6 Months to Normal

I want to share our journey with all of you because it’s been a long road. If we can help at least one person going through something like this, then it is worth it to me to be open about our feelings and struggles.

I can’t believe it took 6 months for our life to get back to normal, which explains why my blog became silent. It’s not that I had nothing to say, au contraire! When you spend oodles of times and endless nights in the hospital, you become this zombie that is hard to describe. I did start a diary again and that’s what kept me sane.

It all started late last fall. Nicky likes to tell the story that it started back in 2017 when I accidentally ripped his tube out, balloon and all, while helping him go to the bathroom, but the truth is that he was fine and his g-tube didn’t start giving him problems until last fall. I clearly remember in late October being at Stanford, being ready for a throat dilatation, when he was complaining about his tube and how it was painful. I wanted Doctor H. to change it under anesthesia but Nicky didn’t want to, so I let it be.

By January, however, things took a turn for the worse. The pain became unbearable. I took him to the local ER and the Doctor said that the most likely culprit was the tube, it needed to be changed in size. It was so bad that I wanted to take Nicky back to Stanford to get Doctor H. to change his tube under anesthesia. After some trouble with the insurance (I know, shocker!), the Doctor changed it as we wanted, but within a week it hurt again, worse than before. I took Nicky to the ER at CHLA, they took x-rays and told us the tube was perfect. Hmmm…

Nicky getting his PICC line

Discussing this whole thing with the Doctor H at Stanford he said that the hole was probably bad and needed to close it. Since getting the insurance to approve this one would take too long and Nicky was in pain, I drove up to the ER at Stanford, they took us in and the Dr tried to close the hole with skin glue. Nicky was hospitalized for 3 days and it looked so good they sent us home. Within a week of being home Nicky was in so much pain he ripped that whole glue out and put a g-tube in to his immense relief. It still hurt, but not like before.

Eating anything at this point was out of the question, the tube was leaking stomach acid and gtube feeds were impossible. How do we feed this kid?
I pleaded Dr H for help, and he enlisted a different team of people to close the hole surgically and to go to the ER again to expedite the procedure. Because I had a bad cold I asked Nicky’s dad to go on my behalf and he did, but when he got there he was appalled that the Doctor and Anesthesia team at Stanford knew nothing about EB and refused to let anyone touch Nicky.
He regretted this decision months later, but at the time he was pretty mad at me for allowing this to happen, although I had no idea that was the case. At this point he took Nicky to the ER at LPCH and waited there for someone to help. At first nobody wanted to. Nicky is 22, and even though he looks like a kid, he hasn’t gone through puberty and physically should be treated like a child, his biological age made it so they wanted to turn him away. When Nicky told his dad, in front of the Doctors to take him home to die… that got their attention. I am glad I wasn’t there because hearing Nicky say that would have killed me.

At any rate, they got him admitted, put a PICC line in to feed him with while they figured out what to do with the hole. At this particular point in time, in February, there was no Gastroenterologist with EB expertise at Stanford, one would not join the team until months later, hence they just tried to let it close on its own, and when it got small enough they put a new tube in and started the feeds. Nicky was in the hospital for a little over 2 weeks and his dad and I took turns. I took him home and at first everything was good and then almost overnight everything went bad again. Ugh.

By late March we went to the County Hospital in Los Angeles’s ER for help. We didn’t want to drive back to Stanford. They also didn’t know what to do. The Doctor (Dr. I.) there did a throat dilatation so Nicky could at least eat but the hole leaked. Everyone wanted the hole to close on its own. In the meantime Nicky was losing tons of weight.

By late April we finally had an appointment with Dr I. and he stated that the hole would never close on its own, that he needed surgery ASAP. We called the # he gave us but they couldn’t fit Nicky in until late July and there was no way we were going to do that. So we went to the ER at County AGAIN. I counted a total of 8 ER trips during these past 6 months. County couldn’t do the surgery right away, we had to wait. I hear that County is an amazing hospital to go to if you have a true emergency. They have the best Doctors etc., but apparently Nicky wasn’t emergency enough. Crazy, right? After almost 2 weeks of waiting, Dr. Coates twisted the arms of his colleagues to get Nicky admitted to CHLA to have surgery there. Twisted because, again, at 22, Nicky should not be admitted to a Children’s Hospital. His weight had plummeted from 110lb in January to 66lb. He was a skeleton. They put a PICC line in immediately.

Nicky was scary skinny. Dipping to 66lb.

Are you bored yet with all this story? Nicky was admitted on May 20th and released on July 2nd at CHLA. The main Doctor that needed to do the surgery was unfortunately on vacation so Nicky had to wait 4 weeks in the hospital for him to come back and schedule it. Of course we didn’t know any of this. We were upset and panicking. Every morning the team would come in refusing to do the surgery because they felt “uncomfortable” until this Dr came back from vacation telling us he would do it. He had operated on EB children before and he would not only close the bad hole but put a new one in. This guy was our savior in every sense of the word. He literally saved Nicky’s life. I cannot emphasize this enough. I find it interesting that just as we were at our lowest low, this miracle Doctor appeared. He came into our lives when we needed him most.

Nicky’s dad and I would switch back and forth, spending 4 nights in the hospital each. These endless days had a very strange effect on me. I was exhausted, yet I did nothing. I couldn’t do anything but be prisoner of a hospital room. How could I be tired? Which made me wonder how in the world Nicky could possibly stand it. All in all Nicky spent a total of nearly 3 months in the hospital. That’s probably why he just slept most of the day, so he did not have to “think”. When he didn’t sleep he played at his computer…

While he smiles in this picture, at any point in the hospital I was witnessing the slow erosion of his shining spirit… it was horrible. I hated this whole situation. Our whole lives were on hold until this situation was resolved. I had to cancel so many things…. and I didn’t dare schedule anything, even something as simple as a Dentist appointment for fear I might have had to cancel. Nicky even missed Camp Wonder for the first time since 2003.

As you can see, it’s often more than a full time job caring for a child who is medically fragile. We act as nurses, doctors, therapists, administrative assistants, and chauffeurs. For most of us, the needs of our child make working impossible and impractical. I am also thankful that his dad has a job that he can do from home so he did a lot of it from the hospital room. I don’t know how other working parents could do this!

At the end of this rather lengthy blog, I want everyone to know that I discuss my son’s condition because he lets me, he wants me to. I don’t do it for attention, sympathy or pity. I didn’t write my book to make money (although, after 2 bankruptcies resulting from health care costs, who could blame me, really?), I do all of this because I want to inform, educate & share our struggles. I adore my family and I want a cure for my son.

Love & Light,