Willow's Wishes

So, here it is... for all of you who do not as of yet, last year I signed on with the Pediatric Hydrocephalus Foundation as the state of Michigan's co-director.  For my closest friends, this should not surprise you that I have taken on an endeavor to spread awareness of the condition that Willow has. Up to this point, I have not done much except for talk. Now talking has done a lot in a different sort of way when it comes to awareness, I can say that a lot of my friends who knew nothing before know a lot and that is something.  :)  But here is the crazy idea, pretty soon on my facebook page and on the Michigan PHF page you will see a fundraiser called 'have a heart for hydrocephalus'.  It is our national campaign that we do to raise funds for research.  Well, while standing in the shower half asleep, and thinking of a local radio station's show recently and what they have done in the past for special needs children, I thought of this idea that has me so excit...

A much welcomed end too!  We really are truly blessed by how much the nurses here love our little Willow and I am extremely thankful for the great care she receives to (when under Dr. Foody's care since he knows her so well). Anyway, surgery yesterday took longer than normal but Jon and I were keeping ourselves busy with the iPad and books to read so we didn't notice too much how long it was taking.  Her neurosurgeon came out and said there were 'no known complications', so that is good.  We put her back to a 1.5 fixed rate shunt so that will be good.  The other thing he said after surgery is that we really need to get her tubes placed immediately.  And if we could do it on Saturday before discharge even better!! LOL  Yeah like that will happen, but I did call her ENT and the soonest we can get in is the 30th of this month... so two more weeks that should not be too bad I would think. She seems to be in great spirits this morning, so it looks ...

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, a...

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 se...

Well, Willow and I spent it in the hospital learning a few new words/terms, seeing old nursing friends and getting a visit from a very special couple I hold dear to my heart.  How did the rest of my family spend the day? That is a good question! LOL   I am not sure, I do know they slept in a bit, they did some light cleaning, they came to visit us and I do believe there was some special ice cream treat worked in there somewhere!  What a day! So, Willow is now on day 2 of her recent trip to the hospital, and really I do not know much after this day.  I do know that the CSF culture from the shunt tap has still come back negative for infection.  That is good one would think, but now I have doubts running in my head.  A doctor from the neurosurgery team came in almost disappointed that the culture was clear.  She said that they had planned on doing surgery today! They really thought it was a shunt infection... not only did she say that, but then later in...