Home Sweet Home
1-28-07
I apologize for not posting this entry sooner. We've been
busy. The good kind of busy, because our Jaymun is finally home!!
We were discharged Wednesday afternoon, after plenty of medical care instructions and
teaching. It's a bit daunting to realize that we are now solely responsible for
all his daily needs. Take a look at what I like to call the
Bag-O'-Fun--and
these are just his oral meds, given twice a day. He also has two IV meds
we hook up to a pump and give to him through his central line every afternoon.
And every evening, we need to figure out how much formula he drank orally
throughout the day and then mix up the appropriate amount of leftover calories
he needs for his total intake--this batch goes through his NG tube while he's
sleeping at night. Add all this to the three weekly clinic visits at the
hospital we need to drive to and it makes for a very hectic schedule!
However, we would all be quick to add that we would much
rather fill the role of full time nurses at home than be living full time at
the hospital. When we left, my heart felt so heavy with all the goodbyes
to those that took care of our baby. Imagine--the HOT unit staff actually
watched him grow up from birth to six months! They became our family of sorts
when his cancer required him to live in isolation from others. I lived
vicariously through them...they shared stories of their families and children
with me, what they did on the weekends, even gave me weather reports (that's
how little I got out into the world!). They always commented on Jaymun's
little achievements and rejoiced over his
recoveries when he bounced back after being sick from chemo or various
infections.
Wednesday morning started off with this
bit of cheer
on our message board. I can't think of a better sendoff than to have
these two
as Jaymun's nurses on his last day. They were always such rays
of sunshine to us-- always smiling, always cheerful, always helpful no matter
what the day brought. I will miss them more than they know (I'm pretty sure Jaymun
would agree)! Nurse Bonnie and Jaymun
had a little
heartfelt "conversation"
before he left. I kept thinking someone or something was going to prevent us from actually leaving, but before
we knew it, Jaymun was
all bundled up
and ready to go. What a mixture of feelings--both tears of joy and tears of sadness.
Somehow, I think our nurses understand completely....
To
This One and
This One:
I think I've already said enough to both of you. You can't even imagine
the depth of our appreciation to you. When I think of the words
"love" and "devotion", I can't help but bring you both to
mind. I get choked up just thinking of not being able to see you regularly.
To
This One:
I will be waiting to hear how the boards go for you...the HOT unit is sooo lucky to have you on their staff! You have been
trained by the best, so I just know you're going to make an amazing nurse!
To
This One:
Still, after six and a half months, you are one of the sweetest guys I know! Anyone
who can wake me up a dozen times at night with his Waving Flashlights all
around the room and still remain in my good graces by morning has to be a
keeper! Good luck with your wedding. You are going to be a fantastic daddy
someday....
To Kyla: My one regret is that we never got a photo of you
with Jaymun! (What a horrible oversight!) Thank you
so much for the cute dinosaur and card. You were so nice to think of us before
we left. We really appreciated having you as our nurse the past few months. It
was nice to compare notes with you between Jaymun and James.
To
This One: Since we weren't graced with your presence after the first round of chemo, I had to be
content with running into you in the hallways. I'm so glad we get to see more
of you in clinic from now on!
Words cannot say how joyous it is to be all
together as a family again. Every night we go to sleep in one house and wake up
in the morning as a family, the way it was meant to be. Jaymun
is beside himself with happiness--everywhere he looks, there is something new
and colorful to see. He has no shortage of entertainment or people to snuggle
him. We are constantly smiling to hear his shrieks of delight. The younger boys
keep asking if he gets to stay or if he has to go back to the hospital. They
scurry into our bedroom every morning just to make sure their baby brother is
actually still here. It is the most satisfying feeling ever just to have them
spring onto the bed and hug Jaymun while he is still
yawning from sleepiness. The chaos has of course multiplied with having
everyone all together again, but it feels complete in the most
wonderful way imagineable. Chaos can indeed be bliss, it just depends on your perspective.
Jaymun hasn't officially finished
his treatment yet. There are still months of checkups ahead of us. More tests.
More procedures. Our transplant nurse practitioner told us
last week that 75% of transplant patients are readmitted for infections or
other problems. We haven't gotten the "green light" to take
Jaymun out in public yet. His immune system is still
unstable, which is highly worrisome during this cold and flu season. He's on
steroids and pain medication and a host of other meds that will need to be
slowly weaned over the coming months. His fluid intake is slowly returning, but
since his lungs took such a hard hit we need to be careful not to overdo things
too fast. These are all parts of the healing process. We accept that and
realize there are still bumps in the road ahead. But to have him home amongst
those that love him most is reward enough for now. We've got a lot of catching
up to do and we intend to take advantage of the gift we've been given at this
stage in Jaymun's recovery.
I found the quote below today--it seemed to really hit home,
especially with our present circumstances. Maybe our story has prompted you to
reevaluate your own perspective on appreciating your present blessings,
whether they be good health, abundant material
possessions, or the love of a family. No matter your situation, it's my prayer
that all those reading take the following bit of wisdom to heart:
"When
you arise in the morning, think of what a precious privilege it is to be alive
--to breathe, to think, to enjoy, to love." -Marcus
Aurelius
