Blog · April 1, 2013


The more I live, the more I realize I am not living a normal life. Far from it.

Clearly I have no idea what “normal” even is anymore. What is normal? Is anyone’s life “normal” anyway? It does seem as if many are living an “ideal life”, so to me, that spells normal, everyone around them or in their family is healthy and happy, they have good jobs and perhaps they should be happy but many, unfortunately, aren’t. These unfortunate souls apparently have no idea how lucky they are because all they do is complain about the most trivial things ever, and when they don’t complain about trivial stuff, they become almost mean, demonizing the poor, the weak, the handicapped. Do they even know how kids grow up in the slums? Do they know their stories? Do they know of all the children and adults that are abandoned by society because they are ill or handicapped, or are they just so bored with their ‘happy’ lives that they have to invent things to complain about? Sometimes I think these types of individuals are in dire need of a reality check, how about going to talk to someone in a homeless shelter? Volunteer at a soup kitchen? Visit a Children’s Hospital?

Maybe I am jealous. I wish I had all this time to complain about other people’s unlucky situations and pass judgement on them. I don’t have that luxury. I live each day on the edge, almost waiting for the other shoe to fall. It’s not a happy feeling, far from it.

This past week I had to take my son Nicky to have his hydrotherapy which is supposed to take place twice a year, but by the time the insurance approves it it’s more like once every 9 months or so. This is basically a good bath/bandage change which gives the Doctors an opportunity to look at his wounds, checking for infections and cancer. Yes, cancer.
Up until Nicky was about 12 or so, I used to do this at home every 3rd day, but it became so painful for Nicky I had to stop and revise the way we changed bandages. This ordeal needed to be less intense, and that’s why we decided to do partial bandage changes every day, one arm one day, the other one the next and then legs the third day. Of course this was before I put my foot down and requested… no, DEMANDED stronger pain meds. After all, it’s not like I give Nicky pain meds 24/7, I only give them to him during bandage changes, and I still only give him something mild, like ibuprofin if we know the area we are changing is doing good. Sometimes though he needs something super strong and that’s how I was finally able to get the Dr to give Nicky a prescription for morphine. It wasn’t easy. I felt like I won a MAJOR war when we got a prescription for that. Good Lord!

Nicky's HydroTherapy, photo courtesy of Jodi Champagne

Nicky’s HydroTherapy, photo courtesy of Jodi Champagne

Nicky has been doing these hydrotherapies now for several years and our great friend Jodi, who is doing a photographic documentary of Nicky’s life with EB, decided to come up and document this for us this time for the book ‘Courage Under Wraps’ due out in September. When she posted this photo on the right, I was overwhelmed with words of support and prayers, but I was also a bit taken aback by some comments. While these comments were rare, I was still upset by them. Clearly, I should not have read any of them. The comments that got to me were those of people saying things like: “Why aren’t they giving him pain medication?” (why are they assuming we didn’t?) or “You need to give this child Morphine!” (again, why are you assuming we didn’t?) or the best one “OMG, Morphine, that is awful!” (we can’t win, can we?). The one that I got a few times actually that needed a lengthy explanation from me and from Jodi was why we weren’t sedating him. Oh Dear… Sedation.

OK, I will start this by saying that sedation was never offered to us, but we never considered it an option anyway. Maybe this works in other hospitals for EB patients, but Nicky would have turned it down cold if it had been offered anyway. It’s always interesting how what works for one patient is crazy talk to another. I wrote a whole blog on about this issue alone. Remember, every EB patient is different!
I wrote that blog, BTW, as basically a retaliation to those that kept telling me I was doing things ‘wrong’ (such as “overbandaging” him and other nonsense) and how dare I do this and that to Nicky (surgery to his left hand was the latest) when Nicky himself makes the decisions and how dare they give advice without even knowing Nicky at all, don’t they know every EB patient is different?
At any rate, Nicky would not dream of doing hydrotherapy under anesthesia. For one, I am not sure how they can accomplish giving anyone a bath while they are asleep… think about it: they would need to put an IV on him (Nicky’s worst nightmare), and they would need to attach him to breathing tubes and machines to monitor him. Nicky is also adamant in talking to the Doctors about the wounds, remember, he’s not 6, he’s 16 and well aware of what’s going on. And… believe me, we do give him plenty of pain meds, I bring out the big guns for this, morphine.

Nicky is very emotional and told me that the reason he was crying mostly during this was not so much for pain but the fact that he felt out of control. He is used to just me doing it, I give him time and space to take off bandages at his speed and liking, but being in a situation where 5 nurses and 2 doctors were taking off stuff at light speed and picking on the wounds was upsetting to him and understandably so. Once he was all done I completely re-wrapped him, just so he could be more at ease. At this point he calmed down, he was OK and the morphine took the edge off for hours afterwards. He felt so good in fact he was OK to stop by to see the Easter Bunny on our way home.
Honestly, considering the risks of being put under anesthesia and how bad he feels afterwards when he wakes up, we have no qualms about our decision, err… his decision. Nicky was telling me just last night how he hates being under anesthesia, needing to get IVs etc and how much he hates that feeling of being groggy and out of it he is for the rest of the day. He would never want to do that unless it was for a surgery. So, for HIM, sedation is actually the cruel alternative. For HIM. And that’s all I know, what works for HIM. I would not dream of telling someone else what to do.

Clearly, the only thing I truly know, is my son. My Angel son. I love you Nicky!