lovemy3
05-18-2012, 08:37 AM
I am sure this is going to sound like a crazy rant b/c quite honestly I feel crazy right now.
Jackson is scheduled to go to CHOP for a routine bronch on Monday. The only extra thing they will do is remove a granuloma up above his trach so we can try to start using the PMV.
We wanted it last fall, they said no, based on his extreme secretions they didn't think it was safe. This March at his airway appointment they said yes, it's time, lets do a bronch, get it out, and give him the PMV. Scheduled an OR slot for April and had to cancel because he woke up the morning of with the stomach flu. Rescheduled to Monday.
Last weekend he had a cold and it's gotten better each day, he isn't coughing as much and he sounds pretty good, no fever, BUT in the mornings he has thick green snot coming out of his nose. He is happy, playing fine, but it's that green color that has me concerned.
This morning CHOP calls and there is an emergency reconstruction that has to take place Monday and Dr. Javia (our surgeon) has to be on the team. They say we can either reschedule into June or use a different surgeon.
So my husband and I talk and decide to go forward with a different surgeon. We aren't talking about decann anytime soon, it's a standard bronch, we just want that granuloma out. Obviously we will talk before Jackson goes back to ensure we are on the same page and he will have Dr. Javia's notes/images from previous bronchs. It's not like we chose Dr. Javia, he was assigned to us in the beginning of our stay.
I mention this to our primary nurse this morning and she says "Well I think it just needs to be canceled in general and I have thought it all week. He has nasal congestion". And I just kinda lost it and burst out crying and selfishly said "I don't want to reschedule again, the mental and physical work that goes into admitting him & watching him go through this is too much, I can't do it again". She says "It's not about you, it's him Melissa". That's a whole other rant that I will keep to myself but everyone can imagine how I felt about it.
So help me please...is everything adding up to the fact that I should reschedule? I don't care so much about a different surgeon, it's a new set of eyes on him with new ideas maybe. But I don't want to get so caught up in my own agenda that I discount that green mucus we are seeing in the morning. And my annoyance at that nurse.
I feel like if we wait until he is perfect we will wait forever. It's a bronch, we aren't anywhere near decann, and I am so very desperate for him to start using that speaking valve and to hear his little voice again. But b/c it's just a bronch, am I putting him at risk by putting him under when he has some congestion?
Thoughts appreciated....
Jackson is scheduled to go to CHOP for a routine bronch on Monday. The only extra thing they will do is remove a granuloma up above his trach so we can try to start using the PMV.
We wanted it last fall, they said no, based on his extreme secretions they didn't think it was safe. This March at his airway appointment they said yes, it's time, lets do a bronch, get it out, and give him the PMV. Scheduled an OR slot for April and had to cancel because he woke up the morning of with the stomach flu. Rescheduled to Monday.
Last weekend he had a cold and it's gotten better each day, he isn't coughing as much and he sounds pretty good, no fever, BUT in the mornings he has thick green snot coming out of his nose. He is happy, playing fine, but it's that green color that has me concerned.
This morning CHOP calls and there is an emergency reconstruction that has to take place Monday and Dr. Javia (our surgeon) has to be on the team. They say we can either reschedule into June or use a different surgeon.
So my husband and I talk and decide to go forward with a different surgeon. We aren't talking about decann anytime soon, it's a standard bronch, we just want that granuloma out. Obviously we will talk before Jackson goes back to ensure we are on the same page and he will have Dr. Javia's notes/images from previous bronchs. It's not like we chose Dr. Javia, he was assigned to us in the beginning of our stay.
I mention this to our primary nurse this morning and she says "Well I think it just needs to be canceled in general and I have thought it all week. He has nasal congestion". And I just kinda lost it and burst out crying and selfishly said "I don't want to reschedule again, the mental and physical work that goes into admitting him & watching him go through this is too much, I can't do it again". She says "It's not about you, it's him Melissa". That's a whole other rant that I will keep to myself but everyone can imagine how I felt about it.
So help me please...is everything adding up to the fact that I should reschedule? I don't care so much about a different surgeon, it's a new set of eyes on him with new ideas maybe. But I don't want to get so caught up in my own agenda that I discount that green mucus we are seeing in the morning. And my annoyance at that nurse.
I feel like if we wait until he is perfect we will wait forever. It's a bronch, we aren't anywhere near decann, and I am so very desperate for him to start using that speaking valve and to hear his little voice again. But b/c it's just a bronch, am I putting him at risk by putting him under when he has some congestion?
Thoughts appreciated....