Thursday, August 26, 2010

Well, it's alright...

...even when push comes to shove.
Well, it's alright, if you've got someone to love,
Well, it's alright, everything will work out fine.
Well, it's alright, we're going to the end of the line.
--Traveling Wilburys, "The End of the Line"

Since I'm a big Tom Petty fan, and I also like Roy Orbison and Bob Dylan, I've always liked the Traveling Wilburys, especially this song. I've tried to work it in as a blog title before, but Jen hasn't gone for it. She's off getting some time with Luke and a nap, since last night was kinda long. So you're stuck with me and my song choices.

The end of the line I'm talking about today is the end of Jay's IV lines. Now don't get too excited, he still has an arterial line and a PICC line (a long catheter that goes from about his elbow up the vein to almost his heart) and 9 different IV pumps. He has had trouble maintaining a peripheral IV line. He's had three different ones in his right arm and one in each foot. With each one he keeps getting phlebitis--inflammation of the vein--sometimes as quickly as 24 hours after it is placed. One of the drugs he is on (amioderone) to control his heart rhythm is extremely irritating to the vein. Ideally it would be given through his PICC line so it would go into a large vessel, but he already has too many other things running through that line that have to go there. So he has to get this drug through the small peripheral IVs. Today they came to put in another one, and realized that they didn't have anywhere left to place one. So no more catheters in his hands, arms or feet.

Coincidently, the docs are weighing how much to feed him by mouth, and if they can switch some of his IV meds to oral. Fortunately, amioderone comes in an oral liquid as well, so after a consult with the electrophysiology team (heart electricians), he is going to be getting this through his nasogastric feeding tube. We have asked how long he will need this drug, since he only had a brief period of arrhythmia and had no heart rhythm issues prior to his surgery. The answer we got was (more or less), "Until someone has the cajones to stop it." Based on how bad his arrhythmia was, that's going to be a while. By the way, here's a photo of his ECG from that night.


And there's about 30 feet of paper that looks pretty similar. So, yeah, he's going to be on amioderone for a while.

Since they are now thinking about giving him some food orally, he got a visit from the speech therapist to check on his ability to swallow. We quickly became fans of her because she graduated from NC State, and her parents live down the road from us. Jay became an even bigger fan when she broke out the applesauce. He can't drink liquids real well yet (the CPAP forcing air through his nose doesn't help), but he did great with the applesauce. No coughing, and he opened his mouth to ask for more. Tomorrow, she promised guacamole.

This afternoon, he did try to talk some more, and we got both a "Daddy" and a "Mommy." Even better, he smiled. A real, toothy, two-year old smile. Credit for the smile goes to both Jen's coworkers who sent up some toy tools (along with a wonderful box of additional goodies--Thanks!) and my mom. He reached out to get tools, and with some encouragement pretended to saw off Granna's (my mom) finger. When her finger disappeared, he smiled. We couldn't help ourselves--we had to do it over and over again.

It is amazing how much of a roller coaster this is for me and Jen. Yesterday, in spite of getting Jay off the vent and getting to hold him, I just couldn't feel positive. I was going to write a blog post, but the only songs I could come up with were "Comfortably Numb" by Pink Floyd, "I'm Tore Down" by Eric Clapton, or "No One Ever Told Me" by John Lennon. I couldn't help but think about all the additional hurdles Jay has. Most of that seemed to come from a lack of sleep (we were up all night the night before since they extubated him at midnight) and too much time hanging out in the CICU. The gloomy rainy weather for the past several days didn't help either. After getting out to the RMH, getting a good night's sleep, hanging out with Luke, and seeing the sun again, I'm in a much better mood. That smile didn't hurt either.


14 comments:

Anonymous said...

Hey ya'll,
I was looking back at last Thursday's post and thinking how far Jay has come this week. I know it seems slow and "one step forward, two steps back" to you guys, but from an observer's perspective....he is coming along! Thank you for sharing this journey and all your hopes and fears that come with it. We are all with you every step of the way!
Hugs and prayers,
Neva M.

Anonymous said...

A toothy smile from a 2-year old is worth a thousand words.....so glad you all got some needed sleep - things always DO seem brighter after that! AJ

Becky said...

A smile from a kid can melt away many a sad day

Anonymous said...

Derek,

We will pray that is sinus rhythm improves. I had not realized it was still that bad. Please keep us posted on any rhythm changes.

You and Jen are amazing. We are rooting for you.

Dee & Bob Derr

Derek Foster said...

Sorry Bob and Dee (and anyone else I misled)--that ECG strip is from a week and half ago, and Jay's rhythm has been perfectly normal since then. The docs are just scared that if they stop the amioderone, his arrhythmia could return.

Anonymous said...

Derek,

Sorry my bad, but Jay's good. That just made me feel ALOT better. We are still praying for Jay. You (Jay) are always on my mind.

Dee

Jamie J said...

Derek, I always liked that song too. And I think its a great song for today, when things seem a little brighter. Hang in there (I just got an image of that horribly cheesy picture with the cat hanging off the table). We love you guys!!!
J and J

Anonymous said...

Dear Derek and Family,

Lizette Hardie forwarded an e-mail from Malcolm about what's going on with Jay and your family. We will keep you in our thoughts and hope everyone is feeling better and can return to NC soon!

You're in great hands at CHOP, which I believe is just down the street from where Diane and I went to veterinary school. If you need anything in Philly, just let us know, as we lived there a while and still have family and friends close by!

Take care,

Greg Lewbart & Diane Deresienski

Anonymous said...

Derek and Jen,

Reading every post with bated breath. It really is incredible to think about where Jay was just one week ago, but I can't imagine how hard it must be to appreciate that when the road ahead is still so long. Although only in spirit, so many of us are on that road with you; cheering for every small step forward!

Katie Sheats

Anonymous said...

Glad to hear about Jay's progress lately. Hang in there.
Andrew Fidler

Anonymous said...

Glad to hear Jay is improving Derek and thanks for the great updates through the blog. I read it every day. If there's anything you need send let me know.

Geof Smith

Anonymous said...

Hoping today will be full of more smiles.

Lynn and Scott

Anonymous said...

Derek,

I know exactly what you mean by those last sentences. Been there done that. I don't know if it helps to know that somebody else has been there and understands what you are going through but I figured I would give it a shot. :-)

We continue to pray that the next steps go smoothly and Jay continues on his path of recent success.

Sean and Cindy Toomey

Archie Gupton said...

Derrick, your choice of music is great.
Then, the beetles, beach boys,carly simon, simon&garfunkle,nitty gritty dirt band, james taylor, even willy, would sound good to our generation...it does give one another level of perception to see the written words.Thanks
You do know the FPCsoftball teammates are now big JayToolBoy Fans! Yes, Willy (of Shakespear on Avon fame) may be on to something: "Sleep, that which knits the ravelled sleeve of care"...You have come a long way with Jay, and the work of the meds, IV's, ECMO, Vent are now evident. So the body of humans, like your animal friends are systems both frail and durable, chemical and comples. Keeping the balance, that is the goal. You guys have much to be thankful for, yes that is easy for me to say, right? Tomorrow will bring its own worries. You know all this, but to hear you reflect, well, that is what Dad's do post crisis...Don't doubt, just trust, in suble progress or giant plateaus.Jay and Luke need you to be there for the next smile. Puts things in perspective, and we wish you were free of the load. Our love to Jenn, Jay, Luke and fbc's cleanupman...a&u