Amelia's heart has been repaired!
This post is an attempt to describe what we've been through this week, and to explain how Amelia's recovery is going. DISCLAIMER #1: Much of this is pretty technical, and I was in 10th grade the last time I took a biology-based class, so you'll have to bear with me here, and I may not get everything right... DISCLAIMER #2: This post is really, REALLY long.
MONDAY
Chad and I brought Amelia to MGH first thing Monday morning for her surgery. (Ramona and Louisa were home with my mom and Chad's parents, who were all in town to help us through Amelia's hospital stay.) We got her signed in and did a brief stint in a waiting room before Amelia's name was called. In her pre-op room, she got changed into her hospital garb, and then took a ride on her gurney down to the surgical floor. (I got a ride, too, since Amelia didn't want to let go of me!) Downstairs, Amelia got to watch cartoons, read a book, and decorate her anesthesia mask, with stickers on the outside and smelly chapstick (she went with the melon) on the inside, while we talked to assorted members of the surgical team. She also got some medicine to relax her.
Shortly before it was time for her to depart for the operating room, the child life specialist brought in a little DVD player with a Barbie fairy movie. As Amelia began watching, we gave her hugs and kisses and told her we would see her after her surgery. And the movie worked its magic: there was nary a tear shed (at least, not by Amelia) as her surgical team wheeled her off to the operating room at 7:40 AM. (In fact, the child life specialist told us that Amelia was actually laughing at something on the movie as she went under!)
And thus began an agonizing six-hour waiting period before we could see her again... Longest six hours EVER, despite the periodic updates from the operating room, to let us know when the surgery began, when Amelia went on bypass, and when she was off of it. At 1:00, we got the call that she was out of the operating room, and were to meet her surgeon on the pediatric ICU floor.
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| Prayer tree in the PICU waiting room |
The surgeon met us about 15 minutes later, and told us that the surgery went "okay." Yeah, my heart leaped into my throat at that one word... He went on to explain that the hole in Amelia's heart wasn't located exactly where they had expected, but was instead a bit lower, so they actually had to enlarge the hole in order to route the anomalous vein over to it, and then patch it. Amelia had come off of bypass just fine, though, and her heart was beating steadily on its own. So apparently "okay" is a more positive word to our surgeon than it is to me. I really would have preferred that he use a word like "well" or "fine" instead!
After speaking with the surgeon, we had to wait
another half an hour before we could see Amelia, while she was being admitted to the PICU. Eventually, I couldn't take it anymore and asked the front desk whether we could see her yet. They showed us to her room, where she was having an EKG and a chest x-ray... Okay, so they weren't quite ready for us, but I had to see her!
She was still sedated, and had
SO many wires and tubes hooked up everywhere: a breathing tube, a right atrial (or RA) line (which is a catheter placed directly into her right atrium, to monitor the pressure there specifically, since that was where the patches were placed), four other catheters and/or IVs (in her neck, one foot, and each hand), a chest tube, pacer wires, a urinary catheter, plus EKG electrodes and a pulse-oximeter... We knew that's how it would be, but it was still sobering to see my little girl like that.
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| About an hour out of the operating room... |
Amelia remained sedated for a while, resting. We held her hands, stroked her face, and talked to her. She woke up gradually, initially responding to our questions by shaking her head yes or no, with her eyes closed. She tried to talk a couple of times, and then realized that she couldn't with the breathing tube. Once she was more alert, and could cough, the breathing tube was removed. She cried a little, but handled it well. Her first complete sentence? "I don't like the crotch thing!" (Well, who DOES like having a urinary catheter, after all?) The nurse laughed and got the Foley removed for her. Amelia was alert enough to request her new Merida doll and a movie (Brave), but that didn't last long. She was out like a light again about half an hour later, poor girl!
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| A well-deserved nap. And no breathing tube! |
We talked to a number of doctors and nurses that afternoon, learning about what they were monitoring post-surgery, like the pocket of fluid in her chest, which needed to drain, and her junctional heart rhythm, which needed to return to normal. Her blood pressure and heart rate were good, though, and everyone said she was doing well. Shortly after she fell back to sleep, she rolled over to her right side, and a fairly significant amount of fluid drained out of her chest tube. Because her blood pressure stayed even, the doctors weren't worried about it, and said it was probably just the extra fluid in her chest cavity draining. (This was confirmed by chest x-ray the next morning.)
Only one of us could stay with her at night, and Amelia had requested Chad for the night, so I left around 7:00. The rest of the night consisted of a never-ending parade of medical personnel in and out of the room, checking Amelia's vitals and administering various drugs, which results in wonderful patient care but little sleep! Amelia did have a few episodes of elevated heart rate that night, topping out at about 195 beats per minute. Obviously we were a little freaked out by this, but they didn't seem to bother Amelia. During the first one, she just commented to Chad, "I can hear my heart." Because her heart rate went back to normal on its own and her blood pressure stayed constant, the doctors were not concerned, and guessed that the end of the RA line was just "tickling" her heart. The RA line was no longer needed anyway, so they planned to take it out in the morning.
TUESDAY
Tuesday morning began bright and early with a chest x-ray and an EKG. The x-ray revealed some fluid on her lungs, which is normal after being on bypass, and so the doctors started Amelia on a diuretic and some breathing exercises, in order to prevent any lung collapse. The EKG showed that her cardiac rhythm was still junctional, which means that her heartbeat was originating in the AV node (backup pacemaker tissue) instead of the sinus node (primary pacemaker tissue). The doctors assured us that this kind of cardiac rhythm was normal after heart surgery, due to swelling of the heart tissue, and that it did not mean she would need a pacemaker (phew!), but that it still needed to be monitored.
Amelia also had two of her varied attachments removed on Tuesday morning: that pesky RA line and the chest tube. Chad said that the removal of the latter was a bit "messy," and so I'm glad I wasn't there for that. They closed up that hole with one stitch, and then covered her most of her chest with a thick, almost foamy-looking, plastic bandage.
In addition to becoming less "wired," Amelia also got to eat and drink on Tuesday! She started out slow, with some water, and then added some juice and some milk, and ordered some pancakes. Before the pancakes could arrive, though, poor baby girl threw up. LOTS of liquid. Neither Chad nor I was there at the time. I was on my way in, and he had just ducked out to borrow the shower at his parents' hotel room, just a couple blocks away. Grandma and Grandpa were there, though, and so was one of the wonderful nurses, who got Amelia all cleaned up. Amelia
did end up having her pancakes later that morning, but they were put on hold until she got some Zofran on board.
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| Pancakes! Finally enjoying some food. |
Late Tuesday morning, she also got two more of her catheters/IVs removed: the arterial line that was in her right hand, because her blood pressure had been stable since coming out of surgery and no longer needed to be monitored constantly, and the IV in her foot, so that she could get up and walking. Her first attempt at walking around was not terribly successful... She made it to the doorway of her room and decided she'd had enough. When we got her out of bed later that afternoon, though, she made it all the way around the floor! The incentive? The fish tank in the family waiting room, just outside of the door for the unit. And we actually did a lap and a half that night, despite telling her that she only had to go to the end of the hall and back. Very impressive for being less than 36 hours out of surgery! Also, all of that increased mobility meant that she graduated from a bedpan to a four-legged mobile potty -- MUCH better.
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| 1. Balloons from her pal Benji 2. Resting 3. A special visitor, Anabelle the poodle! |
I stayed with Amelia on Tuesday night, and after dinner and her nighttime walk, we settled in for yet another Disney movie. (I swear, all the girl wants to do is watch movies! And, well, she just had heart surgery... so we're letting her watch all the TV she wants.) In the middle of that, she started crying and saying that her neck hurt, right where the IV was placed. The doctor took a look at the IV and couldn't see or feel anything wrong with it, but said that it could be taken out because Amelia still had another in her left hand if they needed it. WELL... removing that? Easier said than done! See, the tape that they use to keep IVs in is pretty sticky, which makes sense. But the IV was on the side of her neck, and so the tape was over some of her hair (which may have been what was bothering her)... She cried throughout the entire removal process (which felt like 15 minutes, but was probably less than 5). And yelled. At the nurse, who was only trying to help. (A much repeated refrain of late: "Amelia, be nice!") Anyway, she felt much better after that was out. And we finished our movie, read some books, and went to bed.
Tuesday night was much less eventful than Monday night. The nurses were still in and out, taking vitals and administering meds (oxycodone and motrin for pain, a diuretic to prevent fluid build-up, and a stool softener to counteract the binding properties of the other meds), but less often than the night before. We were up for a little bit in the middle of the night after a potty accident, but Amelia got a decent night's sleep.
WEDNESDAY
Which was a good thing because Wednesday, like Tuesday, began bright and early with a chest x-ray and an EKG, both of which showed improvements: her lungs looked more clear on the x-ray, and her cardiac rhythm was more regular on the EKG (showing a regular rhythm that would slip into junctional).
Because her cardiac rhythm was improving, the doctors decided to go ahead and remove the pacer wires. Before doing that, they gave her a dose of Versed, a short-acting sedative to relax her and induce amnesia, and had to peel off the large plastic bandage covering most of her chest. Amelia screamed bloody murder throughout the whole peeling process, thing like "stop that NOW," "it's not fair," and "I don't like that!" If she new how to swear, she would've been doing it! It was almost funny because, really, they were just taking off a big band-aid, and I wondered how on earth she was going to react to the removal of the pacer wires (which went through her chest and directly into her heart). The Versed kicked in right about then, though: the cardiologist was explaining that they would do an echo the following day to take a look at her heart when Amelia giggled and exclaimed, "Echo! That's funny." She then turned her head to look at the TV, which was at the end of a movie, and said, "That's pretty music!" Yeah, she was high; the Versed was working.
So they took the pacer wires out, which was kind of freaky to watch. I knew they were going to be long, but the wire just kept coming out of Amelia's chest! Amelia giggled a little at first and said it tickled, but then said that it hurt. No screaming or crying, though -- a definite improvement over the removal of the bandage. Then the cardiologist and I were talking about what a nice job the surgeon had done with Amelia's scar (it's only about 3 or 3.5 inches long, and is low enough that it won't stick out from her clothes), and Amelia asked if she could see it (it's high enough that it's not easy for her to look at). I hesitated for a minute -- would that be too traumatic for her? -- but decided that she may as well get used to it, and said sure, so the nurse got a mirror for her. She looked at it for a few seconds, and then smiled and said, "It looks funny." And I was grateful that she's only four and isn't (yet) self-conscious about things that make her different. (And also grateful that the Versed was still in her system.)
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| Almost smiling, after having the pacer wires removed |
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| Not quite 48 hours post-surgery: gauze pad where the chest tube was, band-aid where the pacer wires were, and scar |
The rest of the morning and early afternoon were fairly uneventful: watching movies, walking laps around the floor, eating lunch, and playing games on the iPad. Everyone commented on how good Amelia looked. And really, aside from being pretty pale (she is anemic after the surgery) and a little unsteady, she was looking mostly like herself!
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| Strolling around the PICU with Daddy |
She was scheduled to be moved to a regular pediatric floor, and so we were waiting for them to get a room ready for her. Shortly after I left around 4:00 (to be home in time for Louisa's 4:30 feeding), Amelia's new room was ready, and so Chad and Amelia bade farewell to the PICU and headed up to the 17th floor, with the former carrying the latter, who refused to ride in a wheelchair.
Up on 17, they got a tour of the floor, which included both a playroom, complete with lots of toys, arts and crafts materials, and (Amelia's favorite part) dozens of movies, and a family room, which had a nice fish tank and a million dollar view of the city. After settling into Amelia's new room, where they had a little girl being tested for a seizure disorder as a roommate, they had some dinner, visited the playroom, and watched movies until bedtime. Amelia slept really well that night, waking up only once for her meds.
THURSDAY
I got to the hospital around 9:30 on Thursday morning, joining Chad and his parents, who had stopped by to say goodbye to Amelia. They all left shortly thereafter, so Chad could get them to the airport.
I was almost immediately unhappy with the set-up of the rooms on the pediatric floor. Amelia was in the front part of the room, and it seemed like there was a constant parade of people past her bed: the little girl, her mom, her grandmother, her doctors and nurses... It was loud, not very restful, and afforded almost no modicum of privacy. You could pull the curtains around the bed, but the rooms are really too small to fit two hospital beds, two pull-out chairs (for parents to sleep in), and all of the furniture and medical equipment necessary for two people, so it's a very tight fit, and the curtains were constantly being tugged out of place. We had been told that the pediatric floor would be quieter than the PICU, because Amelia wouldn't have her vitals read as often -- definitely NOT true. Maybe her vitals weren't being read as often, but it was much louder. Maybe it's just me, but I think that kids who are recovering from major surgery should probably have their own rooms. Am I being unreasonable? More on this later.
Anyway, I was relieved to find out that Amelia's roommate was being discharged that day. And then I was busy getting Amelia settled in and distracted so that she could have her echo performed. The cardiologist, the tech, and two nurses crowded into our little space for the echo, taking images of her heart from multiple angles. It took at least half an hour, but Amelia was a good sport about it, thoroughly distracted by Toy Story 2. And everything looked pretty good! So good, that the doctors told us Amelia could actually be discharged that day. (We weren't -- okay, I wasn't -- quite ready for that, though, so we decided to stay another night.) The echo showed that there was only minor (and expected) pericardial effusion (fluid around the heart), which is great. It also showed some mild stenosis (narrowing) in Amelia's superior vena cava, which also was expected, since the rerouting of the anomalous veins took place within the SVC. Amelia's pressure gradient is between a 3 and a 4 right now. It may decrease, as the swelling of the cardiac tissue decreases. If it increases, or if she develops other symptoms (headaches, shortness of breath, swelling in the face, pronounced veins in her neck), she may have to have a stent placed in the SVC to enlarge it. That could happen within a few months or a few years, or 20 or 30 years down the road, or never. It's just something that we (and she) always will have to be alert for. I
knew that, even though Amelia should be perfectly healthy after she recovers, she will always have a cardiologist, and will always be monitored for heart issues. Even so, hearing about the possibility of another (albeit, less invasive) heart surgery, and thinking about how this surgery will follow Amelia forever, caught me off-guard, and I broke down. I hadn't cried much during this week, aside from a few minutes when they wheeled Amelia off to the operating room and a few minutes at home on Monday night, and I think the enormity of the whole thing just caught up to me. My poor little girl! She's already had to deal with so much. And even though I'm aware she won't know any different, I hate the idea of her having to manage this for the rest of her life...
But back to my rant about room issues: After the echo, a nurse came to inform us that we needed to change rooms: they use the room that we were in for overnight monitoring, and an older boy who needed a sleep study was being admitted. Because they don't like to have younger girls in the same room with older boys, we had to move. At first, I thought that this would be a good thing, and at first, it was. Amelia was moved to the front half of a room down the hall where the other occupant was a 6-week-old baby, undergoing some GI surgery. It was great at first because the baby was in the operating room. After he returned to the room, though? Not so great. And I bet you can figure out why... Most 6-week-olds cry a lot. 6-week-olds who have just undergone surgery and are limited to only 1 oz. of breastmilk/formula every three hours? Yep, they cry even more! Our nurse told us that there were supposed to be some room vacancies later in the afternoon, and said that maybe one of those would be a better fit for us. So we waited.
While we waited, we had lunch, watched some movies, read some books, and repeatedly encouraged Amelia to sit on the potty, as she hadn't pooped since the surgery. The nurses added Miralax to her drinks, but no luck. The doctors came in and conducted a final EKG, which looked good. Chad left to go home for dinner and bedtime, and Amelia and I had our own dinner. No word on a new room. I resigned myself to the fact that Amelia and I would likely be awoken several times that night by the poor little boy, and we turned up the volume on our movie.
As we got ready for bed, two good things happened. First, Amelia pooped! Just a tiny bit, but it was enough to ensure that her bowels were, in fact, working. Second, in a last ditch effort, I mentioned to our new night nurse that our previous nurse had said other beds/rooms may have opened up during the course of the afternoon, and asked if she could check. She agreed, and when she returned, said that she had found a different room for us! It was actually just one room over, and it was empty! The nurse warned us that they may need to place someone in the other half during the night, but I figured we'd get at least part of a night of peace and quiet, and so we took it! I thanked our nurse profusely, and told her that, after five years, three c-sections, and countless pediatrician appointments later, this was the only time I had ever been unhappy with MGH. Maybe I'm being ridiculous, but I really do think that kids who are being hospitalized should be able to have their own rooms. Our nurse agreed with me and told me that the
one thing the nursing staff had requested when the building that houses pediatrics was built 20-odd years ago was single rooms, but they were told that it wasn't cost-effective. MGH fail.
Anyway, the nurse helped us quickly move all of our stuff over into the back half of the room, and we settled in, enjoying both the quiet and the river view. And it was definitely the right decision. We did end up getting another roommate, but not until 6:30 AM or so. Instead, Amelia got the best night of sleep she had had since the surgery: from about 9:30 PM until almost 8:00 AM, waking up only to use the potty around 2:30.
FRIDAY
And then it was Friday!
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| 1. Sleeping in 2. What a view! 3. Her ET light |
Like I said, Amelia slept in (hey, 8:00 AM is late for her!) and we had breakfast with Chad when he got to the hospital. We talked with the doctors and med students for one last round, and spent time back and forth between the playroom and the bathroom, since Amelia's GI system seemed to have been jump-started by the Miralax, while the doctors and nurses got Amelia's prescriptions and discharge papers together.
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| Dollhouse in the playroom on the 17th floor |
And we were out of the hospital by 11:00 AM! (I'm guessing that we have the impending blizzard to thank for the unexpected efficiency.) One quick car ride back to Charlestown later, our little cardiac patient was home, welcomed by Ramona, Nonna, and Louisa, who had all missed her.
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| The shirt says it all! |
She's got a lot of recovering to do still, and will be back at MGH for her first follow-up appointment next Wednesday, but it is
such a relief to be on this side of the operation, and she's doing great. Right now, she's on only Motrin and the diuretic, and will soon start taking some iron to combat the anemia. We have some oxycodone and Miralax if we need them, but it's looking like we won't. Kids really are so resilient!
Thanks to each and every one of your for your kind thoughts and prayers -- and home-cooked meals! -- during this time. It has been wonderful to know how much support we have out there. And we'll continue to keep you updated!
