Wednesday, November 19, 2008
"Faith makes things possible .... not easy."~ Author Unknown
Ok, I'm better now.... well at least my spirits are better.A huge thank you to everyone, for all your amazing words of support and encouragement,emails and calls.Even during those moments, when I feel so alone,I know I am not.My sweet Taylor,who had every right to stay really ticked off at me,didn't and in fact,made me an amazing cd to listen to and printed out the lyrics to a song by Casting Crowns.She is just a child herself still,trying to find her way through this stuff,just as we all are and I am so proud of her.Anyway,new day and new stuff to report.First,Zoey is doing great.We have finally gotten a handle on her g-tube deal.At least she is not squirming in pain every time we touch it.Her white count has come up to 1.17 and her ANC is 50.So it looks like things are on the rise,which is a good thing.But with it,comes the the fact that her body will "figure out" she has some infection at her g-tube site so by all appearances the site will most likely look worse before it gets better.She will be well covered as far as infection goes,with a heavy duty antibiotic on board and we can be at ease that she shouldn't run into trouble in that area .The great thing is,that throughout this g-tube fiasco,she has not ever had a fever.Which is huge.Her disposition is nothing short of amazing.She continues to wow us all.Our days are filled mainly with just hanging out,her and I.Labs are only drawn early in the morning and besides being hooked up for her antibiotic,we are pretty,well .... bored.We haven't left our room in 3 weeks.Even with a mask,the germs beyond this room,scare the heck out of me.So until her numbers are on a really good rise ... we stay put.There have been so many things,too many in fact,that have been worthy of blogging but for the sake of time I will sum things up a bit.For the most part,all the nurses and doctors are fabulous.I did have to tell the charge nurse that one nurse in particular, was never, not ever to come near my child again.I did have to tell one very cocky and full of himself resident that he needed a major attitude adjustment and it wasn't quite in those laid back terms.I did have to get patient advocacy involved on the air conditioning situation and on another huge issue.Mainly,nobody had me sign a consent form for her very first bone marrow biopsy and they basically took her without talking to me.Far from happy and I made that known.We are not here to make friends and it is our number one priority and responsibility to advocate on behalf of Zoey.With that said,I know already that there are a few nurses that I will and have become close to and will more than likely be in our lives for a long time to come.And unless I am completely missing the mark here,I think they feel the same way.Even with the hushed tones of ... "Watch out for the lunatic mom in 411".Zoey has shaken things up a bit here and there.Last night in fact she decided to get us all moving at 12am until 3 am, with some major portacath issues.Suffice it to say,our neighbor was probably not pleased with the goings on, on the B side of the room.Thankfully, all was taken care of.Much to the relief of the nurses and myself.Our neighbor is no longer darling little Madison.She was moved the other night,at 11pm!!Who does that to a sleeping mommy and child?And the kicker was that housekeeping came up to clean her side of the room at 2am.Much to Mark and Zoey's dismay.The courtesy factor here is much to be desired.Sick kids,stressed out parents and still people come in like gang busters with load voices and rude activity levels.They keep saying how the new hospital in a few years will be so much better.Well,just a heads up ..... we don't ever plan on seeing that building.MAYBE to come back and say hi but God willing,not ever as an inpatient.EVER.We miss Madison but she has popped by to say hi a few times.Keep them in your prayers today please, as she was having her port put in and was having her scan done.Tonight I head home.Not until late though.Mark has to put in a few hours of overtime and can't get here until probably nine or so.The boys are spending the day with our goods friends and they are sure to be spoiled.When all is said and done we will probably be doing a bit of deprogramming of those little guys.It was the same in the NICU days.Everyone took them places,bought them stuff and didn't want to discipline them, so we had to teach them that not every time someone walked in the door, were they taking you some where or bringing you something.Then again,I guess they deserve a little tender loving care as their little lives are just in turmoil and they too are doing the best they can.Well,Zoey is awake.I will once again close with our thanks and gratitude and the request that you keep those prayers coming.It may sometimes sound as if they aren't making a difference but trust me ...they are doing wonders.