We're home!

Well, we are home!

Harlie was discharged at 7:30 last night. Her cardiologist wanted her out of there before she got RSV or something. They took several chest x-rays and found that she had atelectasis (the collapse of part or all of a lung by blockage of the air passages) in her right lung.Once they weaned her off the vent and put her on CPAP (Continuous Positive Airway Pressure) she really started to improve. I just don’t think she liked the vent forcing her to breathe.

After a few hours of continuously turning down the settings on the CPAP, they went to her normal trach collar on high oxygen. Then they turned the oxygen down to a level that we could give her here at home. We had our equipment company switch out our 5.5 liter concentrator for a 10 liter one. By the time we had her home she looked much more like herself. How could anyone be happy with all that stuff – IVs, boards, blood pressure cuffs, etc.? The poor thing was like a pin cushion with all the blood work they had to get. She’s got little scabs on all her extremities. Luckily she had a really good nurse yesterday that was really good at finding tiny little veins.

Well, as far as how the heart catheterization actually went. Here’s what we know.

Findings from the catheterization:

• The band on her pulmonary artery is TIGHT. This means that it is very hard for her blood to get to her lungs to get oxygen (creates a bottleneck). This is why we monitor her oxygen saturation levels. We knew this would happen sometime. When they operate, they will do away with this artery and re-plumb her heart.

• They found another defect. A bridge between two arteries, or something isn’t there. This is just more information to give to the surgeon so he is prepared and gets no surprises during surgery. I think instead of having one shunt, she will need two, but don’t quote me on that.

• Her right ventricle is small. This probably means they won’t be able to do the double switch surgery. But, the surgeon will ultimately make that decision.

• The worst news we got is that no matter which surgery is done, Harlie will eventually need a heart transplant. He was thinking in 25-30 years – just a guess of course. Sounds like far down the road until you think that she would be younger than I am right now.

The surgery date is March 6, unless something happens in the meantime. I feel a lot better now knowing that Dr. Jonas will actually be there next week, so should things change with her status, we have options. It is hard to believe that we are here again. When she was born, March seemed so far away. We are not looking forward to this experience. I can’t begin to tell you how hard it is to see your sweet little baby like that. And this surgery will be way worse than her first one. But so far, she has proved to be a strong little girl, so hopefully she’ll kick butt. Well that's it for now. Thanks for all your thoughts and prayers. Keep 'em coming!

Take care,
Christy