It felt like a monumental moment. Waiting in the waiting room, until 45 minutes after our scheduled appointment time (Because, in my mind, you arrive early to meet with a surgeon. He is important enough – he doesn’t have the time to wait for us, but we will wait all day for him.) – I was so nervous and excited to meet the man who will operate on my son.
We were not disappointed. I wasn’t kidding – we were in the presence of greatness this morning. Dr. Hanley was a confident, kind, patient man. He was excellent at explaining the procedure and took the time to answer all our questions. We gave him a Keen on Kiran wristband, and he wore it while letting us take a picture while holding Kiran.
So many encouraging things came about during this meeting. First of all, being impressed by Dr. Hanley gives us even greater confidence in him. Secondly, he said he didn’t see anything about Kiran’s anatomy he hasn’t seen hundreds of times before. Thirdly, when I asked the question I was hesitant to ask – about common complications with this surgery – I found out there is only a 1% chance of truly bad things happening. Obviously, this includes death, but it also includes brain damage and other severe situations – essentially, this 1% chance covers anything that would make Kiran worse off coming out of surgery than he was before going in. 1%. It is amazing to me, because he also mentioned that, from 1-10, this is a 10 as far as surgical complexity. This is the most complex surgery they do. The fact he could say that in one breath, and tell me it is only a 1% chance my precious baby will be worse off after this surgery than before…. Wow.
I feel so lucky to be here.
I have been really quite impressed with everyone we have encountered so far at the Lucile Packard Children’s Hospital at Stanford. Everyone is very approachable, kind, patient, and intelligent. They are good at what they do here. Kiran had the worst fit he has ever had during his entire echo (for those who don’t know, it was about a 45 minute ordeal) – and the tech doing the echo was able to power through and get all the necessary pictures in one shot! AND she complimented us for being great at helping keep him calm the best we could. Trust me – she was being gracious. He was inconsolable (and I didn’t blame him – what a long couple of days it has been!)
We did learn some exhausting news about his cardiac cath procedure tomorrow. We were told he was second case and would be starting around 12:30. He was moved to first case, so his cath will start at 8 am. This is wonderful news for him, because the fasting he has to do largely occurs overnight (no crabby, hangry baby during the day!)…but it means we have to be back at the hospital at 6:30 a.m. (We just left the hospital at 4 p.m. today so not much of a break). Also, is it their policy to keep cardiac cath patients overnight, so the earliest we will be discharged in Saturday morning. I made the assumption we would likely be discharged same day, because we were in Iowa City. Again, this is all really best for him…it will just be a very long day tomorrow. I look forward to the few days of quiet time with family and close friends before surgery day.
For those praying, sending good vibes, providing positive thoughts, meditating, or whatever way you are choosing to support us: I have a specific request: Please ask that it be possible for Kiran to have the full repair on his heart during this surgery. They will be addressing his MAPCAs (major aorto-pulmonary collateral arteries) – This is the main objective of the unifocalization surgery. Once they bring these arteries together to mimic the pulmonary arteries that didn’t form correctly, they will be testing the pressures. If the pressures are lower than 50, Dr. Hanley will perform the full repair on his heart. He will then have normal blood flow from heart to lungs and should have saturations at 100%! If, however, the pressures are too high (above 50), the full repair will have to wait. Dr. Hanley said oftentimes (I believe 90%) the full repair can be done in about two years. Still, this would mean Kiran’s energy level wouldn’t likely change much, so his development may continue to lag. We really hope for the pressures to be good, so we can move forward and address some of his other developmental delays.
We obviously still ask for prayers for peace, safety, steady hands…but add full repair to that list. This surgery has the potential to truly change Kiran’s life in significant ways. He will never be cured of his CHD – there will be at least one more open heart surgery to replace a valve even if we can do the full repair – but this will give him a pretty darn normal life. And that is beyond exciting.
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Our thoughts and prayers are with all of you. Xx