Tuesday, July 22, 2014

"Recovered"

As of yesterday, Magnus is 6 weeks post-op and thus is considered to be officially recovered from his surgery. Now we can pick him up under his arms, give him a proper bath, and let him climb things and pick up heavy objects.

In many ways, he does seem healed. He had his first day back at school yesterday, followed by a 2-hour playdate. I was hoping this would leave him so exhausted that he would peacefully drop off to sleep at 7:30, but it took an hour of struggle before he fell asleep at 9 p.m., as per usual. His strength is almost back to where it was and certainly dramatically better than when he first came home from the hospital and couldn't sit down or stand up on his own. He still complains loudly about being expected to go on long walks or to go up and down stairs, but I think it's mostly psychological, and he's able to do it.

Areas we're still working on include eating and sleeping. On the plus side, it's been 2 weeks since he last puked, but he's still not showing much appetite and still prefers to get most of his calories from chocolate milk and yogurt. I guess we're moving in the right direction, but progress has been slow. Luckily, he hasn't lost too much weight and is only down about 2 or 3 pounds from pre-surgery. As for the sleeping, I think the problem is a combination of a few factors: being in the hospital for 19 days where they need to check your vitals every few hours day and night, having bad dreams, and post-surgical itchiness. At any rate, for whatever reason, Magnus has not slept through the night since coming home from the hospital more than 3 weeks ago, and typically he wakes up a few times each night and needs a parent to soothe him back to sleep, preferably Mama. I think this is slowly getting better, too, or maybe I am just getting used to being exhausted all the time.

We had a follow-up cardiology appointment and echocardiogram this morning. I was nervous about this appointment, mostly because of the fact that his appetite is still bad and that had me worried that he might be having liver problems. The echo tech was acting extra nice to us (he is always nice, but seemed extra nice today) and then THAT made me worried that he was being nice because he felt sorry that he was sending us off to the cardiologist to get bad news. But everything went OK with the cardiologist. His oxygen saturations were a little higher than last time at 84, which is not spectacular, but fine for a fenestrated Fontan. I was also worried about his weight but that wasn't terrible, either. One piece of semi-bad news was that they still don't see any signs of movement in his right diaphragm, which was paralyzed during the surgery. It may be that the nerve just needs additional time to heal, or it is also possible that it will not heal. The more time that passes without any sign of recovery, the greater the chance that it will not heal. It's not a disaster if it doesn't heal, but that would mean that his right lung would always have suboptimal function, which in turn makes things harder for his already compromised heart. Anyway, there's nothing we can do now except wait. Hey, it's not a real pediatric cardiology appointment if you don't leave feeling vaguely discomfited about something, right?

Overall, though, it really does feel like Magnus, and our lives, are getting back to normal.

Sunday, June 29, 2014

Home


(Above: exiting the hospital after 19 days, Below: welcome home sign by our neighbor Audrey)

We are home! We got home around 1 p.m. on Friday, and there was so much to do! Presents for Magnus to open, unpacking and going through mail for me (I hadn't been home in 20 days!), a new medication regimen to figure out. After surgery, you're usually on some extra meds for a while. This time it wasn't too bad, although we did switch from being on 2x a day meds to 3x a day meds. Hopefully, as he recovers, we'll be able to drop some of the extra meds and will be on fewer than before surgery.

I can't believe how exhausted I've felt since we got home. I guess I was having an extended adrenaline rush the whole time we were in the hospital, and now that's over. It helps that my back and neck are starting to feel normal again after a couple of nights of sleeping in an actual bed!

Magnus is happy to be home, but the hospital has taken its toll on him, too. He's quite clingy and gets anxious if I am too far away from him. He's been waking up several times each night. He also has lost a lot of physical strength from all that bedrest. Ordinarily, when kids have a Fontan, they like to get them up and moving not too long after surgery, but in his case, he was tethered to the CPAP and nitric oxide machines for a couple of weeks, so he really spent a long time lying down. I knew that when he came home that his sternum would still be healing, but I was surprised by how weak and stiff his legs are, too. Going up and down stairs is difficult, and he's having difficulty with transitioning between sitting and standing. He needs help to get up after sitting on the floor or to sit on his potty chair. I'm sure that stuff will come back to him pretty quickly, but it's just a shock to see how quickly those muscles went!

Another challenge has been eating. The Fontan is notorious for the "Fontan gut" most kids experience. The surgery reroutes blood flow through the entire lower part of the body, including the gut and the liver, and as a result, bloating and vomiting are common in the weeks after the surgery. We've had some issues with puking, gas, and constipation, and Magnus is still very skittish about eating anything. Luckily, he does seem to be tolerating chocolate milk, supplemented by a few cheese puffs here and there

Being home has also finally given me the opportunity to start to reflect on the big picture. This surgery was a gamble. Magnus was considered a high risk Fontan due to his elevated pulmonary pressures, and there were many people who suggested that maybe he shouldn't have the surgery due to the risks for his particular anatomy. Although he did have complications (the paralyzed diaphragm and collapsed right lung), he actually had a relatively easy time with fluid buildup and seems to be doing pretty well with the Fontan anatomy so far. It was almost 5 years ago that we received Magnus's diagnosis and were told that a series of three surgeries would be our best option for him to survive. Now we are done with those surgeries! There will likely be more in the future, but hopefully not for a long, long time.

Friday, June 27, 2014

It's official

Magnus's INR was 1.7 this morning! WE ARE GOING HOME! They took out his chest tube sutures and are about to take out his IV. (When they take out your IV, you know you are on the way out the door).

Also, this morning I went down to the cafeteria and bumped into a couple we had met up in the ICU. Their 14-year-old grandson had been very sick and on ECMO. Today he is getting a new heart!

It's a good day.

Thursday, June 26, 2014

???

Good news: Magnus's INR this morning was 1.6!
Bad news: Although the nurse practitioner told us yesterday that an INR of 1.6 would be sufficient for discharge, today we have a new NP, who says that the old NP's notes say that we have to be 1.7–1.8 to be discharged!

The new NP is currently following up with the surgeons.

Wednesday, June 25, 2014

You guys are still here?

We've heard a lot of that today. And yes, we are still here. Magnus's INR this morning was 1.4. The good news is that the surgeons have backed off in their requirement of 2.0 and said he needs to be 1.6 to go home. We were 1.2 yesterday, so hopefully 1.6 tomorrow.

Magnus did not sleep well last night. We have a new roommate, and he has a very large family who like to visit. As a result, Magnus was pretty grumpy all morning although he did end up taking a nap in the afternoon. Iggy was also able to come down for most of the day, and in the evening we had a visit from our friends Katrin and Finn.

Overall, though, we are both pretty sick of the hospital and can't wait to be out of here!

Tuesday, June 24, 2014

Womp womp

Surgery says we can't leave the hospital until Magnus's INR is above 2. Yesterday it was 1.1, today it was 1.2. We could potentially get out of here as early as tomorrow, but it also might take a while.

Ugh, probably not today

The team just did their rounds, and it is looking more likely that we will spend one more day here. As I suspected, his anticoagulant levels did go up, but not as quickly as they would have liked. In addition, he scratched the scab off his chest incision and now the surgeons have to come look at it, and we're looking at possible antibiotics, which interfere with the anticoagulant. So, they're saying it's not impossible we'll get out today, but most likely tomorrow. Of course, it might not actually be tomorrow, either. This is why I never like to say for sure that we're leaving the hospital until it actually happens!