The News!

We are home and I am just about out of the post-hospital fog/readjustment to life. Children's has a lovely new block on their guest network that doesn't allow me to get to Blogger at all, so I wasn't able to update as things were happening. (Thanks to Nikki who not only updated the blog for me but also had our high-energy Jamie for almost two days!! It is such a relief not to worry about J while we're at Children's ... and I guess she really is becoming a big kid since she has her first sleepover under her belt!) At any rate, here goes ....

Annie was scheduled for the OR at 10:30, but wasn't actually taken upstairs to pre-op until 11:45 or so. (We were told that the case ahead of ours in the OR was taking longer than expected.) I had hoped to go back to the OR with Annie, but they gave her some happy medicine and then "tested" her separation tolerance by walking away from us in the pre-op area. Our drunk little camper couldn't have cared less when the anesthesiologist (translation: stranger!) carried her away, so I wasn't invited to go back with them. Experience-wise, I'll take this one over the cardiac cath last year anytime. As hard as it was to hand her over this go-round, it definitely was much harder last year when she was a tiny, tiny baby and the procedure was invasive. I had never been apart from Annie before the cath, but now that she is older that's not the case. (And it would be much, much different if she would be more tolerant of babysitters, darnit!) But I digress ....

In the end, we were told to expect the entire procedure to take about two hours. They planned to do the sedated echo first so that they could confirm that nothing wonky was going on with her heart. They would then deepen her sedation for the bronchoscopy and endoscopy, which required placing a breathing tube. The wait was not bad at all (Children's is REALLY set up for this, believe me!), although different than the wait outside the cath lab (updates are a little more plentiful, it's a much smaller waiting room and group of people, and it's a lot more intense in the cath lab in general). We were told by 12:45 that both the echo and the bronchoscopy were done and that they had just begun the endoscopy. The GI (who did the endoscopy) was the only doc who came out and found us in the waiting area, and she was with us by 1:30. She was able to tell us that Annie was out of the OR, awake, and doing great. After all of the info they have to give you pre-sedation -- especially when your child has a cardiac condition and every comment includes something about the risk to her heart -- that bit of news felt momentous. We were taken into see Annie by about 1:45, only about 90 minutes from the time we handed her over to the docs.

I, of course, got choked up when we walked in the room and saw Annie in her bed, sleeping. Scott told me a little while later that he had, as well. No matter how well you think you're coping with everything, there is something about seeing your child alive and well on the other side of a procedure or surgery, I guess. (The other odd thing was that we both thought she looked just like Jamie when we first saw her! Something about the way she was sleeping and the way her hair was ... I don't know, it was just strange.) The short version: super agitated when she woke up, finally got a bit of pain meds, settled down, waited for a room upstairs, eventually decided that we would go to the cardiac floor ... finally got into our room on good ole 8 east at about 5pm.

We had heard from the GI that she didn't find anything worrisome (she was looking for any effects from Annie's reflux) and didn't expect anything untoward to come back on the biopsies that she had taken. She gave us a lovely printout with photos of Annie's esophagus and stomach. (Scrapbook, anyone? That's one scrapbook theme I've never seen!) The ENT came in at some point and told us that he had not found a laryngeal cleft in Annie's throat, nor anything else that would require surgical repair. Hooray, hooray, hooray! And ... what now? Why won't this kid swallow solids? And why does she aspirate thin liquids?? Lacking structural issues (and this procedure was the last box to check-off on that), I think we're now firmly in the realm of developmental\behavioral. More pressure for Annie's speech/swallow therapist, I guess!

Meanwhile, an echo tech had done Annie's sedated echo ... the first echo we haven't been sitting right there to see (I say that as if we would know if something were wrong ... but we kinda would, size-wise at least) and we didn't exactly have an appointment with Dr. Smoot or anything. After pushing a bit, we were told that the cardiology fellow had been paged and would come see us. Understandably, we were interested in those echo results most of all and I didn't want to wait to get them. Soooo, the cardiology fellow came by sometime while we were in the recovery area. Obviously, it was a doc we had never met before, but he had reviewed Annie's echo and was able to tell us briefly about it.

Here's how it went: Dr. Muniz introduced himself, chatted a bit, and then told us that he had taken a look at Annie's echo. He then said her heart was normal. I clarified/corrected that he meant her Ejection Fraction was normal. He said noooo, the SIZE WAS NORMAL. I know Scott and I looked at each other in disbelief, and I believe a phrase starting with "holy" and ending with a four letter word escaped my mouth. We asked if he was sure and he said yes, that it had measured NORMAL. This was huge (no pun intended) for many reasons -- more on that later. Dr. Muniz did say that he had looked at the actual echo images and thought immediately that Annie's heart was dilated (enlarged), but then saw the report with the measurements and they put it in the normal range. His comments about his perception (and the fact that we didn't know him at all ... or was it more that we are so cautious now?) were enough to give us some doubt about the reality of the results, but we still were feeling pretty good. :-)

In the room Wednesday night, we settled in and sent Scott home to NH to pick up Jamie and take care of the pups. Annie slept a little more than usual, but she was back to her old self whenever she was awake. I managed to badger our nurse into taking out her IV (which hadn't been connected to anything since the recovery room) and that's the first time I have EVER won that battle! I was more persistent than usual, perhaps, since Annie absolutely hated it -- unlike last time when it didn't seem to phase her a bit. It helped that they had put the IV into Annie's foot and then immobilized it totally ... our nurse saw poor Annie try and walk with it and stumble, and that's when she gave in and took it out.

Annie was out (and I mean OUT) for the night by about ten. I managed finally to fall asleep about 20 minutes before a vital check (Murphy's Law) at midnight. They took vitals again at 2am, and then at 4am I woke up to the nurse attaching all kinds of leads to Annie's chest. She told me that the monitor had shown an irregular heartbeat and that she needed to do an EKG just to be safe. Of course, that woke me up rather quickly. (All I could think was that we just had gotten such good news ... now was the other shoe falling??) Luckily, Annie slept soundly through it all!

Thursday morning I e-mailed Dr. Smoot to let her know we were in the hospital and hoped to see her, if at all possible. Later our day nurse paged her for us as well. She popped in late morning and ... confirmed the good news!!!! At this point, ALL OF ANNIE'S HEART MEASUREMENTS ARE IN THE NORMAL RANGE! Not only is her ejection fraction (amount of blood pumped out with each contraction of the heart muscle) in the normal range -- as it has been since last October -- but also the size and shortening fraction (another method of evaluating the heart's function) have entered the normal range now. (The next post will be scanned images of the charts for both of these ... you'll be able to see exactly how far Annie's "big" heart has come!) Dr. Smoot is VERY encouraged by this ... as she said, it's great to get the ejection fraction in normal range, but as long as the heart/left ventricle is still dilated (enlarged) the "physics" of it just aren't there yet. (I think she meant that as long as the left ventricle was still enlarged, it is possible to anticipate another drop in function, to put it simply.) So having both the function AND size in the normal range now gives everyone more hope that Annie's heart is truly, truly recovering from whatever caused the weakening in the first place.

I asked Dr. Smoot about the irregular heart scare we had in the middle of the night. She was able to review the info and told us the EKG was normal and that she thought the problem had been with the settings on Annie's heart monitor. Phew!

So, the plan moving forward ... we don't have to go back to see Dr. Smoot for 4 - 6 months. (Strange, good, and worrisome ... all at the same time.) We began weaning Annie off of Lasix (the diuretic prescribed to help lighten the load on her heart) today, planning to have her off of it completely by the end of May. Dr. Smoot plans to take Annie off of her Digoxin sometime after we see her next. We expect that Annie will remain on her other meds (Beta blocker and ACE inhibitor) much longer. The ACE inhibitor in particular has been shown to offer long-term benefit, so Annie can expect to take it through High School! The Prevacid we hope to cut out soon, since her reflux was medication-related.

Is Annie cured? No, not at all. There is no cure for cardiomyopathy. The only given for cardiomyopathy, I think, is the variability of its course and its outcomes. Everyone is cautious to tell us that many kids can do well for some period of time, only to suddenly and inexplicably change course for the worse. So we are not out of the woods ... and Scott was quick to remind me of the roller coaster we went through when I was pregnant with Annie. (Thanks, hon. I managed to block that out for a bit.) Still, he's right. We have had good news before, only to be whalloped later on. It makes me much more protective of my responses and my reactions. We are happy -- so, so happy -- with the direction Annie's heart has gone and the fact that she is so stable and healthy now. With caution, we are elated and only hope that things will continue to go in this positive direction. And perhaps the past roller coaster has taught us -- to take a silver lining -- that we can handle whatever comes our way. I hope so! And today, what is coming our way is a crazy, happy toddler who can't swallow solids or speak quite yet, but who can do just about anything else! And she is here and healthy and we are grateful beyond words. Beyond words.

Medically speaking, the docs talk about Annie remaining stable (as she is now heart function-wise) for at least two years before we start talking about her cardiomyopathy being resolved. Yes, two YEARS. Even then ... well, I don't want to go there. I'll file that away with the risk of Jamie developing cardiomyopathy sometime in her life. (The file folder would be labeled "Makes Me Nauseous to Think About.") Needless to say, we'll worry forever ... more than the normal parental worry, I guess. For now, the most amazing thing to me is how long we can go before checking back in with a cardiologist and the fact that Annie has no restrictions on her life! If you've seen our videos in previous posts, you may have an inkling of how hard it would be to impose any restrictions (!!!) on this girl. She is on the go ... and we're happy to follow.

Thank you everyone, once again, for checking in on us and our girl. I was so disappointed that I couldn't update the blog while we were in the hospital, especially once we received such amazing, good news. I wanted to share it with all of you who have pulled for Annie and for us!

Annie, our sweet girl, I can't wait to see what you are going to do with the life that has been given to you.