Sunday, August 29, 2010

But I would not feel so all alone...

Everybody must get stoned.
--Bob Dylan, "Rainy Day Women #12 and 35"

So apparently in the past couple weeks they have turned our sweet, innocent Jay into a junkie. A couple weeks of constant infusions of morphine and midazolam will do that. Midazolam (Versed) is Valium's big brother (and known as "Dazzle" if you want to get some on a back alley somewhere). To keep him comfortable, he got pretty high doses of both while he was on bypass and the vent. Now that he doesn't need them any more, they are trying to slowly decrease them without causing withdrawal symptoms. The shaking, sweating, and anxiety of withdrawal is not what his heart needs right now. Vomiting and diarrhea are also symptoms of withdrawal, so it is a little hard to know if last night's problems were due withdrawal or something else. We're hoping they can continue decreasing both of these because we can't leave until he's kicked his habit.

Otherwise, today was a rather sleepy day. After playing this morning and working with the physical therapist, he napped for an hour or two. On the PT front, he is doing quite well with his upper body and trunk strength and balance. His skinny little legs have gotten skinnier, and are still too weak to stand. He tried harder today than yesterday, and if he keeps it up, Jay'll be back on his feet in a couple more days.

The afternoon agenda included another wagon ride and chocolate pudding. Oh, and chocolate ice cream, courtesy of our fave Dr. BJ. That soft spot in her heart for our lil' guy seemed to get bigger when he blew her a kiss. ;-)

Jay hasn't had anymore vomiting or poop, so tonight he's getting prune juice through his NG tube. He is continuing to eat pureed fruit too. He is especially excited about eating since he got a really cool front end loader spoon ( from some friends in the pharmacy at the vet school. Pureed food, prune juice, and coumadin--sounds like a 72 year old instead of a 2 year old!


Anonymous said...

I am glad that I read the posts together. I am glad some of Jay's GI problems are getting better, and I am glad things overall are looking up. He must love the little red wagon. Morphine is so consitpating, I pray that as it is reduced his system will return to normal. I know there is still a lot of race to run, but you are really over the tough part. I am so glad that things are looking up.

Bob & Dee
P.S. If you have any needs then just let us know. We have all been trying to think of ways we can help you.

Anonymous said...

Poor little fellow but Praise God for the continued improvement. As a society we have gotten so used to everything happening the minute we want it (cell phones, drive through eateries) that it is very hard for us to be patient. Rejoice in each blessing - the love and prayers of those known and unknown, for front end loader spoons; for little legs starting to work again; for continued good health for the both of you and the list goes on. Thank you for your updates - so many of us are taking the journey with you. Love, Dora

Archie Gupton said...

Keep them Hopping Jay the Tool Boy. You must rest, and let mom and dad do so also....but alert and lively...that is the target...Hi to LaLa.
p.s.Hay Jay, I am nearer to 72 than you, and it doesn't sound promising. Lets keep with the tools, okay Jay?

Stacy said...

So glad he is seeing improvement!

Anonymous said...

Step by step Jay's getting there, and I'm ever so grateful.

May you celebrate each and every step in the context of where Jay was two weeks ago and where he is now.

May you continue to acknowledge your concerns and, while doing so, find enough encouragement not dwell on them.

We love you and are with you in prayer every step of the way.

Lynn and Scott, Luke, Sarah, Philip

Anonymous said...

It's so encouraging to hear about the progress Jay is making, and to see that spark of a 2 year old in the midst of it all. :) Sounds like it really is a roller coaster of ups and downs, for everyone. Our thoughts and prayers are still with you, each step of the way. Hang in there and keep taking care of each other.

Kimberly Taylor and family

Amy said...

That little Jay sure is a trooper! Continued prayers for him and ya'll. An old friend used to say people "rise to the occasion". You guys have certianly done that!! Keep up the good spirits!