Cully's Wave

This has truly been a journey. Cully is now 28 days old, 23 days post surgery and 3 days off ECMO; of which, the last 6 days have been the most hair raising of all. As things stand today he has had about 24 hours of solid vitals and very few issues, but the past week has been dramatically different.

Last Monday, Cully's care team decided to schedule him for a heart catheterization "heart cath" and ECMO circuit change for that afternoon. ECMO used a series of plastic tubing to circulate his blood and over time fibers build up creating clots, so it is very normal for it to be changed. Everything went great with both procedures; the heart cath revealed no major issues with Cully’s heart function or blood flow. It did detect some concerns with his lungs ability to oxygenate blood, overall this is a concern but something that his body can correct or live with. We all expected and Cully lived up to his reputation of not particularly caring for being moved or major changes and softened his vitals slightly Monday night and into Tuesday morning.

Late Tuesday morning, the left side of Cully’s face, particularly around his mouth began to tick rhythmically. This continued for a few hours raising concerns of seizure activity. Neurology was called in and an EEG was installed on his head to measure brain wave activity. After four tense hours of waiting for results, neurology’s review of the EEG data revealed no sign of seizure activity. The ticking subsided Tuesday evening after he received a dose of muscle relaxant and has not returned. The running theory on this episode is drug withdrawal….along with the fibers that build up, the ECMO tubing also becomes coated with different pain and sedative medications he receives, slightly raising the dose. When the new ECMO tubing was installed it was free of fibers but also the coating of medications.

Once seizure activity was ruled out, weaning of the ECMO flow rates began again. Throughout Wednesday flow rates were continuously reduced and the decision was made to remove the ECMO support on Thursday. This was a major step forward, but a perilous one. We had given his body a week and half to recover on ECMO and all signs were pointing towards his body being able to manage the additional duties. ECMO had run its course, once removed putting him back on ECMO was not likely to help him recovery, only prolong his life. 

On Thursday afternoon Cully was scheduled to go back to the OR to have the ECMO cannulas (tubing) removed, so late that morning the flow from the machine to his body was discontinued and stented off. This was the first major test - could he maintain solid vitals that would allow for a trip to the OR? Three hours past while the surgery before Cully continued and Cully had held all his vital with in ranges, in fact slightly higher than we had expected. He had taken over for the ECMO machine and was showing positive signs, next stop the OR; and knowing Cully’s history we all expected the hours after the visit to be a bit rocky, but felt fairly confident he could handle it.

The OR visit went smoothly. Cully had managed the cannula and adjustment to his external pacemaker wiring. Post Op, as usual, was a rollercoaster as vitals softened, lab results did not look great, and we spent an excruciating 30 minutes waiting for blood. However, his body began to adjust late Thursday evening and the labs began to normalize faster than they had on Monday following the cath. All signs were pointing in the right direction with his vitals were still registering on the low end of his ranges. 

Treatments with the PD catheter began Friday afternoon, as fluid began to build up again following the OR visit and removal of ECMO. Cully handled the PD treatments well and kept his vital at the low end of his ranges. Things were progressing, however so slowly. 

Early Saturday morning things began to turn in the wrong direction, Cully’s vitals began to weaken over a 5-hour period. At rounds that morning the care team was not at all optimistic about his prognosis. We made the decision that it was time for Cully to meet his sister. Dad and Tillie arrived at the hospital around 10am, she spent an hour entertaining the care team and meeting here brother.

Our first family photo, Saturday, Nov. 23, 2013.

We then proceeded to have some very difficult conversations with the care team about the options if Cully continued to deteriorate. After a long walk and some lunch, we settle on a game plan to do all we can for him that will support his healing process, but would not prolong his life with measures that he would not likely rebound from. 

Apparently, these conversations motivated Cully! Over the last 24 hours his vitals have increased to the top end of the ranges – when awake his blood pressure is in the mid 80s and when sleeping the mid to low 70s (low 70s were his highs on Friday). He is keeping his oxygen saturation in mid-70s to low-80s (about 10 points higher then expected). The strength of his vitals have allowed for the gradual reduction of some of his blood pressure medications and at rounds this morning the care team was much more positive. 

We enter a new week on a positive swing, with a cautiously bullish outlook on his recovery. We have a long way to go, hopefully less eventful than the past, but each and everyday we make progress is a success.

The goal for this week will be to get fluid off his body, decreasing the swelling allowing for his chest to be closed again. Which will hopefully be his last OR visit for a little while.

As always thank you all for your thoughts, prayers, food and assistance through this process. You all have made it possible for us to focus on Cully, Tillie, and each other, for that we are eternally grateful.