Tuesday, May 21, 2013


We've finally got the news we've been waiting for....WE ARE GOING HOME!!!!!

We made the final decision this morning during rounds that we're ready
to break free and get the hell out of the hospital. The past few days
(Friday through Sunday) were really rough; hence the lack of posts,
but I truly believe that once we get out of the hospital environment,
things will settle down and we can fall back into a semi-normal
routine. Things were really stressful over the weekend because Stephen
was still having these eposiodes of unconsolable tantrums that were
lasting hours. And it became this guessing game of what was causing
the episodes. The doctors, the nurses, and Bill and I were only able
to guess whether or not they were caused by pain, drug interactions,
constipation, or anxiety. I started tracking them to see if there was
some sort of pattern, but it didn't really help that much. It just
got exhausting not bein able to do anything for Stephen. The only
thing we could do during these episodes was to either put him in the
crib and let him thrash around or put him on a mat on the floor. And
then we would spend all day and night speculating and talking about it
in top of not really getting any sleep. It's been a rough road to say
the least.

I think it was on Sunday evening or Monday morning that I finally said
to stop the IV pain medication, Nubain, and see what would happen. We
couldn't go home on nubain anyway, so if we wanted a shot at getting
out of the hospital, we'd have to ween him off that one anyway. And
then we started weening the oxycodone yesterday as well. So now we're
just down to tylenol. But honestly, I think he's really just having
issues with the steroids. In the past, he's had some trouble with
steriods and other drugs, so I think it's just going to be a long
adjustment to taking predisone every day. Eventually the dose will
get lowered, week by week, to where he's on a very low dose every
other day, but it will take a while to get there. So in the meantime,
we're just going to have a very crabby toddler every morning (he gets
the prednisone once a day in the morning at 8am).

We've also gotten all of his medications now and had some training
with the pharmacist on how and when to give them all. We're obviously
used to adminstering lots of medications, but now his medications have
to be given at pretty exact times, some on an empty stomach and they
have to be coincided with his twice a week lab work. So it's going to
take a little time to get a routine down at home and plan ahead when
we want to go places (not only taking his feeds, but also
medications). But I like the challenge of coming up with a new
routine and a new way to organize everything and figuring out how best
to make it work for us. It's the OCD in me.

I can't sugar coat this transplant journey; it's been really freakin'
hard. Way harder than I ever imagined it could be. I think you tend
to latch on to the good stories and think about other people's really
bad stories, but you don't really tend to let those middle of the road
stories stick in your head. Again, coming back to that whole managing
expectations thing. At times throughout the past 13 days, I've
definitely thought that maybe we made the wrong decision about doing
the transplant now. It's been so incredibly hard watching Stephen
struggle through his recovery when just a few days beforehand he was
such a happy, active, fun toddler. There were a whole lot of tears
and some moments of pure frustration and anger, but a good amount of
joy too and so much to look forward to for Stephen's future and for
our future as a family. Plus we're heading home with one kick add
kidney that making pee like crazy!!!

But I must say that one of the most overwhelming parts of this has
been the outpouring of love and support from family, friends and even
complete strangers. We can't thank everyone enough for all the
prayers, thoughts, messages, texts, emails, blog comments, cards, and
gifts. They've all meant more to us than you could ever know and have
been an amazing distraction for all three of us. One day Stephen will
get to read all of the notes and see all of the pictures of the hands
and messages and I can only imagine how he'll feel knowing that so
many people really loved and cared about him. I know as his Mom, it
makes me incredibly proud and honored to have such an amazing little
Superman as my son. Thank you all!!!!!!!! xoxo


    So happy for you ....
    the Raines

  2. Getting off the horrible pain meds, and going home...............it's the best news. Lindsey, you and Bill are my hero's. Be good to yourselves and each other, as time allows.

  3. We are all so excited that you are getting out of the hospital !!!!!!! What a big step !! Thank God ! Sending lots of hugs !! Carrie Tom Tommy CC and Quentin

  4. Dear Lindsey,
    This is absolutely THE BEST news!! We just know that Stephen will recover much better in a home environment with his Mommy by his side.
    Aunt LuAnn & Uncle Dick

  5. Wooohooo. This is great news. I hope you are getting settled in to your apartment and enjoying the new scenery. Looking forward to seeing you again and meeting Superman!!! Great job to all of you for your strength and patience during this time :)