Cardio update

It was time for Jed's yearly visit to the cardiologist. Bit over one year since the surgery. Jed is excited. No one else in PreK has a cardiologist, and neither does Gus. He talks about visiting her by name, just verifying several times that I will be with him the entire time. I, on the other hand, am mildly PTSD remembering last year and hoping the results a year later don't warrant another surgery. Luckily I'm a decent actress, so Jed romps happily along beside me to the bus. As we ride the bus to Children's Hospital, it becomes clear that Jed's preferred unit of height is a Daddy. "Look, Mommy! That (ten-story hospital) building is taller than Daddy!" We check in and get height (3'6"), weight (41 lbs) and blood pressure. The check-in lady hands me a bunch of papers to update with his symptoms since last time. There are no symptoms since last time, so I hand them back. Jed rocks his EKG, then we eat our lunches in the waiting room. Well, Jed eats most of him lunch and as much of mine as he can wangle me out of. I promise him chocolate after we see his cardiologist. Then it's time for the echo. Y'all may remember the eventful first drunk-baby echo that Jed had. This one is eminently more boring. He watches Toy Story with a loose grip on my hand for about an hour while the echo techs take pictures of his heart from lots of angles. Then we go to wait for the cardiologist to look over all the data. Another nurse comes in to wonder why I didn't fill out the papers. Because there have been no updates (or even events) since last year. He's not on any medicine? Just his vitamin, which is already on the chart. Not even anything herbal? Nothing, no symptoms, no medication. No one who doesn't see this kid without his shirt on would imagine that he was born with only three chambers in his heart. She humphs a bit in a nice way and heads out, and I have avoided filling out three sheets of paperwork for no reason. Small victories. I meant to bring toys, but forgot, so we improvised a game of catch-the-pen. Jed whines a bit about wanting chocolate, but I remind him after the doctor. She eventually comes in and listens to his heart through the stethoscope. Then he gets to listen to his heart (and my bellybutton) through the stethoscope. She says the holes that were patched last year are healed up, and the small tricuspid valve that we've been watching is still small, but doing fine under the new blood pressure, and he is great. We schedule for next year and go to catch the bus back to school. I found a quarter on the ground for Jed on the way in, and he's been waiting for two hours to find the donation box for the hospital so that kids who don't have enough money can get the care they need. Yes, he's that sweet. Once we arrive at the bus stop I break out the chocolate. Jed is surprised. "Mommy, I forgot about the chocolate!" Heh. Mommy never forgets about chocolate. Back on the bus, back to school where the other kids are waking up from nap, back on the bus to work. I sit down at my desk and give thanks for a small but healthy heart on my fabulous boy. P.S. As we got off the bus, we passed a row of magazine stands. Magazine stands are sources of endless fascination for my children, they must look inside every one. This day Jed decided that he needed one of the magazines to read at the doctor's office. He selected his favorite and carried it in his hot little hand all the way to cardio. It was a bridal magazine.

North Shore Beach

After realizing that Jed had never been to a beach before, we decided that such a situation must be immediately remedied. So we went to a North Shore beach on Cape Ann on a recommendation from a friend, and it was perfect.

It was supposed to be a super-hot day, but we left the house in the middle of a thunderstorm. Halfway there it stopped raining. Unfortunately it took us twice as long to get there as it should have; construction on one major road and a huge accident that closed down another. Once we finally crawled our way to the beach, we paid our parking fee and walked (sloooowly with Jed) down to the dunes.

Jed was not very sure about it all. But after we'd pitched our cooler and sunscreened up we headed to the water, and then he was sold. This beach is only about 3 feet deep for half a mile, so the water warms up (!) nicely, and you don't have to worry about your kids being over their head unless they tip over.

The bottom has lots of tiny sand dollars. Jed got really good at spotting them, and we collected a few, along with some snails, in our buckets for a short walk. Then we hiked out to a sand bar, and Jim dug jumping pools while Jed reinvented the eternal game of "waves got your toes". Then we investigated the big rocks on one area of the shore, which were covered with interesting seaweed in parts and had small tidepools on the others. Gus said, "Mommy, this was a good idea!" Jed said, "Mommy! Beach! FUN!"

After climbing the rocks we bought a very reasonable lunch from the nearby chow hut, and then the kids spent a couple more hours making a series of castles that were overrun by the incoming tide.

We changed the kiddos and handed them a snack. Jed fell asleep mid-pretzel. We stopped by a farm on the way back and Gus and I went to pick blueberries. "Mommy, this was a good idea too. I like all your ideas!"

Thanks for the recommendation, chica, for our new beach spot!

In Which the Grandparents Visit and We See Winnie the Pooh

Jim's parents came to snuggle the poor sick baby after his surgery. However, after the amazing results of the cath, the poor sick baby was nearly all better, and the week became more about tiring out the grandparents than not overtiring the baby!

They arrived on Sunday. Gus and Jim picked them up from the airport and brought them home, where Jed and I were eagerly anticipating their arrival. The kids were so excited to see them!

On Monday and Tuesday we all kept mostly regular schedules. Jed took some serious naps (the last part of recuperation apparently) and had a blast showing the grandparents his parks.

On Wednesday Mom and Dad took both kids to the Children's Museum, which they always love. After a nap they headed out to our "backyard", the park down the block. Jim and I showed up to arrange a picnic dinner in another park where a kids' band was playing. Jed loves to dance, but after a bit of post-dinner dancing they both blew off the band and headed to the playground. The kids are so thick in the sandbox on these evenings that the air is dusty.

On Thursday we all took off. It was awfully hot, so although our itinerary doesn't look so bad we were all pooped when it was done. We took the train downtown to the Common and played in the playground for a bit. Then a quick (well, for everyone else but Jed, who's been the Poky Little Puppy lately) walk over to the movie theater to see Winnie the Pooh. Gus is fine, Jed spills lemonade on me and then climbs around for almost the rest of the movie. Good thing it was short. The rebooters really nailed it; Craig Ferguson is an awesome Owl and the stuffed animal credits at the end are adorable and memorable. After that we hoisted the kids up to shoulders and went to the Purple Shamrock for chowder, fried fish, and lobster. Another quick jaunt to the harbor, where we just missed a ferry. Waited about an hour. Mom observes that there is water to play in everywhere in Boston, including just off the docks. Of course Jed wants to play with me in the sandbox that is just short of diamond-creating temperature.

We board the ferry and enjoy the A.C. It takes about 45 minutes to get to Spectacle Island, which is made from the dirt from the Big Dig. It was a lot of dirt. There's a classic New England rocky beach, which Gus enjoys to the fullest for about half an hour. Jed is not sure what to do about the waves, but ends up happily filling his bucket with rocks in my lap. We realize that Jed has never seen a wave before, never even been to the beach before! More about that in the next post. We haul all tired people back onto the ferry and over to Fanueil Hall for some dinner. Mom tries a lobster roll for posterity. Jed is so worn out that he pukes up his dinner all over himself, precipitating a cleanup effort that is almost as long as dinner and ends in his falling asleep on my back in his swimsuit.

Boys and parents say goodbye and thank you. Houstonians ship out early on Friday morning, taking the worst of the heat wave with them. Thanks for that too!

Notes from the Cath Lab

And now the gory details...

I set my clock for 5:15 on Wednesday morning. So of course I woke up at 4:17. Sigh. Jed woke up early too, before 6, so to keep him from thinking about breakfast we got him dressed and Jim bundled us both out to wait for the bus. Waited about 20 minutes; walked all around the bus stop, looked at other people's gardens, counted the other people waiting for the bus. By this point Jed can say that he's going to the hopital.

We check in and are soon called to a room, where we meet one of the anesthesiologists and another of the cardiac cath fellows. The nurse invites us to come choose a toy, and while I'm chatting with one of the doctors he decides he wants to be held and jumps into her arms, thereby endearing himself to the entire staff (apparently this doesn't happen often). She was our nurse for the rest of that day, and he alternated between calling her "friend" and "lady".

Jed in tiger hospital gown. I give him the sleepy drops to chug, and I'm told that he will be mellow but awake. After about two minutes his head starts to seriously nod, and then he's out in my arms. While he was going down I sang him our little song about all the people who love Jed, and he said "Mommy" sleepily, so I sang him the "Mommy loves Jed" verse again and he went to sleep with a smile.

And then the doctors came back in and I put him down on the bed. The head anesthesiologist said, "Wow, he's so asleep we won't need any more anesthesia!" which for sticking a tube up from your groin to your heart is entirely unrealistic and in that second I didn't realize she was joking. She could tell by my face. Anesthesiologists don't make good standup comics, and parents who are about to send their child off with a bunch of doctors don't make a good audience.

Soon he was surrounded by a bunch of highly qualified people in blue scrubs, at which point I almost lost it. I must've looked pretty stricken, because the head anesthesiologist gave me a pat on the shoulder as they headed out. I went to the waiting room and didn't cry. Discovered that knitting is better than reading for not thinking about other things. I get the first call from the surgery room (they call you instead of having you stay in the waiting room so that you don't wig out the other patients, I think). Jed is doing fine, his vitals are good, they are starting to get data. Jim arrives after dropping off Gus at school, bearing a bag packed for a week's stay. Apparently I look bad, b/c he takes me out for breakfast. Note: if the place that sells you the muffin doesn't also carry butter, it means the muffin is already so full of butter that it doesn't need any more. Probably not the healthiest breakfast.

Back to the waiting room. A good friend who happens to be in the area comes to distract me while Jim boots up his laptop and starts to work. Second call from the lab: almost done, waking up Jed in around 15 minutes. What? It's only been 2 hours. Must be that they couldn't fix any holes here, so we're staying for surgery tomorrow. Dang.

Soon they call us back, and one of the fellows tells us that they put in 2 devices and everything is fixed. I almost fall over. So fast? Sometimes it just goes really well, he says. An excellent outcome. We hustle back to the room where Jed is coming to. I park myself on his bed and we put on a video. Jim says a prayer of thanks and then heads to work since there's not room for three on the bed. After the video both Jed and I have a nap (remember the 4:17 thing?). When he wakes back up we watch another movie and have some brief battles over staying still, but really he does fantastic. We have some juice and crackers, and later a late lunch. The mac and cheese is really quite good. Around 4 p.m. the nurse says he can get up and go for a walk, so she brings him some slipper socks and we go touring around the ward. It's a tiny ward, but Jed is so tired of sitting that we do laps for about an hour. The nurse has other work to do, so she does it and Jed gives her a hug or a shout-out every time we pass like he hasn't seen her 2 minutes ago.

Over time all of the doctors come by to check in. We see both cath lab fellows, both anesthesiologists, Jed's cardiologist, and eventually even the head cath doctor, who pioneered this treatment in children and has done more of them than anyone else in the world. I get the impression he did this one because there might have been surprises. "He has a good heart," he says, then explains, "We just didn't know."

In hospitals time doesn't pass like I would normally expect. I'm told that soon we will be sent down for an xray, and I think that means within 15 minutes or so, but actually it's an hour. Hurrah for a diversion, because Jed is so bored of the walk by now that he's trying to bust into the other rooms to say hello to the patients. My apologies to the parents of the baby he was trying to stalk. He does love babies. And then he's standing in the doorway of our room, calling "Laaaaady!" down the hall in the hopes that our nurse will come and play with him.

Wheelchair ride down to xray. He's now an xray pro. Everything looks great; the devices look like two little spiders in his heart. After around 6 months the skin will grow over them and they will just be part of his heart forever.

Back to the room. Try another video. Getting sleepy. Uncle Mike and Aunt Sarah arrive to great excitement that can't be sustained. Nearly asleep when dinner comes. Jed eats like a hog and crashes at about 7:30. I keep myself awake until 9 and then curl up next to him on the hospital bed.

Not a hugely restful night but not bad. Several times Jed rolled over and disconnected an electrode, which caused his electronics to beep and the nurse to come in and reconnect him. Around 3 a.m. my eyes bothered me awake and I had to go to the bathroom and do hot washcloths for a while. When I came back he was up and said, "Mommy, you back!" So thankful he didn't panic. So we went back to sleep again. Around 6:30 things started to hop in there and we just kept working to sleep through it, until 7 a.m. when the echo-man came and told us to be ready in about 15 minutes (finally, a man on my kind of schedule!). Jed lay calmly through the whole echo, which would have been impossible 6 months ago and which still surprises me even though he was watching cartoons. The echo man and I have a nice talk about science and puzzles (he started as a lab technician, but really finds echos to fit his puzzle needs better since he gets an answer in around 20 minutes rather than months. There is a lot to be said for that). Back to the room, where breakfast is waiting. We talk about colors of the Froot Loops and suck down some juice.

Apparently I have a REALLY cute kid. I heard some variation on "How cute is HE?" at least 30 times, and this is a children's hospital in which I assume that cute kids are a dime a dozen. The anesthesiologist says that some kids are cuter than others (but we don't go around telling the other parents that). One of the day nurses stops by and says, "How do I get to take care of YOU?" and our new day nurse says, "Sorry, he's yesterday's model."

The nurse practitioner comes in to give us discharge instructions. Jed's cardiologist comes to visit pushing an echo machine; she really wants a couple more measurements of the tricuspid valve. She explains what she's measuring, and upon understanding it I tell Jed that he has a nice Vmax. She says, "What do you do again?" Scientists who are recovering engineers are doubly weird people. The new days nurse comes in to remove Jed's IVs. Time to get dressed. Waiting the last 10 minutes for Daddy to come is torture. Out of the hospital by 9:30 a.m.

Note that I am really impressed with Children's on how they managed our expectations. I have the impression from the doctors after the procedure that the outcome we had was a reasonable expectation, but before it they had us completely ready to do surgery so that we wouldn't be crushed if it happened. Mind games are not always a bad thing.

I still can't believe I get to sleep in my own bed tonight!

And ... we're done

I like it when proposed extended hospital stays end in a giant anticlimax.

Rebekah and Jed showed up at Children's this morning at 7am. They gave Jed a glass of knockout juice which made him nice and sleepy, and then they put him under and took him to the cath lab. This was about 8:00. They put the catheter in through his leg up to the heart, looked around, and were able to "insert two devices" into his heart which plugged the holes in there. Around 10:30 they informed us that they were about finished and would be waking Jed up soon, and that his vitals were good. Then the doctor came to us and gave us the good news. We went to his room, and he was lying there, clearly stoned but conscious. He's supposed to keep his leg still for about 6 hours after the procedure, which is a challenge. He'll get a few more residual tests this afternoon (x-ray, blood test), and then he and Rebekah will stay there overnight. But he should be discharged tomorrow and hopefully that'll be the end of it!

Pre-op Day

Well, pre-op morning. It went really well. Jed was great right up until he was DONE (and then he went with Jim, bwahaha).

We were up around 6, but missed the bus by around 30 seconds. So up over the hill we went to the other bus stop. I don't wear Jed on my back much anymore, so he really enjoys it and we had a few conversations on the way.

"MOMMY!"
"Yes!"
"Hi."

"Police car!"
"Yes." Then Jed gave his abbreviated version of "It makes this noise, like that", which comes out as "Whoooo dat! Whooo-wooo dat!" So we "who dat"'d the police car, and then later the fire truck, and talked about how we were going to the kids' hospital and what we would do there. Got on the bus and rode it to Children's. Gus pointed out every other bus we saw on the way.

Checked in, no problem. Then to the cardiology pre-op office, where they directed us all over the place. First to radiology. Jed didn't want to get off my back until he saw crayons in their waiting room. Then we took three xrays which he much enjoyed, and wanted to spend the rest of the day shirtless.

Second jaunt was phlebotomy, where the assistant phlebotomist looked about 12. The head nurse looked old enough to drive, so I didn't ask for her diploma before she inserted the needle. I had told him what would happen, and he was upset by the needle but handled it well. He smushed his face into mine and cried all over me. Then he calmed down a bit, saw that the needle was still in, and cried all over me again. Then the nurse took out the needle and asked if she could give him a bandaid, and he choked out a sad "yes". All better after about 10 seconds, and he showed off the bandaid to whomever would listen all day.

On the way back to cardiology is a playground. Now, it's just not fair to have to go straight from giving blood back to the boring office, so we played for a little while. Three xrays and blood by 9 a.m., not bad!

Then a consult with one of the cardiac fellows for consent. Then vitals with a nurse, which he completely rocked. He took every exam and command like a pro and even pointed to the blood pressure as "I want that next." Sat still for the EKG and took off his own stickers.

Then paperwork with another nurse, and Jim showed up for consult with our cardiologist. By this point Jed would lift up his shirt whenever anyone brought out a stethoscope.

He was still doing great until after a 30 minute wait for the anesthesiologist. He was pretty done in that meeting, and then we took a quick tour of the cath lab and he was tugging me out the whole time. Lunch as a group and then I sent the boys home and went to lab to count cells.

Tomorrow we catch a 6:30 bus to begin at 7 a.m. If all goes perfect, we'll be done tomorrow. If not, surgery is already scheduled for Thursday.

Hospital Ho-oooh!

Next week is Jed's hopefully not surgery. We were asked to reschedule for Thursday, which is fine with us. Here's what next week looks like:

Monday huge experiment for Reb. Home exhausted. Must pack Sunday.

Tuesday arrive at hospital at 7:30 a.m. for blood work, EKG, etc. Expecting 4-6 hours of hospital with 3-year-old. This should be fun. Jed will be on a Jello diet at some point on Tuesday, I think.

Wednesday head to hospital for cardiac cath. If they can fix the holes during this procedure they will. Stay overnight and rest.

Thursday surgery if necessary. Then a few more days in the hospital for recovery.

I'll post when I can. Pray for us, please!