Pre-Ops Complete - 9am tomorrow

We have recently returned to the house from the hospital. It was a very long day and we have learned a great deal about the hospital. The only thing we failed to complete was the urine sample!

Wren had an EKG, echo, 5cc's of blood drawn (while sedated), clinic vitals and an MRI. The MRI took 2 hours and was the most invasive procedure. For sedation, Wren received versed which made him relaxed and conversational. He did not get very upset when they put the mask on him to put him under.

The goal of the MRI was to explore his heart function - the LV in particular. Since he had never had an MRI we were interested to see what was learned. There was some good news - Wren's LV has no EFE. Endocardial fibroelastosis can be seen on MRI as a white lining to the LV. That there is none is good!

We spoke with Hanson Quan, one of Dr Hanley's PAs. He obtained consent for surgery and told us that Wren is scheduled as second case, running partly concurrent with the first case which will overlap in the neighboring OR. He confirmed what many of you have told us, that there is a likelihood of getting delayed if a bed is not available in the CVICU (or if there is not ward room for a child being released from CVICU). However, based on current bed movement they are optimistic that Wren's case will go ahead tomorrow. A delay of a few hours is not uncommon and the anesthesia ppl were discussing leaving in the foot port access to rehydrate him if there is a delay. They decided it was too complicated and removed it to Wren's great joy.

Surgery Plan
Tomorrow the plan is for a 7am check in for a 9am case. Anesthesia and stuff would happen first so we may release him to the OR as early as an hour before.

We also discussed the surgery with Dr Quan. He said it is expected to last 6 hours from first anesthesia to recovery. He would expect Wren to remain sedated for 24 hours but be extubated around that time (or perhaps within first 24).

He explained that there had been a long discussion about Wren's case at their cardiology conference the week before. The discussion had been about the benefits of a single ventricle anatomy (if mitral valve failed) or a valve replacement if the aortic valve was poorer than hoped.

They also discussed the Ross-Kono and we repeated our concerns.

The plan NOW is to do the sub and supra valvar repairs as well as enlarge the aortic valve if possible.

The expectation is that valve repair will result in some aortic valve regurgitation. This lets some blood flow back into the LV and over time leads to left ventricle distension (enlargement). Currently, the LV is thick and muscular. However, Wren will have to be watched to see whether this regurg is manageable or is damaging his heart further to the point of needing more surgery.

The next surgery could be a valve replacement or "tweaking". But the goal is to get him years out of this procedure and they are quite hopeful of it being a success. The idea being that if he is quite a bit older when he needs a valve replacement he may be able to have an adult size valve.

We can but hope.

How is Wren Doing?
Wren is grumpy and upset at the hospital. He kept saying he wanted to go home and was scared (particularly at the echo). He did not like having no milk and said he wanted more milk NOW many times.

I am looking forward to him being in recovery, stable, being made comfortable so I don't have to think of putting him through this again any time soon.