As I'm sure it is painfully obvious from my last post, I'm not in such a good place right now. Neither is Kirk, but he is able to hold things together so much better than me. I've definitely felt on edge for the last few days, but today was an over the edge, go splat, and then have a boulder fall on you sort of day.
One thing that made it worse was an experiment we did at 5, taking off Jaisal's pressurized mask, replacing it with another breathing support measure, and seeing how he tolerated the change. It did not go well. He was taking labored breaths and grunting, both of which magnified his frail frame and signified respiratory distress. There went our walks, our ability to sit him up and play, etc.
Well at 8:30, we were going through another breathing treatment and noticed some skin that was showing early signs of breakdown due to the mask. The only cure? A break from the mask. The only way I could do that was to use the same respiratory support measures from earlier.
We got Jaisal set up, I picked up his newly free self, hugged and kissed him for at least 2 minutes straight, and then sat in a chair cradling him. For the next half hour he proceeded to breathe better than he has during this entire hospitalization. I have no idea why or if it is a fluke, but it was amazing. I woke Kirk up from a deep slumber to witness it and called in all the nurses in the vicinity to do the same.
Then as Jaisal was falling asleep he kept reaching for my hand and held my finger until his eyes closed. We'd repeat this game every time he startled himself awake. (Have I mentioned that Jaisal is going through morphine withdrawal and is now on methadone to ease his symptoms? The startle response is one of the signs of withdrawal.) As you can imagine, I was grinning from ear to ear.
I have no idea why this amazing little guy, who is going through so much, felt the need to pick me up, but in the matter of an hour or so, he restored me in a way that I didn't think was possible right now. This kid is truly my hero (with Scott a close second).
4 comments:
Gotta love that through all of this mess Jaisal knows just when you need a little something to keep you going. Keep hanging in there...you've got one amazing little boy. After all of this, I'm never going to complain of being tired ever again:)
Jaisal, you and Kirk are phenomenal!! Love Ya, Scott's Sis :)
Thinking & praying for all of you!! Isn't it funny how kids can sense when you need that extra special love that only they can give? You guys are all doing AMAZING, hang in there it will get better. We had lots of bumps in the road post transplant too but eventually things smoothed out & are great now!! It's so easy to blame yourself, we did the same thing. It's nothing you guys did, this is just the journey set for Jaisal. It will get better in time & you will all be so much stronger because of all you've gone through!! We will keep you al in our prayers for things to get better soon!!
The Glaser Family,
Cory, Lisa Kylee, & Skylar
www.caringbridge.org/visit/kyleeglaser
(cjglke on Liver Families)
just bawled through that whole post... the picture of sweet Jaisal reaching for your hand and falling asleep is priceless... so overjoyed you got to hold him & that he was breathing so wonderfully -- that is the best medicine ever for everyone involved!! you all are amazing and we are praying...
Post a Comment