On and Off the Heart Bypass Machine (#CHDAware)

Update #3: Charlotte was put on the heart bypass machine and the repair began around 11:20 (CT). The APN just left us with this update–angioplasty has been performed on the RPA (right pulmonary artery) to alleviate the constricted blood flow. The conduit has been replaced to address the stenosis there. Dr. Backer is now performing an echo to check the heart and valve function and then will ease her off the bypass machine and let her heart take over again.  (Or he’ll take her off bypass and then do the echo). At this point, we think that they are leaving the valve–at last check it was competent so there was no need to replace it.

Next, Dr. Backer will “dry” the area and watch. And watch. And watch. Basically, he’ll watch for up to two hours to make sure there is no bleeding and, I think, that the valve truly is  competent now that it has blood flow at full volume and velocity.

So far, thank goodness, it’s been a textbook day, no complications and no arrhythmias.

We’re appreciating all of your texts, calls, emails and FB messages. Please continue to forgive us if we don’t respond super quickly.

It’s Congenital Heart Defect Awareness Week, so I’ll leave you with a few important CGD facts:

  • CHDs are the most common birth defects. CHDs occur in almost 1% of births
  • Approximately 25% of children born with a CHD will need heart surgery or other interventions to survive.
  • Most causes of CHDs are unknown. Only 15-20% of all CHDs are related to known genetic conditions.
  • In 2009, the hospital cost for roughly 27,000 hospital stays for children treated primarily for CHDs in the U.S. was nearly $1.5 billion. In the same year, hospital cost for roughly 12,000 hospital stays of adults treated primarily for CHD was at least $280 million.

You can help. Support CHD research. By supporting CHD research and Lurie Children’s, you’re supporting Charlotte!

9:17 (#CHDAware)

Update #2: The APN just updated us. Anesthesia got Charlotte all settled in and Dr. Backer made the incision at 9:17 a.m. (CT). Now he’ll excise 8 years of scar tissue before he gets her on the heart-lung machine and begins the wait.

Stay tuned…

The Wait Begins (#CHDAware)

Update #2: Phil and I are now up in the family great room at the Regenstein cardiac care unit, waiting. My brother is keeping us company.

We arrived at the hospital at 6:20 and begin preparing. Dr. Backer came in and greeted us. And the nurse had to do the antibacterial wipes again. That caused quite a bit of drama, but once it was over the anesthesiologist came in and gave Charlotte a shot of Versed.

By the time they took her back she was relaxed and giggling, and as Hal said, fittingly talking to us as they rolled her away, asking the anesthesia team about the bar code don’t and telling me how she knew about it.

The surgery will take 5 to 7 hours. Please forgive us if we don’t respond individually to each email or text to be a long day.

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12:15 p.m CST

The repair is complete and Charlotte is off of the heart & lung machine. The doctors cleaning up the bleeding and getting ready to close her up. That should take another hour. Then they’ll take her (still asleep) to the PICU and get her all wired up there. Another hour. Then we get to see her.

All went as planned. In fact, they had expected to use a homograft for her arterioplasty, assuming that scar tissue from the previous surgery would mean she had no pericardium (her own tissue) to make a patch. But, our miraculous kid had enough of her own tissue. As Julie told us, it won’t make a difference in recovery or anything, but it’s always nice to use the child’s own tissue.

We’ll see Dr. Backer in about 30 minutes and then go take a lunch break. Thanks for sharing our vigil with us.

11:15 a.m. CST

As of 10:15 a.m., the surgeons had gotten past all of the scar tissue, had administered Heparin, and were getting ready to connect Charlotte to the heart & lung machine. Once that is successfully done, they’ll get working on the two repairs.

She’ll receive a porcine (pig) valve and a Dacron conduit as there is no homograft valve-conduit available today in the correct size. The “parts” they put in are bigger than she needs today so that she can grow into them and hopefully give the repair longevity. We’ve been told that the material of the conduit/valve will not effect its longevity. It’s more a matter of how her body reacts with the pieces.

We expect another update around noon.