May 26, 2012

Back Home With Miss A

Thanks again for all your thoughts and prayers. Overall, the last two days went better than I could have hoped for, except for the outcome of the procedure, which looks like it helped but not as much as expected.

It was good that I didn't chicken out and postpone it, because the situation was just a little bit more advanced than we thought based on the ultrasounds.

I held myself together better than I thought I would on Thursday. The only point at which I fell apart was after I had to hand her over to the cardiac cath nurse. She literally said "I promise" to me three times - "I promise she'll do great," "I promise we'll bring her back to you better than new in a couple of hours", etc. I'm sure the hospital's attorneys would have been hyperventilating if they knew she was using that word, but it helped.

The procedure went a little bit faster than expected. I was in a consult room, not quite done pumping, when R called my cell to tell me it was done and everything went well.

The cardiologist was expecting the pressure on the right side of her heart to be somewhat lower than on the left. Normally, the pressure on the right side is significantly lower than on the left. If it becomes higher than the left, then damage to the heart muscle begins to occur.

When they got in there, they found that the pressure was exactly equal on both sides. So if we had postponed even for just a month, it's very possible the pressure would have been higher on the right than the left at that point.

They also found that the heart muscle had started to thicken ever so slightly just below the pulmonary valve, which technically is damage and is another indicator that now was the best time to do this procedure. The cardiologist said because the thickening is so minor and she's so young, it's likely that it will resolve itself as she grows.

The peak pressure on her right side was at 45 when they started the procedure. After they inserted the balloon to separate the partially fused valve flaps, the pressure dropped to 15. Anything between 1-25 is considered mild, 26 to 75 (I think) is moderate, and anything above that is severe. The cardiologist said he's hopeful the pressure will drop even lower in the next few weeks.

However, she had another ultrasound yesterday morning, and it showed a peak pressure of 27. So it was still a significant improvement, and the nurse practitioner who came in to speak with us about it said that she wouldn't have even needed the procedure if her original peak pressure was 27.

But it's still technically in the moderate range, and since it didn't improve as much as expected, she said it's possible Miss A might need the procedure again at some point, but likely not for several years if at all. We knew that pressures are lower when the patient is under anesthesia, but we didn't expect the number to come back that high.

We have a follow-up appointment in a couple of weeks, so we'll see what the numbers look like then and what the cardiologist thinks.

Miss A was quite the trooper. For the most part, she was her usual happy, smiley self. The only things she didn't like were getting the IV put in (I'm assuming, since they did that in the cath lab and I wasn't there for it, but they told us that had to be done before putting her under anesthesia), getting the IV taken out (because of the tape that had to be pulled off of her delicate skin), and the blood pressure cuff.

They had the cuff on her arm until around 2 a.m., when they were able to take the pressure dressing off her leg where they had inserted the catheter. None of us got much sleep until then, because it would inflate, which startled her, which caused her to start flailing her arms, which caused her swaddle to become undone, which made her cold, which caused her to start kicking her legs, which disrupted the ability of the oxygen monitor on her toe to monitor her oxygen levels, which caused the machine's alarm to start going off, which caused her to cry even harder than she was already crying because of the cuff and being cold.

So R and I were jumping up literally every 20 minutes to try to soothe her and keep her covered as best we could. We use the velcro swaddle wraps at home (I'm not a very good blanket swaddler), and we had brought one with us, but because of all the wires hooked up to her for monitoring, we couldn't use it.

Once the nurse was able to move the cuff to her leg around 2 a.m., she didn't seem to mind it so much, and we got a 3-hour and then a 4-hour stretch of sleep.

Now we're taking it easy hanging out at home for the weekend. She usually wants to eat about every 3 hours, but now she seems to want to eat on a 2- or 2 1/2-hour schedule. I think her little body is trying to make up for the calories it missed on Wednesday and Thursday. So I'm back to not getting anything done between feedings other than a quick bathroom break or grabbing a snack, but I'm sure she'll return to a more normal routine in a few days. I'm just so thankful and relieved that she's doing well - that matters much, much more than me getting stuff done...


SLESE1014 said...

I'm so glad you're all home safe and sound. It really sounds like she was a trooper! Keeping you all in my thoughts and prayers for everything to get back to normal soon ;)

Silver said...

What a lot to cope with - you ALL sound like you were very brave! Really hope that the next check-up brings more good news and that she (and you) stays away from hospitals for a good long while. Was smiling as I read about the feeding schedule - I had one like that too, especially during growth spurts. It does sometimes feel like you live on the couch!

Lorraine said...

So glad things are going as well as they are, that your little sweetie is home and happy and you know you did the right thing by going ahead with the surgery.

And Silver is right - living on the couch is par for the course. When my little guy was on a 2 1/2 hour schedule I would keep a pile of New Yorkers next to me - I finally had time to catch up!

MyTwoLines said...

Wow so glad you elected to do the procedure when you did. You have been through so much...hang in there and I hope someone is helping take care of YOU through all of this too :)

Reese said...

So glad that you decided not to put the procedure off. Sometimes it's hard to know if you are makig the right decisions as a parent, and I'd say that is proof positive. I hope you feel some relief now that the procedure is over and you are tucked in back at home. Hoping that A's next checkup brings more good news.

Libby said...

So glad this procedure is behind you and Miss A did so well. You guys all deserve a break for sure! Keep us posted when you can...

Mo and Will said...

so glad you guys are home safely. been thinking of you three, a lot. hang in there. i hope her recovery goes smoothly.