Thursday, August 26, 2010

Rise and fall, turn the wheel...

Cause all life is,
Is really just a circle.
--Big Head Todd and the Monsters, "Circle"

With anything in the ICU, it can be two steps forward and one step back. Or three steps forward and two sideways hops. An occasional swing your partner do-si-do. All night dance party in CICU room 10! But we're having one of those side steps, going in circles kind of days.

Last night, Derek went back to the house for some MUCH needed rest. He has not slept in a big boy bed since Jay's surgery on 8/11. That's a lot of nights on a couch or sharing a tiny cot with me. I took hospital duty last night, and I now realize why that's usually Derek's job. He handles that kind of thing far better than I do.

Nothing horrible has happened, but we're not exactly making forward progress either. After coming off the vent, Jay went onto a high flow nasal cannula (which you could see in the picture posted yesterday). Last night, he seemed to be having a little trouble breathing, so they switched him to a CPAP machine, which helps to force a little more air into his lungs.

No one seems willing to commit to a particular diagnosis beyond "junky lungs." I swear, if they can't come up with some crazy technical sounding term, they just pull a random word out. (When Jay was having v-tach episodes, the doctor described his heart as "sparky." I couldn't make this stuff up.) Some think the junky lungs are from ventilator-associated pneumonia, some call it roving atelectasis (similar to a collapsed lung), some believe it to be bruising from the trauma of 90 minutes of chest compressions during CPR. Whatever the root cause, the treatments are the same - lots of pounding on his back to loosen the junk, forcing more air in to open up those little alveoli, and lots of moving around to keep junk from sticking in one spot too long. He is not really a fan of any of these.

The jury is still out on the central line infection as well. He hasn't had any further fever, but there is discussion of keeping him on heavy duty antibiotics (vancomycin) for six weeks (yes, I said SIX). No taking the pink stuff home in a bottle, folks. Six weeks of IV antibiotics. In the hospital. You're freakin' kidding me! Nothing is certain yet, but that's on the table. We just don't want any infection latching onto his snazzy new heart valve.

Speaking of the snazzy valve, we're working on switching him from one blood thinner (heparin) to what he'll be on when he goes home (coumadin). Coumadin is only taken orally, so we've got to get him eating to be able to get it into his belly. And no one wants him aspirating anything, so they don't want him taking food by mouth. Do we crush it up and send it down his NG tube?! Regulating his levels of heparin has been a roller coaster ride - tiny tweaks in his dosage mean giant swings in his bloodwork results. So, if we're going to ride the Coumadin Coaster, might as well start now.

Sorry if I'm a little less upbeat than I have been - things aren't all bad. In the good news department, Jay was able to sit up with support and was holding his head up very well on his own. He's tried to say "Daddy!" which appeared to mean "Daddy, make them stop doing this stuff to me!" He's becoming more alert and nodding/shaking his head. So we're getting little glimpses of our old Jay, and that does a heart good. A mom's heart, anyway.


Erin Mitchell said...

You guys are doing great- just being there for him! You are constantly in my thoughts and prayers, as is Jay and Luke. Hang in there! (Nice use of medical terms by the way- not sure if it's related to being married to a veterinarian or hanging around the hospital!) :)

Anonymous said...

You learn WAY TOO many medical terms when you spend this much time in a hospital! You and Derek are my heroes for all you have gone through and how you are dealing with it....sleep deprivation and stress would certainly tend to make one a little less than positive all the time!! Hang in there - as for these sideways steps...This Too Shall Pass!! Love, AJ

Anonymous said...

So glad you are getting a glimpse of Jay and what is to come. My last thoughts last night before I fell asleep were of Jesus talking to His Father as intercessor for all the prayers going up for Jay. I could hear Him say " this little boy Jay sure is a special little boy. He has so many people praying for him and his family" So thankful for the answered prayers and for the ones to come.

Keep hanging in there.

Vickie H

Anonymous said...

Hearing about glimpses of the ol' Jay is doing my heart good, too. Tell him Aunt Ali, Uncle Dennis, Dean and Alan are all proud of him and that we are praying for him. We are praying for you and Derek, too. Wish we could do more.
Aunt Ali.

Sush said...

Sounds like 'Dancing In The Dark' might have been another posting title. Whew...too much of that going on, huh ladybug? I am hoping today is a walk in the am I using too many catch phrases or what?
What I really mean is I am praying for today to bring you peace of mind, Derek renewed vim and vigor, Jay comfort and continued improvement, Luke rainbows and sunshine and a whole lot of rest for everyone.
Love to all and special love from me to you!

Archie Gupton said...

Hi Jen,
The little Tool Man Jay may have to let the sharp tools rest also. The time, well may be indeterminant.It is hard to think in terms of weeks now. Really, hours and days are enough, as the breathing on his own is an BIG improvement, and a transition for ToolManJay. Holding up his head is great!
Thinking of you guys, and many are praying for you. Too vague, hundreds by names know to God, and to us. The time line is relative, and hard to grasp. Jay will continue to improve, from a heart guy x 2 it is not as steady as we wish for adults. But, when progress hits, it surges! Jen, you are doing a great job comforting him, and caring for Luke. You are in GREAT hands at CHOP.
Thanks for sharing the ups, downs, sideways! Blessings, Peace, Grace & Hope. a&u

Anonymous said...

I agree with my mom here... you guys are my heroes too! Just remember that it is OK to have bad days along with the good days. That's why you have so many people thinking of you and Derek and Jay and Luke, so you don't always have to be the one to bombard Jay with positive energy. You have lots of people who can help you out with that today. I will send him an extra special dose of love and positivity so you can save up yours for him until tomorrow (because if I know you, you will be back to your optimistic self again in the morning). Keep your chin up and try to remember that you are never given more than you have the strength to endure.

Anonymous said...


First kudos for Derek for taking so many night shifts. If there were a Dad prize…
Sorry that this is going to last so much longer. It looks like you could be in this for a while. We are praying for little Jay and the rest of the family as well.

Dee & Bob

Anonymous said...

Don't you just want to yell "Patience, Shmatience, I'm ready to go home!"
I'm actually glad you're "a little less upbeat." It means you're normal :-) and you're ready for the next challenge. If there's one thing I learned in the NICU, it's that- just as you noticed- it's a roller coaster and you can't get off 'til it's over. When you're down in the trenches struggling to climb out, it's so frustrating. But when you get to the next peak, you can look back and see how far you had to come and that you made it. you don't really notice the height of a slow, steady incline. You need the valleys to truly appreciate the mountains.
Hang in there. Eventually that roller coaster will bring you back where you started--it will bring you home.