February 19, 2024

Today has felt like getting kicked over and over again. Honestly, this is how we anticipated David’s first hospital stay going, but things kept getting better by the day. After knowing David would be getting the Norwood those fears returned, and so far it seems as if something can go wrong, it will. 

Overnight things were mostly smooth but he had regular high blood pressures that they were dealing with. Around 8 AM today, neurology noticed mild seizures were starting to show through on the EEG. From what I know at this point, they are isolated to the back side of the right side of his head. He does not have probes on the very back of his head because of how fragile he is, so she can’t tell if they originate all the way back there, or just where the first probe exists. With this early detection,  he was started on seizure medications right away. Hopefully that helps him out. They did say that seizures do indicate some level of brain damage, but they cannot say how much at this point. They also cannot say if the seizure would be noticeable or not since David is on a paralytic, nothing could be seen. 

Due to this seizure activity, they decided he needed a CT scan right away. It was quite an ordeal for his nurse to get him into position to wheel him down to the scan. I believe there were 8 staff members involved in transporting him, his bed, the ECMO machine, cooler with extra ECMO blood, his IV tree, respiratory support, and his nitrogen support. The CT scan results were definitely not what we wanted. David has hemorrhaging in his brain, and is likely the cause of his seizures as it’s in the same area. The cause of the bleed is unknown but it could be due to a multitude of factors of everything he has been through the past few days.

The solution to the brain bleed is complicated. The best way for the bleed to heal is on its own, but for that to occur David needs to come down on blood thinners. The blood thinners are needed for him to be ECMO so that the blood running through his tubes don’t clot and cause other issues. So they will need to try to aggressively get him off of ECMO – faster than they intended, in order to reduce his blood thinners so his brain can heal on its own. To get off ECMO, his heart and lungs will need to be ready to support him,  which only he can tell us. 

David also has a lot of fluid, oozy, and leakage around his chest dressing. His diuretic could not keep up with the amount of blood produce he received yesterday, so he’s puffy again today. His right lung is clear, but the left one has so much fluid around it, that it cannot be seen on X-ray. Nor does it sound to be working well when they listen to it. 

Shortly after David returned from CT, we got word that the surgeon had wrapped up his surgery and would be arriving in David’s room shortly to check out the oozyness of his chest and to check the ECMO connections. A sliver of good news is that all the connections were good and it was just some mess that needed to be cleaned up in order to allow for the chest drainage tubes to do a better job. The surgical team fixed it up nicely and David is no longer oozing out of his dressings. However while they were in there, they did notice that David’s left lung had collapsed. 

A collapsed lung is a common side effect during heart surgeries – I remember his pulmonologist talking about it back in December. To investigate this, they are going to preform a bronchoscopy in the morning to look for any obstructions in his airways that may be making it more difficult for it to inflate. Tonight they are adding a machine that pulses air every 4 hours into his lungs also to help break up any gunk that could be blocking his lungs. These will hopefully give him every chance to succeed when coming off of ECMO.

The seizure medications that were added this morning have not kept David from any more seizures. Therefore, he will be started on another medication to hopefully get those under control.  

Since daycare had a staff-development day, Eli and Anna came and visited from from 9:30 until Adam took them home at 2:00. They first visited the library and then the Endzone. At the Endzone they played some floor hockey, played with toys, and did some crafts as well. Then we had lunch together in the family lounge. Fern the facility dog and her mom stopped by while we had lunch, which was a wonderful distraction After lunch Adam took them out to the playground for a bit and built a snowman and then they napped on the way home. 

Shortly after they left, I got word that David was heading down for his CT scan. The room was quiet with everyone gone, and it was perfect timing for Fern and her mom (our child family life specialist) to stop by. We chatted for a bit, and I gave her a run down of everything that had happened with David since she was out last week. This was a tough conversation for me. She has been there long enough to know that David must have coded to end up on ECMO. We gave her permission to have Fern in the room with David at anytime. We also chatted about Eli and Anna and how we have been trying to isolate them from everything that is going on with David. She agreed with how we had been handling it, and if they ever do start to ask questions, she’ll be a valuable resource to have.  

I’m really hoping that tomorrow is a less stressful day, but it seems unlikely with needing to come off ECMO very soon. I hope David is ready to support himself and that his brain can heal without too much more damage. It pains me greatly to hear of everything he is deal with and knowing there’s nothing I can do. The doctors did say that David now gets hypertensive when he starts to wake up (as opposed to hypotensive). They are happier with this because they can treat him for hypertensivity easier than hypotensive. We’re taking it one day at a time, so hopefully tomorrow brings better news – maybe that the seizure medications are working and he hasn’t had any more. We’ll see.