It’s hard for us to believe that we are almost two months post-op from our son’s second open heart surgery.
Our son is doing really well and even returned to school this week after being out for two months.
(Leaving the hospital)
For our son’s first surgery we took him in thinking he “just” had a heart condition and five weeks, two hospitals, three surgeries (original open heart, chest re-opened for draining, and g-tube placement) a devastating diagnosis and expected prognosis later, we walked out as parents of a “severely disabled” child.
The only way I can describe that experience was traumatic.
Our son was in critical condition after his first surgery and stayed in the ICU for three weeks and then the general floor for two more weeks.
One week in he was transferred from the Children’s hospital where his surgery took place to the hospital our insurance was through.
A couple of days after being at the new hospital his chromosome test came back saying he had Miller Dieker Syndrome.
It’s such a rare diagnosis it sent all the different specialities and all the different doctors treating him into a frenzy.
One doctor would come into his room and tell us one thing and then half an hour later another doctor would come in and tell us something completely different.
Only two of the about fifteen or so doctors out of the attending physicians and residents who saw him during that hospital stay had ever treated a child with Miller Dieker Syndrome and our son was presenting completely different.
Even though he presented different they still wanted to treat the diagnosis and not his symptoms.
They wanted him on seizure meds even though he didn’t have seizures, and said he was having them and we were missing them (we refused and he wasn’t), they wanted him to have his stomach wrapped around his esophagus and said he was aspirating and that if we didn’t allow them to he would have multiple bouts of aspiration pneumonia, (we refused and he hasn’t), and they gave us such a bleak outlook saying that we thought the worst was over referring to his heart surgery but really the worst was just beginning referring to our life as his parents (we refused to give up hope and they were completely wrong).
I know I already said it but I just have no other way to describe it but traumatic.
It was really hard because we had a really adverse relationship with the people treating our child and it was such a fight and it took place while we were trying to deal with the news we had just received about our son’s life.
“Diagnosis Day” as it’s referred to in the special needs community is always hard and one you remember.
I think because our “Diagnosis Day” was drawn out over weeks in the hospital and attached to our son’s open heart surgery that this time when we learned he was already in need of another open heart surgery the reality of it hit us really hard and we were pretty anxious going into it.
We were prepping for a fight because that was all we knew of when your child goes in for open heart surgery.
I am so glad this time was so so different then the first.
And not just because our son did so much better after his surgery and because we didn’t receive any life changing diagnosis, but just the way the staff at the hospital really listened to us as parents and valued and implemented our input so there was no fight.
I honestly think the first go around would have been way less traumatic, even with our son struggling and learning of his diagnosis, had the team that time had the philosophy of the team this time.
We truly feel that our son received incredibly good care this go around and so instead of walking away this time traumatized, we are walking away from it with some healing ourselves and thanking God for the experience because even though it was hard on our son and hard to see him go through it, we actually see it as a positive and are so grateful because our son got exactly what he needed for his heart to be healthy and nothing less.