Our son Magnus was born November 19, 2009 with a serious congenital heart defect, HLHS. I set up this blog to keep our family and friends updated on his condition, and to connect with other families dealing with HLHS.
Sunday, June 29, 2014
(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.