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Home Sweet Home
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....
This One and
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:
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