They were extremely discouraged to find Ethan the star of the cardiac valve failure show again in less than two years.
Tell me about it.
None of them felt any surgical intervention should be done on Ethan. Rather, the general consensus was to continue medical management until there was no other choice but surgical intervention.
Dr Kaine's argument with them was that we don't have the time or the luxury to wait, and talked them into putting him on the schedule for a PV replacement anytime after August 1st. Being that we have a follow up with him on July 31st. And if we wait until then and there is no improvement, we will have lost some good months for scheduling and would be looking into fall. If there is great improvement, we can always cancel, and Dr Kaine said he would love for that to happen and he would happily eat his words, but he's not optimistic.
Here's the kicker-the surgeons would not buy off on the Hybrid Melody approach which would keep E off cardiopulmonary bypass. They don't feel they have enough, well actually any experience with this approach and don't want to risk it. Dr K said that they felt that even if he still wanted to use the Melody Valve, they would do a traditional open-chest approach anyway, so why not just do the same surgery they did two years ago. It was also felt that they don't have enough success with the Melody Valve, or stent valves, here yet either to use it on Ethan, so just stick with another cadaver valve.
Ahem.
I thanked Dr K for his support and care of Ethan since he was born, and told him it was no reflection on the decision or the care at Mercy, but I felt it was time to pursue all our options and that Ethan's records had already been sent to Boston and Philly.
His next statement kind of surprised me.
"Rest easy, Kari. There are no hard feelings with you seeking second and third opinions. The more eyes we have on Ethan with the experience those places have in regard to valve replacements, the better".
Whew. I almost cried. I don't know why that was so hard to do.
Because we've admired this man for 9 years and put the life of our child in his hands.
Because we respect the decisions he's made in the best interest of our little bald guy for those nine years and didn't want to offend him.
Because I honestly can't imagine traveling somewhere else where they don't know our guy and feel like we are starting all over.
Because Mercy is our second home.
And I wanted the quick and dirty solution, the easy answer, the road most traveled.
But I ultimately knew they couldn't or wouldn't be able to offer me the approach I wanted, and saying those words made it all so much more real.
That's part of why it was so hard.
But a dear, sweet lady I spoke with last week said it best.
I wanted his approval, his blessing.
And I probably wasn't going to get it.
And if I did, the answer I was looking for was in that approval.
And deep down, in my heart of hearts, I already knew what the answer was going to be.
"And I am happy to help get him there if needed."
At the end of the day, approval or not, we are going to get all our options for Ethan and do the best we can for him.
Even if it is the road less traveled.
With that said, Ethan's records are in Boston and Philly now. Both places called today for more records, and those were overnighted tonight-thanks to the help of Jennifer from Mercy's Medical Records department! I should be hearing from them both by the end of this week, or early next week.
Immunology called me today, after getting a copy of E's latest inpatient notes. And we had a very interesting convo. They are concerned that the repeat valve failure could be related to his CVID (Common Variable Immune Deficiency) and want some labs drawn to check his IgG before anyone starts cutting on him.
Finally, someone is looking for a reason for the failure. So, maybe, we don't do this a third time in two more years.
And as if we didn't have enough going on, we are currently building a house. We just signed on the dotted line Tuesday after meeting with the builder. The home we live in now was a lease-to-purchase option, and the owners are pushing us to buy. We really need to have Ethan's bedroom on the main level, and this two story ain't cutting it with my bum knee and 15 curved stairs to get him from his bedroom to the main level. Our new house is a Reverse Story and a Half with his and our bedroom on the main level with the kitchen, living room, dining room and laundry. And only two steps to get him in the house. And the awesome builder we are using is putting a wider door from the garage to the house for E's wheelchair, and a small ramp in the garage so we don't even have to carry him up or down those two steps-we can wheel him!! The foundation is poured, but it won't be done until October, so we have lots to keep us busy this summer!
Nice huh? I will keep you posted with pics as it progresses!
Parker is worn slick from football camp this week, he was in bed by 7pm tonight. We are so thrilled to see how excited he has been about it, and can't wait to watch him play. He also has a birthday coming up in July, oh dear, he will be 14. Where did the time go??
Best of luck to my nephew Taylor in his Powerhouse Baseball tourney in St Louis this weekend! Safe travels!
And my thoughts and prayers with a fellow Ch18 family in Utah whose gorgeous little Ring 18 Deak is having a major, major hip surgery tomorrow-basically a bilateral hip replacement. His Mom Jenny is my online friend and bald kid supporter. Please send her your strong vibes tomorrow and in the days following as Deak recovers.
www.jennyandblair.blogspot.com
We love you Howes! Thinking of you!!
Leaving you all with a fave pic of ours-Ethan's school pic from last year.
He wasn't smiling so his teacher said to him "you better smile you bad, bad boy" and he cracked up.
We love that silly smile. Thanks for letting us share him with you all.
No comments:
Post a Comment