Monday, June 8, 2009

She's Complicated

to say the least.

Dr. Jonas said that his decision to NOT do the Fontan was an easy one. She has the "world's worst scarring adhesions" were his exact words. Not comforting. He also said that it took two hours for anesthesia to get her ready for surgery. He said "two hours is almost unheard of." And the good news? It only gets harder. Gaining access is becoming more and more of a problem. What does this mean to her future!? That's a rhetorical question as no one really knows the answer.

He said that she needs to be monitored very closely over the next year OR TWO, to figure out when she's ready for the Fontan. For years we've heard that they like to do the Fontan about a year after the Glenn (she was six months old when she had the Glenn, and that's pretty standard timing for that procedure) but it can be done as late as age three or four. So, I had to ask what waiting to do the Fontan - a year OR TWO - means for that standard of thinking. His opinion is that there is no magic age. He said that Harlie is very complicated and we can't use the textbook for her. We have to let her tell us when it is the right time. I had to tell him that is the case with every single issue/challenge she has in EVERY specialty. It's growing tiresome. I didn't tell him that, though.

He said that when she's ready for the Fontan, it will be a risky one. The scarring raises the risk of bleeding substantially. The average risk of death or brain damage for a normal Fontan is about 3%. In her case it could be double that. I was thinking that 6% didn't sound that bad. After all, she had a 95% chance of death before she was even born. But he said that 6% in this case is high. But, I'm getting ahead of myself. Those are numbers that I can't worry about right now.

It feels very weird to think of her getting the Fontan in a year or two. Just Thursday night we were slated to have it all done and behind us. And now, on Monday, we are back to waiting. And not for a short time.

Anyway, her recovery time should be about a week or two. She's in the Cardiac Intensive Care Unit (CICU) now and if everything goes well, she'll spend the next five days or so here. That's good for us in that I know her care is topnotch and we can go back to the Ronald McDonald House to try and get some decent rest.

How she's doing now...

We didn't get to see her until later than expected. We came up to the CICU, but they said that her heart rate kept on dropping and her room was full of doctors, so they didn't want us in her room yet. They ended up having to put her on a pacemaker for now. They will take her off the pacemaker tomorrow to test her heart to see what it does without help. I'm keeping my fingers crossed that she will be fine and that it was just the stress and trauma of the surgery that was the cause. They've talked about hooking up her pacemaker for good (she has the leads in her heart, placed at 4 days old, but they are not hooked up to the device yet). I know in the grand scheme of things, a pacemaker is nothing, but it would be nice for her not to need it.

She is being kept sedated for tonight (which is a good thing). The problem is that she has built up a HUGE tolerance for pain medication and they have to push the envelope as far as that goes. There is a delicate balance between keeping her comfortable and suppressing her cardiac rhythm, of course. She's currently on Fentanyl and Versed (among other drugs) and still waking up. So they upped her Fentanyl and put her on a drip. She's still trying to wake up (even tried to sit up, which was not fun to see) and get this - she started signing!!!

She signed "mommy" and "daddy" and when Tom came to her bedside, she waved "hi" with her other hand. Is she something or what?!?! Waved hi, like no big deal. She really amazes me. Then she signed "hurt" and when I asked her if she was saying "hurt" she signed "yes". Then she signed either "mouse" or "doll" (those signs are very similar and her movement was a little sloppy, so I couldn't tell which). I was thinking she was asking to watch Mickey Mouse. But then she signed "monkey", which is what she signs when she wants to watch Curious George (her absolute favorite). And about that time she went back to sleep. Thankfully. Because her "awake" time wasn't all fun and games. She looks just miserable and very irritated. And itchy. I'm sure that's the Morphine. But it was making her scratch and tug and if she grabs a hold of one of those chest tubes I might just pass out myself.

Well, it has taken me forever to write this (over three hours to be exact), as I've had to get up and down a million times and answer a bunch of questions. Oh, another plus, we know the nurse from before and she remembered Harlie. Anyway, I better take this chance to wrap it up for now. I'll certainly have more tomorrow (surprise, surprise) so check back then. In the mean time, please continue to think good thoughts for Harlie's recovery.

Thank you so much for all your comments, e-mails and phone messages. We appreciate every single one of them.

Much love,


Sandy said...

I cry when I read this. She is so special and it hurts to know she (and you and Tom) are going through this. We will continue to keep all of you in our thoughts. Lord I wish we could do something to help!!

Beverley said...

Wow...poor girl, we also had the fentynel drip!

Dr Jonas is the best, please rest assured that he made a good call today....even tho' it means waiting.

I know of someone who got the pace maker for their child....after lots of delays, and now wonder why they kept stalling!

praying for you all

Heather said...

thanks for all he updates Christy. finding time to do this for those of us waiting with baited breath is very kind. we will continue to send all our positive vibes, thoughts and prayers to you and Harlie. I hope you get some rest tonight.

Anonymous said...

Just checking for updates and wanted to let you know that i'm thinking about you and praying for a quick recovery. Give Harlie a kiss for me! Love and miss you guys!

Sarah (Lucy's mom) said...

Christy, I'm so glad all went relatively well, but my heart aches (no pun intended) for you in terms of the waiting--yet again--for the Fontan. But time will tell when Harlie is ready, and then you (and she!) will get through it--yet again. As you know, I can also relate to all of the wonderful "complications" like bad veins and extremely high tolerance to the pain meds. That's really hard to watch, when your little one is clearly in pain, and awake!!--AFTER HEART SURGERY, no less!! But I hope and pray that they can concoct a mix that will work well and allow her to rest. Well, I have to sign off now, but I'll continue to pray for all of you guys tonight! love, Sarah

Bill and Mary said...

Christy ~
Hi! My name is Mary Elizabeth and I am Gina Barnes' cousin. This is my first time writing here and my son also was born with CHDs, but to much less in severity. He had pulmonary stenosis and atrial septal defect, both were repaired on 3/27/09, when he was nearly 10 months old. He shared a room with a little girl who had just had her Fontan for Pulmonary Atresia. I am familiar with these procedures to a point, and I definitely understand what you were writing about her waking up on the drugs. Drew (my son) did the same thing and his surgeon was none too happy he was coming too so quickly because he was very agitated. Anyway, I just wanted to say hello, and that I am thinking about you all and will be following this! I am praying for Harlie's recovery and for peace of mind for all of you. I know it's not easy to continuously be dealing with life and death situations. Oh, I have a blog too:
~Mary E.

Anonymous said...

Just checking in on you all. We are thinking of you. Mike and Marcy

mom24girls said...

I am keeping little Harlie in my prayers and so will Jerry. Please take care and let us know if there is anything you need. I hope she recovers fast and you guys can get home. Take care.

Kim said...

Wow - no stopping the tears when I read about Harlie signing 'hurt'. I had to go away and then come back to comment. God, I hate it for her. And for you and Tom. And I hate it even more that the Fontan isn't behind you. Major suckage!

Hugs and prayers sent your way. Your updates have been fantastic - I don't know how you can be so clear with all that's going on. You are one amazing mama, with one incredibly amazing little girl!

Emma and Mommy said...

We are praying so hard for our beautiful little friend, and for Mommy and Daddy too.

Ayden said...

Oh Christy... you must be exhausted!!! It is amazing what the kids say when they are drugged up! :) In order for Ayden to keep quiet, we had to resort back to his baby einstien videos when he was drugged, otherwise he was just mad and restless.
Hugs to you.. hope things get better.

Rene said...

What an emotionally draining time! I hope her pain management is better tonight and she is resting comfortably. Sending lots of hugs and prayers your way!


Susan said...

Uggh! I'm glad they made the safe call but it IS disappointing. I hope they can keep her free of pain and that the recovery is quickish. I'm thinking of you all and will be checking for updates. Hugs and kisses to Harlie!

Anonymous said...

Hi family. I wrote on you FB pages but wanted to just tell you taht I am praying for all of you every minute. I am very sorry things didnt go the way you had hoped. But, as we have learned, harlie always wants to be the difficult child!! She does things when she is ready. Love to all of you, and please know that even though we aren't there, we thing of you every single day! Love to all of you. Kristie, Dave, Nate and Tayne.

Donna said...

Hoping you were able to get some rest and that Harlie's speedy recovery is underway. Please know there are so many people praying for you guys. Thank you so much for keeping your blog updated with everything you have going on - you're amazing.
Please let me know if there's anything I can do for you from here.
Miss you guys,