the song “praise God from whom all blessings flow” has been stuck in my head since 3pm yesterday. i’ll start right out and say that the appointment did no go how we had prepared ourselves for it to go. at all.
my big strong man at the doctor
we started off talking with our surgeon who is the head of pediatric cardiology about otto’s condition. joe put it best, it was like drinking from a fire hose. so much information at one time and while your brain is trying to process that you are also trying to decipher how bad his condition is. the first part of the meeting was about the avsd (the actual hole in the heart) and the doctor thinks that will be a very routine fix. otto’s condition with the avsd is on the moderate scale and should not present any future problems moving forward after surgery.
we then got into the leaky mitral valve which is the reason we were back at the hospital so soon. they believe the mitral valve is the main cause of his reflux, heavy breathing, slow weight gain etc. all these we confirmed (and already had suspected were the early signs of heart failure) so here we are getting things taken care of.
our initial consultation we were told that otto’s leak was on the moderate to severe side (still is) but that it would get a patch repair and then would need a replacement later on in life. yesterday when we were going over otto’s ultrasounds and conditions the surgeon found that the left side of ottos valve was longer than it should be and the right side was shorter than it should be. typically the valve cases are the opposite sides and otto is unusual. i told the surgeon that he could use otto in his textbook as weird cases. the good news in all of this is that this weird anatomy could work in otto’s favor. the surgeon said he is pretty confident that we can get away with one maybe two surgeries to repair the valve instead of replace. this is GREAT NEWS. our goal was to avoid a replacement as much as possible. this gives us hope. our surgeon is “optimistic” about it. which is great. there is still about a 1 in 10 chance that otto will need a replacement but i like that the other 9/10 are in our favor.
this was just not what we were expecting to hear. i feel for the first time we got alternate news in otto’s favor. prayers were answered friends.
we also received a date for otto’s surgery of october 4. i’m nervous and anxious but i am going forward knowing that this will hopefully make otto better and this meeting gives me so much more comfort that we are going to go there and fix this for our son.
we are looking at a minimum of a week in the PICU if all goes according to plan. if he has a small leak still after surgery (likely) they’ll keep us there longer to monitor. it’s all based on how he does coming out of surgery.
i just want to show you what i asked you to pray for us yesterday
- a good meeting with the doctor – help us feel comfortable and confident with the surgeon and his plan
- optimistic meeting – praying that otto’s condition is not as bad as he originally though, otto is showing some improvement
- the ability to make the right decisions for otto.
- a date of the surgery
GOD ANSWERS PRAYERS.
thank you thank you thank you.
we are now beginning prep for surgery. we need to keep otto strong and healthy. keep mom and dad sane and rested. and keep praying that the surgeon fixes our little otto.
this is the best way to start the weekend.