24 March 2012

Heart Transplants in the News

Some of you know that Dick Cheney had an LVAD implanted a few years ago. Well, it appears after waiting for 20 months, he finally got his heart today. I can't say I'm a big fan of our previous vice president, but it's wonderful to see the process work the way it should and his prominence didn't move him to the front of the line.

Note that the LVAD Mr. Cheney received is identical in function to Eddie's Berlin Heart. However, since research into adult heart disease is substantially ahead of pediatric research (and since adults are bigger than kids), he was lucky enough to have an implanted pump rather than an external one like Eddie.

Here's hoping that Eddie doesn't wait anywhere near 20 months!

Cardiac Health Awareness

Since it's a quiet Saturday morning, I thought it might be a good time for a little public service announcement. Heart health has obviously been on our mind lately, and we've wondered if we could have done anything to catch Eddie's condition prior to his first collapse in January. In hindsight, there were a few warning signs like poor appetite, chronic respiratory problems, and being underweight. But how do you make the leap from identifying isolated symptoms to engaging in a more earnest (and frightening) conversation with your pediatrician?

I thought some of you (especially those with children that actively participate in competitive athletics) would find the info from the following sources helpful. The first is a book that you can find at kcls.org: "The Heart of a Child: What Families Need to know About Heart Disorders in Children". Also the recent (and unfortunately titled) SeattleMamaDoc blog entry "How to Prevent Sudden Cardiac Death in Young Athletes."

Make sure you talk to your pediatricians about your child's heart health at every visit... and feel free to use our example as proof that you're not just being a paranoid parent!

And finally, if you're reading this in the Seattle area, get outside and enjoy the wonderful weather!

23 March 2012

Changing of the Guard

After a week of non-stop hospital duty, Sarah is finally going home to spend the night in her own bed. The ICU is pretty crowded so we've been asked to vacate the honeymoon suite and move into Eddie's room...not the most comfortable place to sleep, but at least they won't need to page us the next time Eddie decides to create mischief for his nurses.

Today was a relatively quiet day as Eddie continues to recover and wean off the battery of medications he's been relying on to keep him comfortable (Dilaudid, Versed). The plan is to taper off over two weeks or so to prevent Eddie from suffering painful withdrawal...which means that the Eddie we know and love will be a little slow to return.

Now that his breathing tube is out (Thanks, Eddie!), he is speaking a little bit but continues very hoarse and, let's be honest, pretty grumpy. At least Sarah was glad to hear him say "Mommy" several times. No sign he remembers my name ;) Someone from Speech paid a visit this afternoon to check his throat and his ability to swallow, etc. The recommendation is to wait until Monday to start any oral nutrition since he isn't quite ready. Hopefully we can sneak a bit of apple juice into his gullet over the weekend :)

We haven't really talked much about the other kids, but they are holding up well. "Stefano" is on a camping trip this weekend, "Liz" is looking forward to a trip to the ballet store for her own pair of pointe shoes, and "Janey" the mover and shaker is busy with a birthday party and starting a write-in campaign to recognize hula hooping as a sanctioned event in the 2020 Olympics (fingers crossed that the fourth bid is the charm for Madrid, although their logo choice doesn't bode well)! That leaves "Phil" who undoubtedly will keep Grandma and Grandpa busy with some mischief or other...what would we ever do without him?

And a final piece of great news I forgot to mention...Eddie has been reactivated on the transplant list. We had to inactivate him immediately following his surgery and we thought it would be 4-5 days before he'd be back on. But his recovery has been so impressive that everyone agreed to reactivate him after only 48 hours. Woo-hoo!

22 March 2012

Night of the Bear

All caregivers in ICU are given a pager so the doctors/nurses can get in touch quickly, usually to provide status during surgery, etc. So as you can imagine, if the pager goes off unexpectedly in the middle of the night and when your son isn't in surgery, parents can get a bit worried. Well, it was a bit after midnight when our pager went off last night. Standard protocol is to call the ICU front desk to find out what's going on . . . need to meet the surgeon in the conference room, should go to Eddie's room, etc. . . . so imagine our heightened anxiety when no one was answering the phone at the front desk. By now, we're imagining all kinds of crazy scenarios so we got dressed and went downstairs, looking like people do when woken up in the middle of the night!

We were met in Eddie's room by 7-8 doctors and nurses with all of the lights blazing . . . obviously not normal. Eddie was on the bed and he seemed to be breathing ok and no one was working on him, so a bit of head scratching on our part. Finally, one of the nurses broke the news . . . "Eddie decided it was about time for his breathing tube to come out." Yes, Eddie managed to pull a fast one on his night nurse and, when she wasn't looking, pull out his breathing tube entirely. And as you can see from the picture below, we're talking about 24cm of breathing tube (9-10 inches).

Apparently he had a good cough and the nurse was going to help him clear his lungs, but Eddie managed to get his hands on the tube and gave it a good yank. Most importantly, he is ok . . . probably suffering from a pretty sore throat both from two weeks on a breathing tube and from pulling it out so abruptly. The nurses attached a temporary breathing tube in his nose and the plan is to watch how he does over the next few hours. If he does well, they won't replace the ET and will let him start to recover on his own.

So in addition to that excitement, we also welcomed a couple new furry friends to our growing arsenal of stuffed animals. First, the Berlin Heart company (yes, the company that makes the Berlin Heart . . . ah, you Germans are so creative!) sends a stuffed bear to all of its patients.

And then we were met at the front desk with this surprise! Again, I'm not naming names, but the guilty parties know who they are. Wow! If you're creative, there are some fun things to do at the hospital . . . we've added another to our list . . . walking through the corridors carrying a 3 foot tall stuffed bear. Impossible for the many patients, their families, and even the doctors not to smile when they see Sarah walking down the hall with this bad boy. Thank you!

21 March 2012

First 24 Hours

Sleeping quietly . . .

Eddie's constant companion . . . air compressor driving his heart pump . . . all the way from Germany!

The pump itself . . . Eddie's temporary new heart.

20 March 2012

Surgery Update, part 2

Wow . . . that's about all we can say right now. We just had the chance to see and touch Eddie for a few minutes before they had to do some more work on his dressings. Words can't begin to describe the awe and amazement we feel right now . . . our little boy has been through so much and to watch his chest rising and falling feels like a miracle. He has a long way to go, he continues to bleed quite a bit, and looking at him from the outside, he looks pretty rough . . . but he is stable and his surgeons/nurses are allowing themselves a few smiles right now.

Need to compose ourselves over the next few hours and will write more then. Thank you again for all your support!

Surgery Update

Sarah and I sat down with the surgeon shortly after noon to get an update. Overall, things are going well and Eddie is now connected to the Berlin heart . . . it has been operating for about two hours and no signs of trouble. There has been a lot of bleeding, which was expected, and the rest of the surgical team is trying to get that under control. Bleeding will continue to be a significant risk over the next 3-4 days while the Gore-Tex connectors on his left ventricle and aorta get used to the pressure.

We hope to see Eddie back in his room in the next couple hours.

To the OR

Eddie is on his way into surgery...we're expecting them to be done in the early afternoon. Thank you for all of your thoughts and prayers. We love you all!

19 March 2012

Ich bin ein Berliner

It's official . . . Eddie will be rolling into the OR tomorrow morning around 7:30 for open heart surgery. While we wish he were getting his new heart tomorrow, we are encouraged that our doctors feel that the Berlin heart is our best option at this stage and that Eddie is stable enough to undergo this significant procedure.

In summary, during surgery Dr. Cohen will 1) remove the atrial stent placed on 3/6, 2) close the resulting hole in the atrial septum, and then 3) attach the LVAD/Berlin heart. We are optimistic we can avoid a bi-VAD scenario where both sides of his heart would need to be connected. All of the clinical research clearly demonstrates that LVAD success rates are much higher than bi-VAD, so our fingers are crossed. Dr. Cohen will make the final decision either while Eddie is on the operating table or, more likely, after he's had a few days on the LVAD. Some children don't respond well to the LVAD at first, but then recover good function after a few days and thus avoid an unnecessary RVAD. For more information on LVADs and the Berlin heart, see my earlier posts here and here . . . or Bing it!

More to follow!