12:30 pm – I’m headed back to Little Rock. Miriam just called and asked me to come back as soon as possible. Emma hasn’t been doing too well with food, so she’s on the feeding tube, but it sounds like there may be some other problems in other areas.

Please pray for all of us at this time. I wil update this page again when I can. Continue reading →

12:30 pm – Emma gained two ounces yesterday! The feeding tube is helping.

Even better news is that they did the swallow study this morning, and thickened her formula. In her last feeding, she ate all 2 ounces on her own! The tube will stay in for a while until she proves she’s continuing to do well.

The neurologist is a little concerned about her muscle tone – it’s quite possibly related to her not gaining weight, but he wants to make sure. So he’s going to schedule a MRI or CAT scan for her. We’re not sure when that will be.

9:30 pm – Well, Emma didn’t do so well yesterday. What with all the tests taking up her eating time (no food from 7 am – 3 pm) and eating poorly during the night, she lost another 10 oz(!) almost overnight. We feel that this is a blessing in disguise however – now the doctors are looking into more than just her heart.

Looks like she’s having some reflux problems (confirmed during testing this afternoon), and possibly some swallowing problems. Both are VERY easy to fix – a little medicine and thicker formula. She’s on a feeding tube for tonight anyway. She’ll be staying for at least another day or so. The swallow test will be conducted tomorrow, and she’ll be seeing a neurologist to make sure she’s during ok.

So she’s not doing the best at the moment, but it looks like we’re on the road to find out how to get it all fixed. One bit of good news is that the doctor doesn’t think she’ll ever need any more heart surgery – her veins should be fine, and he’s very happy with the healing process so far. Now she just needs to eat!

10:00 pm – I’m back from Little Rock now, and Miriam and Emma are still doing well in the hospital.

Aftera a second echocardiogram (basically an ultrasound of the heart) this morning, the doctor met with us this afternoon. He said that heart seems to be doing fine. There is still some leakage around the patch, but that’s fairly normal for a hole like this. Since it’s stitched on, not glued, there is leakage around the stitches. This should go away with time as the heart walls grow over the patch – possibly in 6 months or so.

The doctor is now saying that there is only one misdirected vein (running from the lungs back to the wrong chamber of the heart in an endless loop) instead of two, and that one of the remaining three is very large, and should be conducting enough blood. The other side (heart to lungs) actually has an extra vein, though small.

The multiple chest x-rays show normally healing lungs, so they’re not worried about that. The local hospital was worried, but the Little Rock cardiologist says that’s because they’re not used to seeing recent open-heart surgery patients, and that everything is normal.

Basically they don’t sound concerned about her recovery in any way, other than helping her to gain weight. To this end, she has stated eating 30-calorie formula instead of the 24 she was on before (nomal is 20), plus they have started her on an additional diaretic prescription on top of the one she already has (this is to prevent buildup of fluid in her previously weakened lungs).

We are very grateful that there are no other surgeries or other intensive medical procedures on the horizon at this time! Continue reading →

12:10 am – Miriam called from the hospital. Emma is eating well, but still losing weight. The tests run so far don’t show anything obviously wrong. One doctor thought the two working veins from the lungs to the heart look too small, so they’re going to look further into that on Monday. An x-ray also showed a small spot on the lungs that could be pneumonia, but she doesn’t have any symptoms and they’re thinking it’s probably not that, though a specialist will be looking at it (she’s on anti-biotics just in case).

We’re basically waiting until Monday for more tests. I’ll be driving down there this afternoon (Sunday), hoping to make it back for classes on Tuesday, though Emma and Miriam will probably stay down there. Miriam is staying in the room with Emma there, so I’ll sleep in the waiting room tonight to save on hotels, and then head back Monday evening if everything is going smoothly.

12:30 pm – Every time the nurses try to wean Emma off the oxygen, her oxygen blood levels drop below what they like so they are gong to send her down by ambulance so she can stay on that. Hopefully Miriam can go with them in the ambulance – right now they’re just trying to find an ambulance service that will travel that far. I guess they normally use the helicopter for that kind of travel, but this isn’t urgent enough to really need it.

Depending on how things go, I’ll probably be heading down tomorrow then (Sunday).

10:00 pm – Well, it’s been a while since I’ve updated the page. Many things to do as soon as we got home (house is almost ready to sell), and Emma was doing great at first.

Tonight she and Miriam are staying at the Siloam Springs hospital for monitoring. Her heart is doing fine, healing seems to be going very well, but she’s having more breathing trouble and her wieght has actually been declining. Continue reading →