Updates on Annika and Harbor

Moreena (my little sister) reports that my niece Annika is off the ventilator tonight and is her old self! The most probable explanation for the sudden swelling in her brain, at this point, seems to be that it was triggered by high ammonia levels from her GI bleed. Because of her liver issues (history of two liver transplants and experiencing chronic rejection now), she is subject to frequent GI bleeds. It is hard to imagine a medical emergency as being "routine"...yet, when you have a child who has spent more times in medical crisis than out, some things, like GI bleeds get to be rather routine. What isn't routine is to have the GI bleed trigger a coma and respiratory failure within a matter of hours. Annika is doing well right now, but every GI bleed from now on will carry with it the omnious worry of what else it might trigger.

(God has answered so many prayers in this little girl's life. When she was only about a year and a half old, she had her first liver transplant. She was so critically ill that we all feared she wouldn't be able to hold out long enough to receive a cadaver liver donation, but neither of her parents or closest relatives were a "match". Our cousin, Eric, though, was the correct blood type and selflessly volunteered to donate a portion of his own liver for little Anni. In a freakish mishap, just a day or so before the surgery was scheduled to have been performed, during Eric's final work-up test, the staff at Northwestern Medical Center in Chicago actually (accidentally) sewed Eric's femoral artery shut at the end of his arteriogram. It was a mechanical mishap...and a freak one at that. But, the result was that he had to be rushed into emergency surgery to have the artery repaired before he lost his leg. After the surgery, he had to remain on blood thinners for a year. That completely eliminated him from being eligible to donate. At that point, his older brother, stepped in and offered to donate a portion of his liver. Having to start over from ground zero in the entire donor "work-up" process put Annika's desperately needed surgery off for several weeks longer. Finally, they had work up completed on Cliff and approved him to be physically fit enough to donate. The surgery was scheduled. Late the night before the surgery, one of the doctors called to say they might have a possible cadaver donor match. Just an hour or so before the surgery was scheduled, the call came telling Cliff that the cadaver was a match and they would use that liver instead. Annika's surgery wound up being far, far more complicated and risky than the doctors had originally anticipated. Only AFTER they had opened her up and were part way through dissecting out her own failing liver did they discover she had some anomalies of her circulatory system that would have made transplant with a partial liver from a live donor impossible. Immediately after the touch and go surgery was completed, the surgeons came out to talk with us. Two of those surgeons told us straight out that had they proceeded as planned with Cliff as the donor, Annika would have died that day. They said that by the time they discovered the anomaly, it would have been too late. Only because they had a CADAVER liver (with needed connecting arteries and veins) on hand, were they able to save her life. Actually, neither of the surgeons speaking with us took credit for having pulled Anni through successfully...both of them shook their heads in awe and declared, "God was watching out for this little girl." It wasn't the first time and it wouldn't be the last. A year later, when the cadaver liver she had received failed because of damage that had occurred to it when being divided (half of the liver had gone to an adult receipient), Cliff was on hand to donate a portion of his own liver. Anni had the needed portal vein, still from the cadaver liver and so was able to receive a partial liver from a live donor the second time around. God's perfect timing.)

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E-mail update sent by baby Harbor's mom, Elisabeth:

All kinds of things are happening today-
Harbor has been in pain today, though his sedation and painkiller was upped. He kept breaking through it and crying. We don't know if it's the chest tube surgery or gas pains (can't burp a baby you can't pick up) or what, but he's been obviously in pain. They gave him some gas medicine just before we left and he seemed to settle down some- we couldn't stay to see if it lasted.
They did a "trial off" today where they clamp off blood flow to the heart lung machine and see how he does on his own for an hour. His lungs are opening and the fact that they even wanted to try the trial means they think he's doing better. He kept his oxygen numbers up, but his carbon dioxide built up in his blood, and his heart rate was tagging 190 at times. His heart rate was up to 170 or so even before the trial, his white blood cells were looking immature (which is a sign they are fighting infection elsewhere in his body) and during the trial off his temperature rose to 99.1 just in the hour. Apparently the ECMO machine maintains his blood temperature at a constant, so no one knows what his actual temp is. He's on three big antibiotics, but they still took cultures from all over him to see if something is growing. If something is, I don't know what they'll do. We haven't heard that any of the cultures are positive yet. We won't know until tomorrow or the next day.

They are doing another trial off tomorrow and if he stays stable tonight and passes the trial off, they will have surgery tomorrow to have the tubes pulled out of his neck artery, sew him back together (the artery will have to be sewed shut and destroyed) and disconnect him from the machine. In the picture I sent out you can see in the background behind his head at the top two red tubes. They run into his neck artery and down into the top of his heart. The insertion and removal of these tubes is the most dangerous part of ECMO. He had a rough time getting them inserted. Please pray for great skill and safety.

By the time we left tonight his heart rate was about 159-162 or so. They don't know why it keeps going up. But 159 is ok, if he can maintain that. 180-190 isn't.

Please pray for a night of comfortable rest, and attentive staff.
Please pray his surgery will be prevented if it shouldn't happen tomorrow. Pray for wisdom for the doctors beyond the skill science can give them.
Please pray that the surgery will go amazingly smoothly, and that Harbor will transition well off of the life support to oxygenating his own blood, and that his heart and organs would make a smooth transfer.
Please pray against any infection.
Please pray for us because it's so hard to sit there when his life is in the balance. Pray we will have peace.
Please pray for an outstanding outcome and healing, protection for his lungs from popping from the ventilator, or getting scarred.

Thank you for praying for him. Our God is mighty, and made all the babies in the world. He surely loves this little one who suffers.