frustrated mom rant…

Isaac saw Dr. Preciado this morning, and the report was that his airway is “awesome”. Dr. Preciado was very confident that Isaac is ready to be capped, we were too. Unfortunately, Isaac was left to sit in the ICU all day, begging to go outside…. not being capped. A resident did come to cap him about 8 hours after he got there, she broke the cardinal capping rule and capped him while he slept – he woke up in a panic and failed that trial.
As the night went on there was confusion as to whether or not capping could be attempted again by the ICU staff, in the middle of this Isaac was calling me crying and begging to come home….. more heartbreaking than I’ve ever seen him. I broke down and emailed Dr. Preciado with my frustration, he called and gave his blessing to try again – Isaac failed again. We think at this point he panics when he sees the “cap” coming. It’s psychological. He could be experiencing some airway swelling, Dr. Preciado said if he goes home uncapped this weekend he’ll bring him back in a week and do it again without a bronch first – just in case it’s swelling.
Frustrated and disappointed doesn’t explain it at this point. First – we LOVE Dr. Precaido, he has done amazing work on Isaac. We just tend to feel incredibly deserted when he leaves for the day and we are left with such little information as to how to proceed. Almost every time Isaac has been inpatient I end up emailing Dr. P after hours so he can call the ICU with directions. We are spoiled by so many of Isaac’s other doctors, it’s tough.
Then there are the “why Isaac” moments that come out of nowhere. I haven’t had a night like this in years – hours of tears. I know I should be grateful all of the time that he is alive and as healthy as he is – I will always know that. Sometimes I am mad though, why does my baby have to be the strong one? The one that shows us all what strength is? Why can’t he just be friends with that kid? Why can’t we just read about somebody else’s little boy going through all of this? Having my sweet boy beg me to bring him home tonight opened up a flood of feelings that I haven’t had in a long time.
We have decided that if he is not successful tomorrow morning and comes home that we will try capping at home (even though we haven’t been given permission). We’re kind of on our own, even in the PICU. In order to avoid the psychological effects of the capping Isaac is used to we are going to try putting tape over the speaking valve that he is so very used to.
He CAN do this, but it has to be right for him. He has been through too much, and not had enough control – if we can do this on his terms it might make a difference. We are willing to take him back for a direct PICU admit to try again in a few weeks, if there is a definite plan for the visit. Hopefully our at home prep will make a difference.
After the tears and feelings of frustration I know we are blessed, in so many ways. Isaac is ok and will continue to amaze us….

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2 thoughts on “frustrated mom rant…

  1. Can’t ya just “pilfer” a cap??? haha..I don’t blame you one will be right there watching him…you can talk him through it….he’s a smart kid…..

    Sorry for the tears…but I bet you needed them anyway….

    Love you to and the boys

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