CVICU Day 60

Much has happened with Mr.Steele since the last post. We were parked in another private room while we watched how Steele's heart reacted to the transition from Milrinone and over to Captopril. He looked great over the weekend and my parents were visiting from Eugene. We were told that a Cath Lab was scheduled for Tuesday (11/17). The Cath Lab always makes me nervious and anxious. This time they wanted to take measurements in three areas of the heart with many more sub measurements that apply to overall heart function. Pressure in the pulmonary arteries or pulmonary hypertension, was a key hemodynamic element the doctors wanted to measure. The hypertension issue is huge for a Glenn Surgery. There cannot be a large amount of resistence from blood entering the lungs because the Glenn causes venous blood from the head and arms to drain passively into the lungs and it would be difficult to overcome high pressures in the pulmonary arteries.

Tuesday morning: I have to prepare myself for what they are going to do to Steele. First they give a general anethesia, then intubation on a ventilator, and insert catheters through femoral artery and vein to both sides of the heart to take pressure measurements in and around the heart.  Of course this includes blood loss and blood draws for labs. We are always consulted about the procedure, but not how Steele's body will react to this noodling of wires and anethesia.

Steele came back and we were moved back to the pod. As soon as the sedation medications began their work away from him, immediatte tarchyadia and low blood oxygen levels. Not a good place to be. Our team and parents started to make suggestions towards a calming period. Steele was given ativan, chest xray, blood transfusion, hepaprin, and high flow 02 until things settleled down. Yeah, you can see why the cath lab always makes me tense.

After two hours of figuring out the right combinaton of things listed above, he was resting around 7pm. The heart failure team and cath lab team rounded to discuss the numbers. The cath lab has to have an agreement between the CVICU team to "hand off" Steele back to the ICU. There was so much information being exchanged that I cannot repeat it in clear terms. The MD cath lab spoke to me in person during this infusion of numbers and indicated that the numbers looked much better than the last time.

Rachel and I came in today and learned the teams decided they want to look at moving Steele toward a Glenn surgery. There needs to be a buy in from all levels of pediatric cardio, This will take a couple of days, I think by Friday we will have a recommendation from the entire group.

It shook all my senses when hearing this news. This was not on the table when we arrived down here. Steele is one tough fighter! Rachel and I are still trying to process all of the options, but they comes in segments. There are more decisions to make, for example his status on the heart transplant list.  The cath lab results qualify him as status 1B, but if we want Steele to move towards the Glenn, we may want to change his status to a lower status while we attempt the new trajectory.  Because....what would happen if a donor heart became available tomorrow?

The Glenn and the 3rd repair (the Fontan) are the surgeries what we have been praying for and wanted for Steele since the diagnosis at the end of January. He has turned his heart into the route for a longer term survival before he needs a heart transplant.. All of the doctors and medical stafff are still saying "Heart of Steele!"