I have been contemplating this post for the last few hours, and to be honest I am finding it difficult to not become emotional.  I had planned on sharing a whole bunch of adorable pictures of Jax, but the carelessness and insensitive actions of one person made that impossible.  With Jessica’s permission, I am sharing this experience in hopes that it will provide some perspective and understanding as to why awareness and education are so vital…not only to the general public, but to the medical community as well.

Jackson was scheduled to have a very routine procedure done today to get a biopsy of his lungs.  It was supposed to take about 25-30 minutes.  I was blessed to be with him during his pre-op and snuggle with him a bit.  He was in a good mood and as precious as ever.

As he and Jessica left for surgery, we were very hopeful that there would be no complications and we would be back on the BMT floor in no time.  Unfortunately that was not the case.  After his procedure, I was able to go back into the PACU to see him during his recovery.  Jess was taking care of some things and so it was just Grammy and I for a short time.  He looked so sweet, as if her were sleeping.  The nurse was trying desperately to get his O2 stats when the anesthesiologist came in and abruptly told her to put the clamp on his ear.  Grammy and I both told him repeatedly that he could not have that because it would damage the skin on his ears.  This did not seem to affect the doctor whatsoever; he continued to insist upon it.  I found him to be completely insensitive to Jax’s condition and more focused on proper procedure.  Well, with an EB baby, you have to make exceptions.

When Jess came back she was clearly frustrated.  As we worked together to get  his cannula in place, he proceeded to tell the nurse that Jackson could not receive pain meds while he was in recovery.  Jessica had to explain that Jax needed his medications, again this was not an ordinary situation.  Jax receives morphine every four hours to control the pain caused by his EB.  The doctor was almost aloof and then finally agreed.

What we did not realize at the time was that there was a bigger problem that was about to surface.  Something I was not quite prepared for and something that shocked me.  The anesthesiologist was not careful and he was too rough with Jackson.  Because of his actions, Jax lost all of the skin on the back of his neck.  The doctor’s response completely lacked accountability.  He left the room and never came back.

This is not acceptable and you may be asking how this could happen, especially at a children’s hospital where they are trying to cure EB.  The answer is plain and simple.  Epidermolysis Bullosa is only a small facet of what this hospital does, they have an immense staff and not all of them know EB.  This doctor was not experienced with EB, he lacked the knowledge and the understanding to provide the appropriate care.  He simply just did not know and I am sure he thought he was just doing his job.

I have heard stories like this all to often and it is why we need to spread awareness and push for our medical facilities to educate their staff on what EB is and how to properly care for an EB child.  The other thing that I cannot stress enough is that EB parents usually know best and these facilities and their staff need to allow the parents to guide them in properly caring for their children.

I think we tend to take for granted that the doctors know best, I know I do.  Today I learned first hand that it is not always the case.  Please keep Jax in your prayers as well as Jessica.  This is a long road with many challenges.  There will no doubt be many more instances where she will have to fight for Jax’s best interests and his safety.  I hope we can all show her that she has our support.

Thank you!

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