August 27, 2015

Week 5 in the PICU. The last 2 weeks have been dedicated to getting him back on his oral feeds and oral medications and then reevaluate his heart function mainly by Echo cardiogram. He was on a medication called Milrinone, which helps with overall function of the heart "squeeze". The Pediatric Cardiology Team are mainly concerned with the squeeze of Steele's heart function. What this means is how hard is the heart pumping and is the blood being delivered to the places where it should be? It's a very delicate dance for patients that have HLHS. Steele's big issue is now the Tricuspid Valve in the Right Ventricle is allowing blood to back flow or "regurgitate" blood into the Right atrium:

Steele was slowly weened off the Milrinone and then slowly put back on his oral meds to see how the heart function would take. Milrinone cannot be given orally, hence the need for PICU visit. After a week of being completely off the Milrinone and put back on his oral meds, he was given another Echo. The Echo did not look good in terms of the "regurgitation" issue, which meant we had 4 options that were presented to us yesterday afternoon:

1) Get Steele moved the unit called "The Floor" and get him ready for discharge (High Risk Scenario)

2) Continue his oral medications and reevaluate the heart function again in a week, but his stay in the PICU would continue until the second surgery (December). If heart function does not improve, put him back on Milrinone.

3) Put him on the list for a heart transplant at Stanford & move him down to Palo Alto in two weeks for a second heart evaluation and wait for a donor.

4) Begin hospice care at OHSU and call family members for their final visit with Steele.

Yeah, pretty stressful options & we had 24 hours to come to a mutual agreement.

We chose #2 after several hours of weighing out all the options. Moving to Steele to Stanford at this point would be too disruptive with the school year just starting and having Rachel move as well. Taking him home just seemed too risky and stressful, because it's a time bomb waiting to blow up. Option 4 was simply not an option for us. August 26th was another benchmark day for us, but we are both on the same page. Steele will be tethered to the PICU which is going to be challenging for all of us. Our main concern is his developmental options that the hospital will provide since he can't leave the PICU unit for such a long period of time. We are working with a team that specializes in Pediatric Physical Therapy for patients like steel & being thoughtful of his cognition and visual traits as well. 

The only thing that would make the trip to Stanford happen is if he were to suddenly not be able to survive on the medications or the cardiology team determines that he is too high risk for the second surgery, and the last resort is a heart transplant. So, here we go with many more visits to OHSU and plan on getting him ready for the second "Glen" surgery in December. 

You would not know that Steele is in such a critical state by looking at him. (Taken 8/26/15)