What a week for the new year...

Well, this week has brought about loads of craziness.  I have sat down a few times this week determined to up date my family and friends and let everyone know what is going on with Willow but I could not really wrap my own head around the many possibilities that were taking place. At one point this week Mama Bear almost made an appearance as I was beginning to feel completely defeated in all of this.  Then I spoke to a couple of friends and began to feel completely reassured in my thoughts and feelings! :)   Then came the neurosurgeon, then and then and then....

So, now I sit on Friday morning trying to process this roller coaster of a hospital stay.  I will do my best to fill you in and break it all down but I do believe there are still a few questions left unanswered as of 7:40 this morning (don't worry doctors will be rounding soon).

Monday evening Willow had a spell of starring off into space, it is called an absence seizure, (http://www.mayoclinic.com/health/petit-mal-seizure/DS00216) and can last up to about 30 seconds in all I guess and looks just like she is starring off at something, but she will not respond to you if you call her name or touch her nose.  They ran an EEG on her Tuesday morning, and did not catch it on the test, but one of the ped's doctors who came in to look at her Tuesday morning saw her do it that time (yup a second one), and confirmed that she was now having seizure activity.  The first thing neurology looked into after the EEG came back fine was her temp. Only she had been fever free since Monday at noon! Yeah (she had to be on the mend right?)  So the neurologist believed the seizure activity was due to an increase in cranial pressure... Only I was told the CT scan was good from Saturday. Hmmmmmm.

Tuesday all she is does is sleep. And I mean that seriously.  I was able to get up to wake up when the food tray was delivered, she would seem to even perk up and appear like hey I can do this, I can get better.  She would sit in the high chair, eat her food maybe even play for a few minutes and then CRASH! She would sleep for another 4-5 hour stretch, waking when food was delivered or there was a point on Wednesday (as this carried over into Wednesday) of sleeping past breakfast and into lunch being delivered before finally waking up. :(   Like I said mama bear was on the rise on Tuesday because the doctors were saying that it was related to the tummy bug and if she stays fever free that is a good sign etc.  Leading me to believe there was a possibility of discharge of Wednesday, only I knew something was not right!

Wednesday her neurosurgeon finally got back from vacation and was in the hospital to see her.  Before I could launch into my speech of what I thought was going on, or how she is behaving, he sees her laying in the bed lathargic and says we will order an MRI and a Nuc. Med study, they will tap the shunt and we will go from there... There is a possibility of surgery in the next 3 days!  So it was another day of waiting and seeing my poor baby girl just lay there and it was so horrible.

Thursday rolls around and they take her down to the MRI around 9 am.  We get her sedated for it around 9:45 and by 10 she is back there doing her thing and I am out finding breakfast.  By 11:45 we are back in her room on the 7th floor and the nurse and I are slightly confused. The plan was to go from the MRI straight to the nuc. med study and then back up to the room... So she pages Dr. Foody the neurosurgeon.  He is not a happy camper!! So by the time I have a chance to go to the cafeteria to grab lunch and make it back to the room and take one bite, he is in our room saying her vents are larger and she is going into surgery!! What?!!   I knew we were to be prepared for the possibility and really I knew there was something wrong, but just like that? No talking about what is really going on what his thought process is as to what happened just GO?!

So surgery took place yesterday all went well according to the NS, and he has her set up on an external drain.  The doctors here on the ICU floor are saying that this all shows signs of a shunt malfunction not an infection so why did he externalize and not put a new shunt in?? So we are waiting to see Dr. Foody to find out what the plan is for her. How long will she stay on the drain, what type of shunt will they place her with next (he is talking of possibly using a programmable shunt again meaning no magnets in our house), and when do we get to go home!! Once home, we need to see if we need to set up an appt. with the neurologist again since she did have two episodes of seizures (my guess is no since the EEG came back ok).  And just get back to the normal routine of work, school and life!!

Please keep her in your prayers as she could really use them right now.   Thank you so much.

Comments

Colleen said…
You are all in my heart and soul right now!!!!

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