Thursday, March 22, 2012

We're Free. . .

Some of our stuff.
I realize, whole heartedly, a title like that is one of celebration, and it most certainly is.  I was all packed and ready to go the night before we were to be discharged.  I had to go out and buy a new suitcase to fit all of the things we had to move with, that hadn't come with us. . . had made Tray so excited to move he helped me pull of his sheets to ready his bed for the next patient.
Trayvon with his Transplant coordinator (inpatient) Lisa.
But, moving always comes with an overwhelming sense of sadness, fear and trepidation.  Nurses are responsible for your child.  Doctors see you child every day.  Meds are prepared and checked for you.  Vitals are checked numerous times a day.  Your child is under the watchful eye of many instead of one.  I'm the one now.  I am responsible for all that was managed before by many.  And the people you talk to daily, befriend, are no longer there, you're thrust into the "new kid on the block scenerio" all over again. 

As we sat downstairs and waited for our "ride", having no idea what would show up.  Tray and I shared a large pretzel from the stand outside the hospital doors.  Before his transplant, that salty treat from Heaven was completely banned.  He became bored waiting for our 1:00 ride around 1:40 and states that we should rent a limo. . . oh baby, if only I could, if only I could.  Finally, our "well known for being on time company" arrives with a 20 passenger, wheelchair accommodating, bus!  I thought this is a bit of overkill, but after loading our many, many items, realized, this was the perfect ride for us. 

As we drove through the city going from the West side to the East side and then downtown, we watched all the people walking their dogs, feeling the wind on their face and enjoying life.  I couldn't help but think, this is all Tray is going to have to do from now on too. . . that and take a boat load of meds and see the doctor umpteen hundred times, take his temp daily and never, ever eat star fruit, pomegranite or grapefruit, and have cardiac biopsies hundreds of times in his life time. . . but, other than that, he can live a perfectly normal life!!  How awesome is that.  No oxygen, no IV's, no restrictions on running. 

We arrived in front of the Ronald McDonald House.  It's a House designed specifically for children with Cancer.  We are odd men out here.  After signing 3 forms that I am not bringing the black plauge, or the measels, mumps or any other itchy contagious disease I get my room key.  I manage to stack our stuff in such a way that it manages to all fit on one of the bellhop carts at the front of the building.  It's not a pretty tower of crud, but it's OUR tower of crud.  I carry the new suitcase which is, for whatever reason, heavily leaning to the right.  We get to our door, the key works, I open the door and I pause. . . it's so small.  There is no refrigerator.   I know that doesn't sound like a big thing.  But having food close at hand in the hospital was one of the ways we got Tray to eat more and more.  Now, we had to put all of our belongs in the kitchen.  In a numbered bucket in the fridge and freezer and in a cabinet, numbered for our room.  4 flights down. 
Our new home away from home.

Tray however, saw the room, the building, the large display of activities posted in the lobby and was extatic!  And rightly so.  As soon as he unloaded his coat and I drilled him on our room number, he left for the next 2 hours to explore all that this great place has to offer.  I, instead, sat down and cried.  I was looking at bags and bags of stuff that needed to be unpacked, food that had to go to the new kitchen and the 18 new bottles of meds that were all my responsibility now.  I know that when I get the room in order, all will be well, but that seems overwhelming at times. 

After 2 hours, Tray returns happily to tell me all about his great finds.  He also finds the room done.  We go together to get some hand soap for the bathroom, some snack foods and a slice of pizza since we had only had a pretzel for lunch.  We eat in the kitchen, unload our new goodies and then he's gone yet again. 

Our new medication regime.
Seeing him so active and happy has turned it all around.  I headed back, put our new lavender soap in the sink and get out the new med bins and begin filling the first weeks.

This week, Tray and I return on Friday for his first outpatient clinic visit.  He will have labs with a regular poke, as he no longer has his PICC line.  We will find out the day of his next cardiac cath for next week.  We will also be able to walk out of the building and return to our new home. . . YEAH!!!


  1. Renee - I keep you all in my thoughts and prayers daily. So excited for you to begin this new step as scary as it is. Girl - I'm telling you - you make me want to be a better human!! I love these updates and I'm sending big hugs to you and Tray from SC!!

  2. Renee, I have enjoyed reading your posts and seeing Tray's progress. You are amazing! You are all in our prayers.