Two days ago, after much pestering our Children's hospital that we still did not have a date for Isaiah's surgery, we were able to get an answer.....First he will still be needing a Cardiac MRI to measure and see how much scarring has taken place in his heart from it being sick. They want a starting point before his surgeries and to see if anything more serious is going on (as if it isn't serious enough?) Thankfully, they were able to schedule it at the same exact time that Elliana is having her MRI on September 17th. The things that doctors can pull. It took us 6 weeks prior to get that early time for her and they were able to find a place for him in less than 2 weeks. That is okay, I am not complaining. So Jay will stay with Isaiah and I will stay with Elliana. It should be interesting. Then, because Jay doesn't have much sick or vacation on the books he will go back to work and I will drive the two littles home. I do plan to bring a teen helper though.
Then for surgery, he will have a big pre-op day on October 9th, which includes at least lab work, xrays, social worker visits, tour of where he will be, and a meeting with the doctors. Then the following morning early on October 10th, we have a 6 AM show time for a 7:30 AM scheduled surgery. The surgery is scheduled for about 6 hours, although that is just a guesstimate. It could be less or it could be longer.
He will have the catheterization done first, in the operating room. They will balloon and stent that left pulmonary artery that is too narrow. They said they will likely have to do this in stages, so this is the first stage. Not sure how many or how far apart that will have to take place, but I imagine he will be monitored closely for a long time.
Following the cath, they will do the open heart surgery to replace the leaky valve. That too will require multiple replacements as he grows, since it does not grow with his heart.
They said we should be prepared for him to be in the hospital for about a week. We are still trying to decide all the logistics in how our family is going to manage that. Jay and I will both be there for surgery day. I will stay the first night, at least. Then we will somehow decide how to take turns. A lot is going to depend on the needs of the other children, especially little Mama's girl, Miss Ellie. Mama's heart wants and needs to be in two places. However, with that impossibility, something is going to have to give. I know God will lead us through those steps. I am praying too that he stays only 5 days which was suggested might be a possibility.
We are also talking through the possibility of getting two hotels rooms by across the street from the hospital. Our insurance will cover one room, Jay has a free night for another one at least, through bonus points. Just not sure if we can swing several more nights in a hotel. But if we did this, we could all be closer, which would make for easier switches at the hospital. (The hospital is about 75-90 minute drive, depending on traffic times, which can be bad.) Isaiah could see all his siblings and them him. We also thought Jay could take the kids to do some interesting and fun things around the city instead of staying home, which will make the time go faster for them and a more enjoyable, memorable time.
So that is the way it looks as of now. Isaiah has a slight cold and cough this week. It is obvious his heart/lungs are struggling a bit more, but he is holding up. Our desire was to have this surgery done with him completely healed before viral and flu season hits. I am not sure that will be the case for this date, but God knows. I am praying against him getting sick, especially at surgery, as they will postpone the surgery if he isn't well. Please also pray for Isaiah to be free from extreme fear. He has been opening up so much to all of us, even a bit around strangers. His language is exploding and I so don't want this to set him back too much. I know it might and I am okay with that, but he is in this type of thing for the long haul, poor precious boy. Thank you for keeping him in your prayers.
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