Matters of Abby's Heart

The Friday before we left for NYC we had Abby's 2 year cardiologist appointment. We were a bit anxious going into it knowing that if Abby got as upset as last time during her echo that they were going to have to sedate her so they could get an accurate reading. Luckily she did get! We gave her a sucker and turned on Daniel Tiger and she did awesome! The tech said she got a great reading! Abby even let us put her in a few different positions just to be sure Dr B could see her heart from all angles. We were so relieved! Then we waited for Dr. B to read the echo and come in to give us the results.

Dr. B came in and listened to her and asked a few of the usual questions. Then he said based off the echo results today he wanted to present her case to the board (the board consists of the top cardio doctors & surgeons at Childrens Mercy) and then get her on the schedule for surgery if the board agreed with him. Dr B said that right now the ASD (hole in her heart) is more of an issue than the PVS (valve issue). So the hole needs to be fixed first. Then came the discussion of which type of surgery she would be having. We were always hopeful that we could wait until she was at least 5 before doing her surgery and then our chances of doing a catheter procedure were far better. But because she is only newly 2 and hovers around the 5th percentile on the growth chart open heart surgery would be her only option. Our hearts dropped for the second time in less than 3 minutes. And then I asked Dr B a question that I already knew the answer to but I needed to hear the answer out loud...Will they stop her heart? And again I knew the answer was yes but when he actually said "yes they will have to stop her heart" I almost threw up (and if you know me at all you know how I feel about throwing up). He went on to just give us a quick run through of the surgery including the recovery time. We were both shocked to learn she will only spend a day or 2 in ICU and then a few days on the cardio floor before getting released. The first 2 weeks will be the roughest on her but by 6 weeks post op she will (fingers crossed) be cleared for all activities. During her surgery they will see how the valve reacts. His hope is that it will greatly improve and nothing will need to be done. If that is not the case the surgeons will decide if they need to repair the valve right then or wait a little bit and do a catheter procedure down the road.

Dr B said he would present her case on Tuesday but warned us that if they had more serious cases like those patients actually in the hospital she might get bumped so to expect a call from him in a week or two. And then we were on our way home to wait. I won't lie-I was a mess on and off for good few days. Its not like we didn't expect this day to come but we just didn't expect it to come this soon. It's a lot to process. It's a lot to explain to our family. It's a lot to explain to Ben. It's just a lot all around.

Tuesday rolled around and I was trying not to get my hopes up that we would get a call that day or that week but my phone rang and it was Children's Mercy. Dr B said the board agreed with him and that they wanted to get her on the surgery schedule. He said we just need to get it done in the next few months and to look over all calendar so when the scheduler calls we had an idea about when would be good for us. He also mentioned that because she is so small the board wanted us to be aware that she will more than likely need a blood transfusion. We are hoping we can be a direct donor to her and will find out more later on that matter. The scheduler called a few days later. She asked when we preferred to have Abby's surgery and we said July. After going over the family calendar as well as Vince's work schedule mid-July was going to be the best time for us. We have 3 family trips planned for June, the kids summer school camps have already been scheduled & paid for and Vince tends to schedule 4-6 weeks in advance for work trips. The scheduler said she was only scheduling for May & June but July's schedule would be out next month. She said July shouldn't be a problem and she'd call us in a few weeks. So now we play the waiting game again. I think I will feel a bit better once we have a date set or at least I'm hoping.

In closing, I want to say just how thankful we are for every ones thoughts and prayers for Abby's heart over the past 2 years and hope you can spare some extra prayers for her now. I will update as soon as I have a date or if anything changes.