


Evening now, lol   I started the blog before work and then just got so busy with her, getting ready for work etc. that I never finished it.  But that is okay because while Jon made a great effort at trying to talk to Dr. Foody today, the doc decided to play a game of 'catch me if you can' and apparently our nurse ran after him twice today! LOL   We have such considerate nurses here.  :)

Well, tonight his associate came in to draw off some fluid, which made Willow extremely upset, but we got past that, and on to my list of questions.  First of course is why the change in surgery date?  Well, apparently there are proteins in her CSF, which are completely different from the white blood cells we usually watch for in an infection and even different from the eosinophils which show an allergic reaction.  Proteins tell the doctors that if they were to put a shunt it, the surgery is doomed to fail if the number is above 200.  If her number is low enough with this draw we can schedule the surgery for Friday, if the number is not, then surgery must wait, because we do not want a protein buildup to clog her shunt.  Now what would cause proteins in the CSF... yeah I kind of forgot to ask that... maybe some research is in order tonight!   I did get the confirmation that she does have eosinophils in her CSF as well, so now we are trying to explore the rare option that her body may always reject the shunt.  There is a chance that she can out grow this, but so far there are very few (I have located 2 cases) to where this has happened.  So with that said, the associate briefly looked at where I was reading one of these cases from said my sources were great and that I may be on to something with her.  She will talked to Dr. Foody about the possibility of this being the case and if so what can we do?? So far there is not much except numerous surgeries that we can expect in her future. :(  We will not be changing the setting on her shunt, it seems to work for her just well, she puts out double the fluid she used to, but it was explained to me that no matter how much she puts out, the shunt will not allow it drain until it has reached a certain pressure level. Right now this level is working for her and she is still her happy, smiling little self.  :)  

So, now we wait to see if the CSF shows a lower number of proteins.  If you would like to pray or send her well wishes, please let it be for a lower protein level so we may do surgery on Friday.

Thank you for all the kind thoughts thus far, the help from so many friends with dinners at home and here for me, laundry, offers to help with the children.  You all know who you are and it all means so very much to us.  Thank you again.


Jodi said…
Praying that the levels remain low or even non existent!!! Thinking of you both!!

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