The short term goal for tomorrow is to get through the day with the minimum amount of disruption for Russell as possible. That has proven to be a significant challenge, and last year, despite our best efforts was an unmitigated disaster. We're trying to turn that around this year. For those who don't know what happened last year. Here is a link to my blogpost from a year ago and a description of what happened.
Russell's Heart Cath - 2015
Susan and I have tried to get a lot more information on how to manage Russell's fears and anxiety. This is challenging because Russell knows exactly what is coming and is quite knowledgeable in his own right.
Fortunately, we have a good team that has been very receptive to our concerns and have made many suggestions. We have input from mental health specialists who have conveyed some strategies for dealing with the anxiety leading up to the procedure but we also have spent some considerable time at our pre admit clinic discussing a comprehensive sedation plan. We had a good discussion about what happened last year and reviewed the chart and I think we have made some changes that should work better this time around.
The Challenges
There is a good deal of information available related to procedural pain pediatric patients. Lots of good strategies have been studied and have been proven to be very helpful. Reading some of the literature I wish we had some of this information years ago. However, the important thing to keep in mind is that is really important that you know your child and select strategies that you think have the best chances for success.
As an example, one of the strategies that many have become big proponents of is "numbing cream". The idea is to apply a cream to an area of skin to "numb" the area so that your child does not feel a needle insertion. Personally, I am not a fan of the product (for Russell). The creams used usually take quite a while to take effect, and my criticism is that it heightens the anxiety of the procedure by dragging out the process. Keep in mind, Russell knows exactly what is coming and he is also a little guy with a lot of anxiety. For him, the numbing cream is just as traumatic as the needle poke itself. The tried and true method with him has always been to get in and get out as fast and accurately as you can. Absolutely, do not drag out the process. I also know that some parents think using numbing cream is fantastic and have good results. This is the importance of knowing your own child and using what will have the best outcomes for them. My strategy may (and should) change for other children. For instance, using a numbing cream may be a useful strategy if we were talking about my daughter, Nicole. She has very little experience with any painful procedures and if we asked her I am sure she would be very receptive to using the cream. In fact our pediatrician has used several distraction techniques with her and they have all been reasonably effective. My point here is that you have to know you child and not be afraid to tell your health care providers what will and won't work.
The Plan
Our plan for tomorrow has actually been in place for a few days. We've spent a significant amount of effort discussing this with Russell. We are trying to a lot more work addressing his anxiety. It's been a challenge. He gets agitated when we talk about it. Occasionally, we get a question. Those are great opportunities to talk through the issues. We're trying to get him mentally prepared. We are acknowledging the process and his fears. These are real and we want him to be able to verbalize how he feels. We are also trying to reinforce his successes. He has an amazing knowledge and he has been through so many of these procedures. We reinforce these successes in which there have been many. The limited discussions that we have had we have definitely tried to keep him included in the process. He has a say on what happens. Any bit of control we can give him we will. I would have hoped we could have had some more input from Russell but we are very slowly working through his anxiety and we won't solve all of these issues in a couple of days. We hope that Russell has a sense that he has been included in the plan and the we will be executing "his" plan.
What Will We Do Different this Time?
Last year at this time, we thought we had a pretty good plan. It didn't go very well. Some of the things we will do differently this year has included some of the mental preparation as I have already discussed. This is what we will do at home to prepare. Much of what will happen tomorrow is the plan we developed with the anesthesiologist, at pre admit clinic. The input we have received has been really interesting. In the past, we had requested pre-sedation, (benzodiazipines) which has not been effective with managing any anxiety. We won't be doing that this time. No pokes will happen in day surgery. The IV will only be started in the operating room by the anesthesiologist. We are trying to greatly reduce the poking Russell would have to do before the procedure.
The other key strategy change this time around is that we have discussed taking our time. We will be in no hurry. If Russell is upset, we will take time to get him calm. Pinning him down to get something done will not be an option. In the past, when we got to the OR there seemed to be a rush to get things done and get him "put under." Not sure why. This time we will slow things down. We spend many hours waiting for Doctors and Nurses, I think it is only fair that they should wait for us every now and then.
Talking the Talk vs Walking the Walk
Tomorrow we will put all of the discussions and planning to the test. All of the theories and speculation don't mean anything if they aren't implemented. I've been fortunate to have had opportunities to discuss our experiences and what we thing works as it related to pain management and procedural pain. I've been lucky to have input into research projects on the subject. I guess tomorrow we'll find out if we know what we are talking about.
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