3 West Day 6

Thank you to all our Portland friends and families. 

These flags were created by several families and their children.

Happy Thanksgiving Team Steele! We are thinking of you all, we are so thankful that we have such a wonderful group of family and friends that continue to support Steele and our family. This holiday season will be especially memorable for us because now Steele has a network of new families that love and care for him. Rachel and I cannot thank you enough for all you have done and continue to do. Truly a thankful day for all of us!

Wednesday was a big day for Steele. In addition to the Heart Failure Team meetings every Friday, the Surgical Team meets every Wednesday to discuss Steele's plan and then give us their recommendation during rounds after the meeting is adjourned. I mentioned in the last post, that I was communicating with our surgeons at OHSU regarding their recommendation. I had some idea what the plan would look like, but it was ultimately up to the Stanford Surgical Team.

So, here it is:
1. Steele will get the Glenn surgery done at Stanford
2. Steele will not have the Aortic Arch repair done during the surgery because it will complicate the duration of the bypass and put him at a very high risk of heart failure
3. Move the feeding tube from his intestine to his stomach (ND to NG) and monitor how well he can adjust to a continuous feed cycle instead of the bolus feeds that we were doing the first time he was discharged.
4. If that goes well, Steele will be DISCHARGED until his scheduled surgery
5. The only piece of information that is not clear is when his surgery will happen. This could be anywhere from 2 weeks to 2 months.
6. If the short term solution is the path, then Steele will stay with us at the RMH
7. If the long term solutions is the path, we will return to PDX and then wait for the call from LPCH for the surgery and return to Palo Alto
8. Aortic Arch issue will most likely be taken care of when the third and final surgery is completed in 3 years. There may have to be an intervention surgery if the stent is presenting a problem for blood flow and pressure.

Yes, a lot of moving parts as always, but this such great news. Steele was in heart failure when we arrived and now he is scheduled for the second surgery. A friend of ours recently sent him a Superman outfit. I had forgotten what the Superman logo stood for..."HOPE".

Thanks for following and again, we are so thankful to you all!