I will try to update this blog on Nicky every now and again, and I felt it was important to start now because, even though he’s finally improving greatly from his 6 months ordeal, there are things that have deteriorated from him spending a significant amount of time not being able to move or eat. As I am a writer, I wanted to also make sense of it all from a mother’s perspective.
One of the main reasons why all of this happened in the first place and it took so long to get things resolved is because Nicky, being 22, means he can no longer see all the Doctors that took care of him when he was a child. Considering how freaking RARE RDEB is, everyone is just at a loss on how to help, that’s where frustration and a million phone calls come into place. “I will MAKE THEM understand”, is always my mantra and the bottom line. I can and will escalate, I have no problem with it.
For those that have stumbled upon this blog for the first time, let me explain Nicky’s condition for a moment.
Nicky was diagnosed shortly after his birth with Epidermolysis bullosa, the Recessive Dystrophic form. EB is a group of genetic conditions that cause the skin to be very fragile and to blister easily. Blisters and skin erosions form in response to minor injury or friction, such as rubbing or scratching. Recessive Dystrophic epidermolysis bullosa (RDEB) is one of the major forms of epidermolysis bullosa. The signs and symptoms of this condition vary widely among affected individuals. In mild cases, blistering may primarily affect the hands, feet, knees, and elbows. Severe cases of this condition involve widespread blistering that can lead to disability, disfigurement, and other serious medical problems.
One of these problems has been walking. Walking for Nicky has always been a challenge. While he could handle it OK while he was younger, time and wounds made the skin at the bottom of his feet so fragile he’s scared to even try nowadays. Just transferring causes blood blisters and damage that takes weeks to heal. If it heals, that is. It’s hard to explain to the Doctors this. They just don’t understand. They see other “walking” EB patient’s feet, which can and often are much worse than his and they continually push Nicky to walk, which makes him very upset and make him cry. I don’t know why other RDEB patients can walk and Nicky can’t. Every EB patient is so different. Is there a difference of pain threshold? A difference in personality? I don’t know. I sure am never going to force Nicky to do something he flatly refuses to do. It is what it is. I am just here to support him. Since the 6 months he’s spent in the hospital, he’s having EVEN MORE trouble transferring. We tried and were unable to get a weight on him yesterday at the Doctor’s Office because of his feet. In the recent past he’s been able, although with strain, to stand up and do it. It was impossible for him to do that yesterday. Transferring was hard before, now it takes forever. As a mom, who learned patience from him, I have to take that in consideration when I take him anywhere and now I will have to allow even more time for it. He will get hurt transferring, he will be upset. That’s why I try not to take him anywhere. It’s just not worth it unless absolutely necessary. The thing about Nicky, is that he remains the sweetest boy ever. As he’s constantly in pain, unselfishly, he frequently apologizes for the anxiety his condition causes me.
Another issue he’s had since his discharge from the hospital on July 2nd is that the pain medication he’s been taking for a long time, no longer works. They gave it to him so much to make him comfortable that now we’re going to have to find something else. To find something that works for him is not an easy task, and it’s hard for me to see him in pain while we spend time to try many different things. I know we’ll find something eventually, but our “team” will help us. We have had great luck though with our doctors and nurses at CHLA, which ultimately saved Nicky’s life. They kept Nicky on despite his age (it’s a Children’s Hospital) and fought for him. I don’t know where we be without them. Nicky’s condition makes me increasingly aware of incredible advances and new possibilities in treatments, but it also makes me painfully aware of the unnecessary snags and obstacles in our healthcare system. Insurance companies have tested my patience so many times I’ve lost count. I’ve taken enough attitude from insurance Companies to last me for the rest of my life. I had to learn to deal with them. This is why to get Nicky the help he needed we ended up going to 8 ERs, simply because he could not wait for the referrals and approvals and all of that nonsense a normally healthy person can. People in our situation need help, period. Sit and ponder for a moment if you could do your job as well as you think you are doing if you had a child like my child in your family?
Another issue that has become evident from his discharge is the need to have another throat dilatation. He just had one in May, but since he could not eat anything by mouth while hospitalized for the 6 weeks from late May til early July, his throat closed back up, so we put in a new request. Yesterday he could not swallow his own saliva.
There is some positive news, however. I live for the silver lining. My biggest cause of happiness right now is that Nicky seems to be in pretty good spirits despite the pain. After a Calvary of almost 23 years, there was a point in the hospital where he could no longer handle life, pain and hopelessness. Over the last few months, it was so bad, that he would barely talk and could sleep as much as 20 hours a day. How lonely must he have felt in it, a vicious circle of pain and despondency. I am certain his body felt like a prison. At CHLA we had many visitors and Nicky received many cards and care packages to lift his spirits. We always admired people who approached Nicky and asked questions. Not because of anything else, but because they admired his bravery, were inspired by his love for life, how they thought he was pretty badass.
Everyone needs love and encouragement, even if it is just a card, a kind word or a smile to go with a bottle of wine or a box of chocolates, or, in Nicky’s case, a soft blanket. As a mom, I had to learn it is imperative to take care of myself. My child deserves a healthy parent. Every day I tried hard to hold my own sense of purpose. I held on for dear life. If I lost hold of that and let NIcky’s battle consume me, I feared my whole world would collapse. In the past 6 months I took on playing piano, read even more books, picked up writing in my diary again (first time in decades) and binge on TV shows and movies to feed my soul so I could feed my son’s.
If you have a lethal illness or disability, there is no recovery. There is just… the rest of your live, however long that’s going to be. You can succumb to self-pity, bitterness and anger or you accept the challenge and make the absolute most of this while the clock ticks down. So many people out there, like Nicky, meet the challenge of their own illness or disability with grace, courage and inspiring faith. I couldn’t be prouder of my son. Seeing him handle EB, just doing what he has to do… I’ve learned so much by his example. I know he never signed up for this disease of for being my hero. But he is my hero nonetheless.
Love & Light,
