Post-Glenn update

It has now been one week since Evelyn had the Glenn, the second of the three main surgeries for HLHS children. Intan was able to bring her to the OR and stay with her until she was fully sedated. On the way to the OR, Evelyn was looking around because she has not left the PICU for a very long time. She was actively searching for her mom and for support. Thankfully Intan could be there, after we could not be in the hospital during COVID. And thankfully the surgery went well. The Glenn was successful, but the surgeons decided not to repair her valve. There is still some leakage, but they think the Glenn shunt might relieve some of the pressure on the valve. Also, Evvy growing up might relieve some of the pressure and the pressure in her lungs decreases.

We have always heard the interstage, the time between the Norwood and the Glenn, is one of the most fragile times for HLHS kids. We experienced that to the fullest during our almost 3.5 months in the hospital. It was a rough and volatile time. Progress was very slow and with every step forward, a step back was around the corner. It feels different now. We are definitely not out of the woods, but we are definitely in new territory.

Evelyn was intubated before surgery, as is common. After the Norwood, it took weeks before she could be extubated. After the Glenn, it happened the same day. Now a week later, she is completely without oxygen. That’s such a difference with what we have been used to! In this last week, oxygen support has been built down, several meds have been completely built down. She now does not have any IC support anymore. For us, that is amazing and feels like a breakthrough.

We do notice the after effects of the surgery and building down her meds. There are several scars that have been bothering her and have been building up fluids. These have been treated, but they might still be bothering her. And we also notice that the surgery has affected her. She is still getting used to the new situation. A situation with less support. So that means she might feel what’s changed in her body and she might be bothered by everything that’s happening. Intan and I are now taking turns staying the night with her as she now needs to be comforted by us. She is now aware that other people touching her, might hurt her. It’s becoming harder for the staff to comfort her.

We are also doing that to prepare for what might be coming next, after the weekend: going to medium care! That will be a big change for us. We will get our own room, but also less staff support and we will have to do more ourselves. In many ways we will prepare for the next step, which is going home. We will learn more about giving her meds and feeding her through her tube. We have no idea how long we will stay in medium care, that will depend on how quickly Evelyn recovers and is able to go home. It’s crazy that the h-word has fallen in our conversations with the staff here.

So now we are preparing to go to medium care and we are praying that there are no obstacles that will prevent us from going. We are also praying for Evvy to become more and more comfortable and used to the new situation. We are praying that she remains well, free of illness and infections, and that she keeps on recovering and improving. Thanks for believing with us everyone!