This morning we met with Dr Lewin to discuss how Wren is doing post-cath. To sum it up, its going to be a long road but he's not having immediate difficulties.
To start off we had the weight check (5.65 kg = 12 lbs 6 oz approx). His (sleeping) blood pressures are good for him (84/48 in upper right arm and 77/40 in lower leg). The pulse in the left leg is good but the right leg is still faint.
The echo followed. It was not so good. The turbulence seen last week remains - only slightly less. Apparently it is often seen post-cath but decreases as the left ventricle adjusts. In Wren's case it is still turbulent. The trouble areas are the inflow tract and the coarc next to the left subclavian artery.
Dr Lewin sensed I was feeling discouraged so he said we should step back and look at the big picture and how we started wondering whether his left heart would cope or we needed to do a norwood. We repaired the most obvious problems and then it seemed to be looking good so we got all optimistic and felt that he might not need any further surgeries. Perhaps we jumped the gun and became a bit complacent because then we were shocked when we saw the problems with the aortic valve and arch last week. Now, we shouldn't be too discouraged or too optimistic about not needing future surgeries. The truth is we will jsut have to see.
In Dr Lewins mind Wren will probably need an OHS sometime in the future to remove some tissue obstructing his aortic inflow tract. It could be years from now but it could be just months away depending on how stable the obstructions and left side remains. He described the obstruction as moderate nad said some kids live with this for years and years. The key will be to follow him closely for now to check the obstruction is stable. We have another appointment in 2-3 weeks.
We will monitor:
1) Turbulence via echo.
2) Blood pressures.
3) Overall appearance and weight gain.
4) Behaviour (nursing, color, breathing)
5) The performance of the LV on echo (and muscle size).
If there are signs of heart stress Dr Lewin suggested we are aggressive in pursuing surgery for the inflow tract as prolonged difficulteis in this area could damage the valve which is doing well now (no leakage or obvious blockage). The open heart surgery for the tract is not on bypass and is generally well tolerated so its not the most serious form of surgery. By contrast he would hold off on the coarch area in the arch as long as possible as its likely that (if it is stable) and the arch grows in diamter the coarc area would be less critical. Also, due to its position it requies OHS on bypass (cutting circulation to the brain) which we would rather avoid.
So, that's the plan.
I asked about sleep stuff and that is not a cardiac symptom in this case. The fact he fusses sometimes and refuses to nurse when he's upset may be but its not serious since he is gaining well.
I asked about travelling to FLorida in early May, assuming it was out considering our month to month plan. Dr Lewin said that may well be possible but we won't know for 2-3 months. He said that was a decision to be made in about 2 and a half months but he wouldn't rule it out. I am not sure where that leaves us. Josh and I are both a bit apprehensive about leaving home, let alone flying anywhere. Perhaps if Wren seems to be really stable we would feel better but the prospect of kind of waiting for open heart surgery to be necessary puts a damper on things.
Apparently the longer he can wait the better. Firstly, it would be best if he never needs it and secondly with larger babies/kids the heart is easier to operate on.
I feel happy that he isn't getting worse right now but I'm also very sad that he will have to suffer again through all this stuff. I mean, I used to get teary when Frost had his baby vaccinations now Wren is probably going to be cut open and sedated and all that once again. I wish it wasn't even a possibility.
Dr Lewin still feels we are on the right path in terms of fixing his left heart rather than the Norwood. He hopes we will need fewer overall surgeries and his left heart pumping function (the ventricle) is strong. In the long term this is a plus. Still, we are now in it for the long haul not a one-fix wonder.