Monday, March 4, 2013

As The Journey Ends - Brian

As Ian, Marci, Becca and myself prepare ourselves for the end of this long, emotional, confusing, aggravating and arduous journey, I cant help but think back to when this whole thing began.  January 5, 2013, yes over nine weeks ago, Marci and I brought Ian in to the ER at Johns Hopkins hospital because we couldnt clear the secretions out of his system.  So better to be safe than sorry.  It turned out the doctors wanted to keep him overnight for observation.  Well we all know where that got us.....a nice long stay in the PICU.  Followed by rehabilitation at Mt Washington Pediatric hospital. 

Looking back over all these weeks I cant believe all that Ian has fought through.  As stated in previous posts, he basically went to hell and came back.  However, it seems that when he came back he came back stronger and feistier than ever.  But most of all, he gave us more hope to know that eventually we would be bringing him home.  Since his trache placement, Ian has been his bright, shiny and laughable self.  Yes his speech is still soft if not softer but thats ok.  I'll gladly give that up over anything more any day and twice on Sunday. 

So here I currently sit with Ian at Mt Washington, in what is to be hopefully our last week.  Thats right everyone, we have a tentative discharge date of March 12.  However anything can change with that date but we are hoping nothing will.  As the days go by over the next week though it is crunch time for Marci, myself and all the other care coordinators to get everything set up.  We are going to have a very busy week.  Starting tomorrow Marci and I will be meeting with Pharmequip (Johns Hopkins DME company) to conduct a home assessment for all the necessary equipment that we will be bringing in to the home.  Also, begins the training we will need on how to work Ian's ventilator..  We have about three days, 2 hours each day, of vent training.  Then on Friday the chaos begins.  The arrival of all of Ian's medical equipment, peripheral supplies and such.  I have moved Ian's bed out of his room because he will  now be using a hospital bed, plus his closet is in need of a serious overhaul because we need a place to store everything else.  No matter, we will certainly make it fit.

Now on to the heart of the post.  I am sure I can speak for Marci as well here as I say a HUGE GINORMOUS thank you to everyone out there that has, in some way, provided support to not only Marci and I but to Ian and definitely Becca as well.  To our families, no amount of thanks, hugs and kisses could ever express our gratitude for all that you have done.  From the countless hours spent just sitting at the hospitals with us, to texting and checking in with us at least every other day.  Without your support I am not really sure if Marci and I could have handled this alone.  This definitely not only shows us but should show everyone what family is all about.  True we may not stay in touch as often or see each other as much as we would want but when push comes to shove family is what it is all about. 

Now to all our are all as close to family as one can get.  Through these trying times, day in and day out, you all have been there to support us and lift us up from the darkest depths.  When things were at their bleakest, our friends rallied around us and did amazing things.  Not only were you all there emotionally for us but they way you came together to get things for us and for Ian is just amazing.  I am in total awe of everyone.  Without asking, without hinting and without knowledge at times, our friends pulled off some wonderful feats.  There are certain individuals out there who deserve my complete and total heartfelt thank you.  You organized things such as an online fundraiser and a fundraiser at a restaurant just to help us financially.  I have always known such people existed in this world but I never imagined I would be the reipient of such generosity.  But then again, I never expected to find myself in the situation we are in.  But even so, I cant say enough about everyone who gave, sent well wishes and so on to really express how much we care about all of you.

I could go on and on about everything that was done for us over the last 9+ weeks but then I would eventually just repeat myself and ramble on and on.  There is so much to say that I really do not even know how to say it.  I wish we could personally thank each and every individual that helped us during this journey but that would take way too long.  Just know that Marci and I will never forget how you all helped us through this rough and difficult ordeal when things were at the worst to being tentatively only a week away from bringing Ian, our son and my personal hero, home finally.

All we can do now is prepare for what is to come or as we like to call it our "new normal."  Thanks again to everyone and we love you all. 

1 comment:

Anonymous said...

Brenda Bforsma Hanson such awesome news!! How exciting to hear the news

Tamara Jayne Flax Wonderful news! I'm happy to hear that there is a tentative date of going home!!

Danielle Houseal Great! Let us know if you need help getting things organized in the house. Looking forward to Ian coming home - I'll have to bring Cooper over to say hi.

Laurie Fox Schimmel This news made my day!!!!!!

Carrie Levin Weitzman I am smiling from ear to ear for all of you! I am a great organizer if you need any help at home. Hugs, hugs, hugs!

Katie Cullen McGoey Best of luck in your transition to 'new normal'!! He's quite a fighter!! Much love and strength to you as you get all set up for him!