Joy-Filled

After being home about three weeks, we scheduled Joy's heart catheterization for October 10. The sooner the better when it comes to heart issues, even though we knew the language barrier would make the whole experience just a bit scarier for her because we could not explain what was happening.

The hospital was so good to us. We let every single person know about Joy's newly adopted status and lack of English and they promptly accommodated us as much as possible. Once we got into her room, I stayed on the bed with her all the way into the cath lab and got to put the mask on her until she fell asleep. Of course I had to endure all the jokes about who they were going to operate on and I even got my own mask to show Joy that it wouldn't be scary!

We were rolled up to the waiting room of the cath lab on the 8th floor. What a view, huh? I'm pretty sure Joy took this picture because I wouldn't have thought to take such a cute picture of our feet AND the beautiful view out the window. Clever girl! She held it together until close to the end when the anesthesiologist was having us sign THE paper which you try not to read too closely. We swallowed hard, sent prayers straight up, and I made Bob sign. Yep, I did, and always do.

As soon as the procedure was over, we begged the anesthesiologist to let us into the PACU before Joy woke up so that she wouldn't be scared and get over anxious. (Last year, Joshua was screaming his head off by the time we got there). We were brought in the minute she arrived and in fact we were obviously in the nurse's way while they were getting her hooked up and adjusted in her little cubicle. We got a wonderful experienced nurse who figured out a way to get me back up on the bed before Joy woke up. Several hours later, she was looking more like herself and never freaked out at any point. It was the best that it could be.

What happened? Well, the good doctor was able to insert two lines to measure the pressures in her heart and at the same time put a temporary plug in the hole to kind of see what would happen. That went well and they proceeded to put this occluder permanently into her heart. Isn't that utterly amazing? It is wire mesh and we had to watch for some signs that blood was getting through but the doctor said the heart would eventually clot over it on both sides and grow tissue so that the blood flow would never see the device as it passed by. So far Joy has had no problems. The whole procedure from start to finish was about three hours.

After a few hours in recovery, we moved back to her regular room and she had to lie flat on her back for 5 hours. But you can bet as soon as we were allowed to get up, we did.

We toured the floor in the little red wagon. Funny girl. This is what you get when you give your kid the camera.

By nighttime, Joy was pooped. They decided to keep her on a low dose of oxygen to support her lungs and added a medication that we will be giving her every six hours to try to help her lungs heal from the unchecked pulmonary hypertension that has developed over the last six years due to her heart defect. She still has PH but the occluder has significantly reduced the pressure which we hope will slow or even stop the resulting lung damage. We are hopeful that this current therapy regimen may add decades of symptom free life for Joy and that seems so worth it!

Saturday morning we woke up to a beautiful day. Bob had gone back to the Ronald McDonald house for a good sleep while I pretty much stayed up all night trying to get Joy comfortable as she was coughing a lot. 

Our cardiologist came and did an echo to make sure the device was going to stay put and gave us the ok to go home. Just like that!

Sort of. We had to wait quite awhile to get our instructions, 3 days of meds, and lots of information. Every time the resident or nurse brought something or discussed an issue, we all thought of more questions and off they would go to find the answers. Therefore, I found many a picture like this on my camera, a very useful tool for keeping a child busy while you wait.

We've been home a week now and are adjusting to the oxygen regime. It's a bit of a lifestyle change and we are slowly figuring it all out. We let the kids know that it would only be a big deal if we made it that way. They have been incredibly helpful and caring of their sister. Joy is the best trooper and carries on without discouragement as far as we can tell.  

She truly is a joy to behold!