3 West Day 1

What do you think of my new look?

Big day for Baby Steele yesterday. We were told that Steele's central line (Broviac Line) in his chest would be removed and he would move to the 3rd floor. A temporary PIV was placed in his left foot just in case he would need to go back on anything that could not be taken orally. Pretty excited because this is exactly where we were before his last discharge at OHSU. Everyone describes this new venue as "3West". We are packed into a smaller room than the "POD", and share it with 3 other pediatric patients. The expectation is that you should be as involved in your child's life as possible. This includes pretty much everything that OHSU trained us on before Steele was discharged, administering his medications, diaper changes, and keeping an eye on his vitals. The only change is he is still on a continuous feeding pump. We are very familiar with all of this, it will be good to get more involved with his care, it has been several weeks since we were allowed to participate in his primary care. Of course there are RN's and Attending Pediatric Cardiology Doc's around to help with anything, it's just an adjustment from the CVICU.

The next big hurdle in the Glenn surgery decision is for the surgical team to "buy in" on Steele's numbers, anatomy, and risk of survival. There is a lot of concern surrounding his aortic arch construction and the stent that was placed a few weeks ago. The main issue is if the blood flow will be able to passively make its way from the head and neck and then get to his lungs without too much pressure resistance from the (moderately high) pulmonary artery pressure. The surgical departments meet every Wednesday and they will assess Steele's case and make their recommendation. This is a very big day for Steele, it will either mean he will go through with the Glenn or be put back on the heart transplant list because it is too high risk. The other critical piece of this is how to deal with the stent. Part of of the surgical team's thinking is remove or repair it for his growth and future, but it means putting him on bypass. All the surgeons at Stanford prefer to do all their Glenn surgeries without a bypass, because of the potential damage than can occur while the ventricle is not working during the bypass. So, the other part of the surgical team is saying let the stent be, it's one more layer of risk that we do not want at this moment.

Yes, I know, there is rarely a black and white answer to these delicate and risky surgeries, but the Glenn has always been our primary plan from the beginning, so we are hoping that the surgical team will buy into the Glenn. The Heart Failure Team and CVICU Team are saying go for it. Rachel and I know that this is a critical decision, but we will go with what the surgeons have to offer at this point. All the Stanford Teams are also communicating with our team at OHSU with their recommendations. Steele has a lot of eyes and hands on him right now, we sure could use your positive thoughts and prayers.

Until next time,
-B