Good (Amelia) News

Amelia's second post-surgery follow-up appointment was last Monday.

Height, weight, blood pressure, and EKG were first.  Her height and weight alone were good indicators of how well she has recovered.  In the four weeks since her last appointment, she grew an inch and gained two pounds, putting her at 3'10" (99th percentile) and 49 pounds (95th percentile)!  Additionally, her blood pressure was normal and her EKG results were great, with p-waves "all over the place," according to her cardiologist.

The examination part of the appointment followed the data-collection part.  Amelia's cardiologist said that her scar looked good, but that we will have to be careful to keep it covered up as the weather gets warmer and sunnier, so that it doesn't darken.  In addition to looking good, things sounded good, too: post-surgery, Amelia's cardiology team could still hear what they were calling a "flow murmur," but it couldn't be heard on Monday.  

After meeting with the cardiologist it was time for another echo -- always the longest part of an appointment!  Definitely Amelia's favorite part, though, because she gets to watch TV... So she got to watch The Bee Movie while the sonographer clicked away, capturing image after image of her heart.  He got some great pictures, including several showing the actual repair in her heart.  We got a print-out of one to take with us:

See that bright half-circle on the upper right?  That's the repair!

More good news after the cardiologist examined the pictures: The pressure gradient in Amelia's SVC (at a 3-4 in the hospital and then a 7 at her first follow-up) was down to a 2!  This could be due to two different things: (1) there isn't as much narrowing of the SVC as we thought there might be, or (2) additional veins have opened up to help with drainage and have taken over part of the function of the SVC.  Either way, it's a good thing!

Amelia's next follow-up appointment has been scheduled for June.  In the meantime, she has to be on iron for about two more months.  The doctors aren't worried about the anemia, since it was caused only by the surgery itself, and are expecting that everything will be normal by then.  The only other continued effect of the surgery?  Amelia has to be on prophylactic antibiotics before dentist's appointments.  No big deal!

The last line of the summary report from Amelia's appointment is particularly fitting, given her activity level as of late: "There are no restrictions or limitations."  Hoping that this statement is true for years to come!

And if this wasn't enough good news for one week, we got some more happy, Amelia-related news yesterday.  She won the (literal, Boston Public Schools) lottery and will be attending kindergarten at the excellent school two and a half blocks away from our house.

For those of you thinking, "well, obviously..." let me fill you in on the craziness that is (or WAS -- it will change next year) the school assignment system for BPS.

BPS is divided into three zones.  There are roughly thirty schools in our zone, some about a 45-minute bus ride away.  Additionally, everyone has a "walk zone" within their zone, which includes all schools within a mile radius of your house.  We have three walk zone schools.  Instead of just attending the school closest to them, kids in the BPS system are entered into a lottery to determine which school they will attend.  When assigning children to schools, half of the spots at a given school are reserved for kids within the walk zone (minus the spots taken by siblings of current students).  The other half of the spots can go to any child within the larger zone (although walk zone kids can be considered for these spots, as well).  

In January, you begin the registration process for your future-kindergartner, bringing numerous documents to prove that you live in Boston.  You also bring a list in which you have ranked the schools in your "zone," from first choice to last.  After the first round of registration closes, everyone's preferences are run through a computer system, and children are matched with schools.  If everyone just ranked the schools closest to them, it would be no big deal.  But because some schools are better than others, or have special/desired programs, it doesn't work that way.  And, of course, we happen to live near three really great elementary schools, so getting into them can be kind of competitive.

Anyway, we ranked only four schools in our zone: our three walk zone schools, and one near-ish to my office downtown. (We figured that if Amelia didn't get into one of those, we would put her into private school or move to the suburbs... I definitely wasn't going to put my five-year-old on a bus to Dorchester every morning!)  As luck would have it, we got our first choice: A wonderful school that is literally just two and a half blocks from our house.  So -- BIG sigh of relief around here!

Assignment letter and mailing back the confirmation of attendance!

And that was our week!  Hope that you all enjoyed something green this St. Patrick's Day.  I leave you with a photo of our three little leprechauns...

Only 1/16th Irish, but enjoying the holiday, anyway!

More Hearts!

We had another heart-themed week around here, between Amelia's first post-surgery follow-up appointment with the cardiologist and Valentine's Day.

On Wednesday morning, Chad and I took Amelia back to MGH for her appointment.  First things first: height, weight, blood pressure... and a 12-lead EKG, no big deal.  (How things have changed since her first EKG, which she completely flipped out about!  This time around, she even helped take off the leads and stickers afterward.)  Then we met with the cardiologist, who inspected Amelia's incision (which is healing wonderfully) and removed the one stitch from where her chest tube had been placed.  Next up was the echo, which was the most time-consuming part.  Amelia did a great job, holding nice and still (thanks to Sesame Street) and taking deep breaths when asked.  After they had all of the pictures they needed, we spoke with the cardiologist again.

Amelia showing off a picture of her heart -- all repaired!

The good news: there was no pericardial effusion (fluid around the heart) at all, which means that we have been able to start weaning her off of her diuretic.  The not-so-great-but-not-entirely-unexpected news: the pressure gradient in the SVC, which is what indicates the amount of stenosis (narrowing) that there is, had gone up.  The number had been a 3 and then a 4 in the hospital, and was a 7 at her follow-up appointment, moving her stenosis from the mild to the moderate category.  The number could still go down, but even if it doesn't, it's not a problem so long as Amelia has no other symptoms.  So for now we wait and see, watching for headaches, facial swelling, or protruding veins in her neck.  And if it's necessary, they will place a stent in the SVC to augment it.

All in all, Amelia is recovering wonderfully.  She has another appointment in three weeks to make sure that everything continues to heal.

Thank you, again, for sending out thoughts and prayers -- and cards, and toys, and food... We've had a tough couple of weeks, but this whole process has been so much easier than it could have been, thanks to the support of our wonderful family and friends.

Wishing each and every one of you a happy belated Valentine's Day!

Our sweet little valentines!

Heart Surgery Update: The Pre-Op Appointment

We interrupt our backlog of holiday season posts to bring you this message about Amelia's upcoming heart surgery.

Last Monday, we took Amelia to her pre-op appointment, and spent about three and a half hours at MGH, talking to assorted people.  The whole thing was a little overwhelming, and a lot exhausting (for us and Amelia), but we came away from it feeling better prepared.

It was great to be able to speak with both the surgeon and the anesthesiologist.  Each explained what he would be doing on the day of Amelia's surgery so that we would know what to expect.  On the day of the surgery, we'll report to MGH at 6:00 AM, and they should put her under around 7:30 or so.  The actual surgery will begin around 8:30 or 9:00, and should be completed by noon.  (While it's amazing that they can repair a heart in a matter of a few hours, I have a feeling that those hours are going to be agonizingly slow in passing...)  She'll be on bypass and intubated during the surgery, and they'll keep her sedated for a few hours afterwards.  I found the anesthesiologist's description of the various IVs and catheters that they'll place to be particularly helpful in preparing myself for what Amelia will look like post-surgery.  (Will it still make me cry?  Probably.  But at least I know what's coming.) 

The surgeon also was very honest with us, which I appreciated.  He walked us through the potential complications, like infection, etc., and explained that there is a small chance (less than five percent) that the sinus node, which is the natural pacemaker tissue in the heart and is very close to where Amelia's defect is located, could be affected during the course of the surgery.  If that were to happen, she would need to have an artificial pacemaker.  Odds are, however, that Amelia will be completely fine after this surgery.  Her surgeon has been performing these kinds of operations for about thirty years and so this is pretty routine for him, which is encouraging.

In addition to the surgeon and anesthesiologist, we also talked to a cardiology PA, who walked us through the logistics of the day of surgery, a child life specialist, who will be on hand to help put Amelia at ease before and after the surgery, and a woman from social services (I guess to ensure that she has a safe environment to continue recovering after she's released from the hospital).  Amelia also had to have a chest x-ray (which she handled beautifully) and a blood draw (which she did not handle very well).  Definitely a long day! 

We got the results of Amelia's bloodwork at the end of last week, and everything looked good.  Now, all we have to do is keep her healthy between now and then, which is easier said than done!  She actually came down with a cold in the middle of last week (undoubtedly from something she touched while at MGH), but is just about over it.  If she has anything more than a runny nose leading up to her surgery, it will be rescheduled.  Not the worst thing in the world, but we've gotten to the point where we just want to get it over with, so fingers crossed that she stays healthy.

In just three weeks, Amelia's surgery will be over and she should be on the road to recovery! 

Our little cardiac patient, three weeks pre-surgery

Heart Surgery Update

Last Thursday, I got a call from Amelia's cardiologist to schedule her heart surgery.  (I know, it has taken me a while to get this update posted... Still learning how to manage this blogging thing!) 

Tangent: I was surprised and impressed to hear back from her so quickly, considering that this is a non-emergent procedure.  I was also impressed that the other cardiologist we've spoken with, the cardiac MRI specialist who was present for her MRI on Tuesday, came to speak with me not once, but twice, while I was at the hospital with Amelia, to discuss what they saw and to answer any questions.  I know these doctors are busy people, so it's nice that they've been as responsive and concerned as they have been.

Anyway, the phone call.  Amelia's cardiologists at MGH had consulted with some cardiologists at Children's and the cardiac surgeon who will be performing the surgery (who is also at Children's), and all agreed that she is a great candidate for surgical repair, so she was calling to schedule the surgery.  We had two dates to choose between: January 7th (with a pre-op evaluation on December 17th) or Feburary 4th (with a pre-op evaluation on January 7th).  Neither date is compromised by Amelia's tonsillectomy (which is scheduled for a week from today...), since a four-week recovery period is all that is necessary.  At the pre-op evaluation, we'll get to review the images and talk to the surgeon and the anesthesiologist.  Also, Amelia will have to undergo some bloodwork.  (Given her hysterics-inducing fear of needles, that should be "fun.")  I told the cardiologist that we would discuss the dates and get back to her.

After some back and forth over the dates – Better that she doesn't go back to school after Christmas to decrease the likelihood of catching a cold?  Better to go with the February date so that part of her recovery time coincides with school vacation week? – we decided to go with the later date, to give Amelia's little body some extra time to recover in between surgeries.  (Apologies in advance to my mom, who is already flying to New York for Christmas, and will likely end up flying back to Colorado in January and then back to Boston in February to help us out.)

So Amelia is scheduled to undergo heart surgery on February 4th. 

As I mentioned, the surgeon is at Children's, but the surgery will take place at MGH.  Apparently MGH does a lot of consulting with Children's, and so I'm not sure if this is per their normal course of business, or if this is because I was put in touch with the chair of the cardiology department at Children's through a very well-connected partner at my firm.  In any case, I am glad that she'll have a surgeon from the #1 ranked pediatric heart program in the country.  Can't do better than that, right?

Having a concrete date is at once a source of peace and a source of anxiety.  I am glad that we have the surgery calendared and that this will all be behind us in a few months, but I know that the time between now and February 4th is going to fly...

In the meantime (but probably after the tonsillectomy!), we'll need to prepare Amelia for what she's going to go through.  Does anyone know someone whose child has undergone heart surgery?  If so, I would love to chat with them.  I think the physiology won't actually be too hard to explain – she has a hole in her heart that the doctors need to fix – but I'm not sure how to explain how she's going to feel after the surgery (without scaring her), or the necessity of taking it easy (not a four-year-old's strong suit) for what could be several weeks while she's recovering.  Any suggestions?  While shopping for Christmas gifts online, I stumbled across this adorable stuffed heart, and think we absolutely HAVE to get it for Amelia. 

This has to be the best ever get-well-soon-gift for a kid having heart surgery, right?

Well, that's it for now with respect to Amelia's heart, and we likely won't have more news on this front until her pre-op assessment in January.  I'll try to post about some more cheerful topics between now and then.  With Chad's family in town for Thanksgiving and plans to spend Christmas with mine in upstate New York, that shouldn't be too difficult!