we have a plan

this week has been a total and complete roller coaster of emotions, plan, doctors etc. we have seriously had appointments every single day for the otter both at home and at helen devos. the biggest one was with the cardiologist on tuesday morning. otto had his echocardiogram (an ultrasound on his heart) and his EKG. we had our follow up with our cardiologist after the tests and had a surprising conversation.

despite otto’s progress with gaining weight his breathing is still harsh and his case was presented at the wednesday meeting of the minds at the hospital. the full recap of that appointment is here. our doctor was going to call us thursday morning to discuss the results but graciously called us wednesday night and i missed the call. he left us a lengthy voicemail of the discussion. basically saying they are wanting to get to work on otto sooner rather than later (4-6 weeks). they do not feel they will be able to do a permanent repair to the valve due to the amount of leakage (main source of otto’s issues). they think they can do a good enough repair to get otto big enough for a few years until he will need a valve replacement.

this was some pretty devastating news. not only because it’s pretty much a guarantee for two surgeries but we really wanted to avoid his worst case scenario which is an artificial valve replacement. this will require pretty much a life time of medications as well as potential for even more life long surgeries. that news hit pretty hard and joe and i both just sat home kind of numb. very numb actually. the kind of numb where you wake up the next morning and cant remember why your eyes are so puffy and then you slowly start to remember the conversations from the previous night. our doctor was able to call us back in the afternoon to answer some further questions but basically confirming what he explained last night. however there is a small small chance that they could get into surgery and the valve could look different than they thought (good or bad). there is a small small chance they can just repair it after all. i’m not being unrealistic in my expectations but you can best believe i am praying for a miracle.

we move forward next week with meeting with the surgical team to discuss and plan his surgery. we are then going to get a second opinion from another children’s hospital since this is a very different route than we had initially anticipated. thank you so much for the prayers. we have a plan now we just still have room for a miracle.

 

Comments

  1. Jane VandePol says:

    My niece faced the same decisions 16 years ago. They did the repair knowing more surgeries would be in her future. Surprise, the surgery was enough to redirect heart pressure and the healing was complete without any further surgeries. There daughter is now a healthy active 16 year old ! Remember , I know the surgery is serious but, Doc’s now days have to present the worst case scenario. God is in control!

  2. I love what Jane said in the comments! I’m going to pray that Otto will have those results. Yes we pray for his best will to be done and he also tells us to pray the desires of our hearts!❤️❤️❤️

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