26 Days

Somehow I knew, when Dr. Lau (cardiologist) told me this morning that he'd be sending the referral to Dr. Kirklin (surgeon) and they'd be calling me in "a couple of days" to schedule the surgery, that it'd be sooner than a couple of days. I was right, four hours after we got home Dr. Kirklin's office called, and five minutes after that we had the surgery scheduled.

April 24th.

Now, you have to understand that I have severely mixed emotions about this.

On the one hand, we started on this journey on January 13th, when her pediatrician heard the heart murmur and decided to send us to the cardiologist. It's been a bumpy road, emotionally exhausting, but we've known for a while that it would probably come down to this, with absolute certainty for the last two weeks. Since this is such an overwhelming event, and stress and worry are our constant companions, and the day it was decided we would have to face this I've wanted nothing more than to get it over with, move on with our lives, heal, recover, go to Disney World.

On the other, as a mother, sending my baby into the operating room is something to dread, and dread hard. I know as well as anyone that anytime someone is having surgery, going under anesthesia, there is always a risk that they won't make it through and that this risk is minimal for this surgery. But there's still a risk, and any is too much for a mother. It'll be worth it. She will feel better. She will be able to be more active, and there will be less risk *afterwards* of life threatening complications. It's worth it... oh yes, it is, but still.

I'm okay if I don't think too hard about it, and I've become something of an expert at relaying the facts in a clinical manner since going through what we did with Mom. I can tell you what's going to happen, what's going to be done to Ally, but if I really think about what I'm saying, I'm a mess.

In that vein, I know how difficult it is for many people to feel comfortable asking questions, but don't worry. I don't mind, not at all.

Here's what's going to go down:

In the afternoon of Monday, April 23rd, we'll go in to meet Dr. Kirklin, who will check Ally out and then send us to the clinic for bloodwork and x-ray. This is just precautionary to make sure she's not sick.

Tuesday, April 24th, we check into the hospital at 5AM and get registered. The doctor will speak to us again before surgery, and we can stay with Ally until she's taken to the OR (I do NOT know yet if she'll be sedated before they take her away). The surgery will last roughly six hours.

The procedure is called a septal myomectomy, where they will cut into her chest and through her breast bone, then remove part of her heart muscle that is blocking the left ventricle. The heart has to be stopped during this time, so she'll be put on a heart/lung machine to keep her blood moving and oxygenated. The surgery doesn't actually take all that long, I think Dr. Lau said that a couple of hours is getting her back off the heart/lung machine.

During this time they will also implant the ICD, which will be programmed to watch for certain patterns, abnormal heart rhythms, and be ready to shock it back if it stops. It'll be implanted in her abdomen and the leads will run up under her ribs to her heart to help protect them from damage.

After she is out of surgery, she'll be transferred to the CICU for 24 hours. We can stay with her there, though we can't sleep there (I foresee an all-nighter). After that, she'll be moved to the pediatric floor with a private room. Optimistically, we should be able to go home on the weekend. 5-7 days is the prediction, so that's between Saturday and Monday.

Dr. Lau says she will probably be running around driving us crazy within two weeks of surgery because kids are ridiculously resilient, but we will have to keep her home for five weeks to avoid exposing her to germs. A cold or flu wouldn't necessarily be any more dangerous to her than usual, but any fever that soon after surgery has to be treated as a possible infection and she would have to be hospitalized as a precaution. No good!

So see? I can be clinical and tell you what's going to happen.

If I start to think about it, however, what you'd be getting is something more along these lines:

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... yeah, nobody wants that.