It was the night before the Heart Cath
and all through the house
not a creature was stirring
except for Russell:
who was killing zombies on Roblox.
Yes..tomorrow is Russell's Heart Catheterization. Not a big deal you might think. We've done this many times before, but with Russell, nothing is ever straight forward or simple. In the past, we have had some horrendous experiences. Anxiety stemming from severe medical trauma is nothing to ever be taken lightly.
It is a day surgical procedure to check coronaries and pressures in the heart. It's all part of the protocol that a child with a heart transplant has to endure. He has to undergo full anesthetic and the procedure itself takes a couple of hours. He is required to stay in hospital for 6 hours following the procedure - so we will have a very long day.
It seems simple... just a few hours...but it's not.
The biggest complication is that we are working with a 10 year old who is VERY aware of what is going on. He knows what is coming. He's done this before.
This process started several weeks ago as we always start with a visit to our pediatrician who has to do an assessment and forward this on to the cardiology clinic to ensure Russell is healthy and that nothing has changed that would prevent him from having the procedure. With driving and waiting this ends up killing half a day.
To try to manage Russell's fear and anxiety (which has been well earned) we have sought professional help. We are trying to prevent a melt down which could actually put Russell's safety at risk. Because we will have to do this procedure again we want to get to the point where Russell can cope better with this procedure.
We got some excellent advice and developed what I call his pain plan. I have listed it below. It is tailored to Russell's specific needs but I thought some of the ideas may be helpful, to other parents, so I thought it was worth posting.
When we went to the Pre Admit Clinic (PAC) on Friday. (Another half day encounter.) we presented the plan to our nurse, child life specialist, and our anesthesiologist. They were appreciative but none of them wanted to actually physically take the document. It was as if they might catch something, or possibly take some responsibility for what was contained in the document. In spite of the curious response we were able to discuss some of the concepts and the input was well received. It also sparked some good discussion. Mission accomplished.
The funny thing about the PAC is that the people we saw on Friday will not be the people we see tomorrow. We are depending on the notes in the chart that document our requests being read by the day surgery team. I'm not holding my breath.
It is likely that all of our discussion will have to be re-done tomorrow as any time we deviate from the standard protocol it touches off panic and confusion. Been there....done that.
The one component that no one thinks of is the stress that this puts on the parents. The thought of putting Russell through another experience like this sickens us. We know it is necessary. We know everyone will do their best...but we are so done with this. I'm wondering if it is actually getting harder to endure. We are completely finished with seeing our son poked and prodded. So traumatized by this that it is definitely taking its toll on us. The net effect means parents who are compromised in their role as advocates and caregivers for their son. It is a vicious circle.
So tomorrow, we will suck it up, and get it done. Just like we always have.
Until next time.
Gosh. Good luck! Thank you for sharing your pain plan. It's fantastic.ReplyDelete
Thanks Donna, I've learned from the best. People like you who have blazed the trail.Delete