I’ve been avoiding this. Not that it’s “bad” but just typing it out makes it more real.
We saw Dr Heller on June 26. AGAIN, there was an accident on 84 so we tried going 91 but 691 was packed. Anyway we got there in time.
Olivia’s doing great. She weighs 33 lbs (15.4kg) and was 40″ tall. (for the record, Maddie was 53lbs and 48″ tall). Oxygen was 95% which Dr. Heller said is like 100% for Olivia!!!
EKG was great.
When Dr. Heller listened to her heart she said she heard the murmur – which is something she hadn’t heard up until now. We know there’s backflow (regurgitation) but if she can hear it? Can’t be good, right?
So we headed to the U/S room and the backflow is “significant” or in my words “really BAD”. She didn’t have to tell me it was bad – I could TELL just by looking at it. It’s increased GREATLY since we last saw her 3 months ago.
Dr. Heller looked me in the eye and told me to not worry about it. It will be something she lives with for a long time and this is normal. I asked about how they could replace the valve when her heart is so unique – she said “We would REPAIR it, not replace it”. I’m not supposed to worry about it but … yeah right. Especially with Dr. Mello leaving. Did I mention this before? Probably not and I’ll cover that in a minute…
We’re going to treat this regurgitation with medication (currently on – no changes). So I’m not supposed to worry about it. Again, yeah RIGHT.
The only good thing is that she wants to see us in 6 months so if she was worried, we would be back sooner, right?
OK, now on to Dr. Mello. I had Ladies Night at my house in mid-June. It’s our neighborhood group of ladies who all get together. There’s 20 invited and usually 10 – 13 show up. GREAT group. So my neighbor Ann-Marie works at the hospital. We’re out on the deck and she says casually to me “That’s something about Dr. Mello leaving, huh?” Picture me grasping my chest – I was THAT shocked. I immediately called Arnie outside. The ladies were very much “it’s ok – Olivia’s done” but my immediate reaction is what about all the other kids who haven’t gotten their fontan? Including our best buddy Lily?
I emailed Dr. Heller the next morning (on a Saturday) and flat out asked WHAT was going on. I started out with “Dear Felice, (and you know I never call you Felice, so you know I know…)”. Before noon the phone rang and it was Dr. Heller. She called to calm me and reassure me. Explained that this wasn’t a shock and had been rumored to be happening for about 6 months. She said “why do you think I wanted you to get Olivia’s surgery done sooner than later?” (God I love this woman!). Because as devastating as this loss is for us, it would be 200% worse if we were still pre-Fontan. We chatted for a good 20 minutes and she promised me they’re going to find someone to replace Dr. Mello. She did say that she will not have anyone operate on any of her patients that she wouldn’t have operate on her own child. Which is reassuring because I’m worried about Lily.
Speaking of Lily, I told Dr. Heller that she HAD to tell Laura (Lily’s mom) sooner than later – because I hated “keeping” this from her and she would hear it from someone else otherwise. Dr. Heller said she was dreading telling Laura because she knew how devastated she would be.
After getting off the phone, I broke down and sobbed. Sobbed because surgeons moving around may be “common” I felt this was a huge blow to the program at CCMC. Plus as silly as this seems, I want to be able to say “Olivia had her fontan at CCMC” without clarifying that it was when Dr. Mello was still here. The best way to describe it is when a sports star breaks a record and then there’s an asterisks next to their name in the record book due to a technicality, ie. 3/24/08, Olivia, Fontan, CCMC* * Performed by Dr. Mello.
This is getting long so I’ll update on the girls in a separate post.