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.

7 comments:

Dawson said...

Hey there. Just wanted you to know we have been doing a lot of readin, but just not a lot of commenting. The thing is, well, I guess im not sure just what to say. Your life right now goes way beyond what I can possibly comprehend. It stretches much further than Infantile Spasms and encompasses a very broad spectrum of things that I have never myself dealt with or ever hope to deal with. I do know this though... Over the past year our family has just fallen head over heels for Zoey and although I might not know what to say, I do know that we have been thinking about you guys, and I do know that Zoey is an amazing little girl. So we will do what we can here.. and thats to pray. We're praying for healing in her body, and were praying for peace within yourself and your amazing family. Pleas let us know if we can do anything else for you guys.

Anonymous said...

A lunatic Mom in 411B -- THANK GOD. And..... WE LOVE HER. Prayers and healing energy to Zoey girl and kind thoughts and strength and faith to you and Mark, the boys and the girls. Stay crazy and fierce. Grrrrr.
xo Christi Harman

Reagan Leigh said...

Heather,
So glad to hear that things are on the rise and going well! I would love for you to be able to go home and have everyone together again (at least until round 2). I'm so sorry I couldn't talk yesterday. I felt so bad about having to let you go...I tried my best to get back in touch with you, but I know you're busy. I hope you forgive me! Please know that you and Zoey are in my constant thoughts and prayers!!
Love,
Tera

Carey said...

Great update. That's awesome!!! ANC 50!!! What's the going home rules there? I've heard some can't go home till 500, others don't even stay for count recovery! We got to leave when her counts showed a significant rise two days in a row. They would go up and down for a bit before really going up.

AND you have to share a room!? That's crazy, I guess we were super spoiled!!! I'm so sorry, I can't even imagine. There were days I didn't get dressed until 10am, just closed the curtain in front of the door and we did our thing ... alone. The nurses were used to it. At least I would put on a bra!

Can't wait to hear about your trip home!

Cheri said...

Ohhhhh....the lunatic mom. Yep been there too! :) So glad to hear things are on the up swing. We are continuing to pray for Zoey, in fact little Luke and I sat on the couch the other day and talked about the people in our lives we needed to pray for...he told me we should write them down, so we did and Zoey was up at the top of the list. Then, I held his little hand and the two of us prayed for Zoey together. He likes for me to read him her "updates" from your blog.

I loved Christi's comment so I end by dittoing her comment....Grrrr! Keep up your motherly fight!!

Donna said...

You don't know me but I check in on your daughter daily. She looks and sounds like an absolute love and I want to reach through my computer and hug her. I will pray daily that God sees your precious daughter through this smoothly. Thank you for sharing her story and life. She has touched so many and I can see why...

Kele said...

Okay, yeah, this must of been the 'lunatic mom in room 411' whose message I didn't get till be next day!! Arg, I'm sure hatin' that, maybe I could of talked ya down, God knows you did it for me enough times!!