I often post updates on the Facebook Page for my son (https://www.facebook.com/NickyLivingWithEB/) about his struggles and our fights, but the fight over his g-tube lately was one for the books. I have learned over the years that I get more bees with honey, but sometimes insurance companies and the rest of them get me over the edge. That’s where my Italian psychotic bitch shows up, and let me tell you, I love her.
Of course, being such a rare disease even in a large population area, there are very few people I can rely on, because there is certainly nobody around here with experience with EB. Normally the best resources are other parents, I have at least one mom on speed-dial who is also my best friend. Even with such support, Epidermolysis Bullosa is very different with each patient, and the care has to be customized through a lot of trial and error. Daily care is essential and mom is usually the person that shoulders most of the responsibility. Yes, me.
Having said that, over the years I’ve learned to rely a lot on Nicky’s dad. He’s stepped up considerably the past decade. Nick is a very unique guy and we are still friends. No, seriously. When I share my story on how well I get along with my ex-husband people are often shocked. We are co-parenting our child with special needs, and for us to be Nicky’s “team” is extremely important. We may have sucked as a couple, but I hold no resentment, as he truly is a good guy. If I was married to him for over a decade, it would be unconscionable for me to think that I stayed with him if he was that bad. I am grateful for our time together. We were always taking a trip to Vegas or some amusement park. We worked hard, but we played hard too. I choose to remember the good. That does not mean my current husband needs to worry about our friendship (he knows better), it just means that I can talk to him trying to help Nicky without hurting myself in the process. I have heard some horror stories from my girlfriends about their exes, but you will never hear those from me. I am know I am lucky. Whatever my hurt, I chose to move on and forget, the past is in the past. Carrying hate is a heavy load, and I chose to let it all go and concentrate on the present. Our son deserves our best.
Nicky was with his dad when his g-tube started becoming unbearable. The week prior I had to take Nicky to the local ER and then to his PCP to get this issue sorted out. His g-tube was painful and leaking and everyone came to the consensus that he needed a longer and wider g-tube. I changed it and things seemed better, but then when he was with his dad things became intolerable. I called my contact at Stanford and his dad started talking to the surgeon explaining the situation. The emergency surgery for Nicky’s g-tube was officially scheduled for this past Friday morning at Stanford. We were still unclear about what was wrong, we didn’t know if he needed a new ‘hole”, his old hole needed fixing somehow or if something was wrong with his stomach. All we knew was that it leaked, it was painful and we couldn’t put anything through it. At that point any meds or food he had to take orally and it was a challenge for him.
Two days before surgery Stanford pre-auth called me to let me know of the denial for the surgery, apparently there was a change of out-of-network “rules”. Mind you, for 19 years we’ve always gone to Stanford for his g tube issues and we always had AEtna. I mean, Nicky is always going to be out of network, he’s 1 in a million for goodness sakes! I then called the Patient Care Center at Stanford who told me to call the insurance, who told me to call the AEtna pre-auth dept, who told me to call the Medical Group. I left two messages there… I couldn’t stop crying. 😰 Medical Group called me back and told me everything was approved. To go.
We made it safe and sound to the Bay Area but Stanford kept calling me about the approval. I spent the whole evening on the phone once we arrived at a hotel near Stanford (this time not crying) while they were STILL working on the approval… 😑.
I figured… plan B: Worse comes to worse I would take him to the Stanford ER… they couldn’t turn him away there, right? I was not leaving until his tube was fixed. He tried to eat and gets his meds orally but his throat hurt a lot, he could barely get any calories in and he couldn’t take most of his meds. He REALLY needed his tube!
All was finally approved… I got the last phone call at 8pm confirming everything which helped me go right to sleep. Nothing quite so stressful as this last minute stuff. Sometimes the fight drains me in so many ways… it’s hard to explain.
The next morning we had to be there at 6am. Ick. The anesthesiologist had such a hard time putting an IV in him because he was dehydrated, so Nicky insisted on NOT being put “under”, the rascal! He was so happy when I saw him, my little Rambo did it all without pain meds! Apparently the abdominal wall was thicker than it used to be 19 years ago (I know, shocking, LOL) so the tube was leaking because the gastric fluid from the stomach was going into the abdominal wall and that’s why it was so painful. The Doctor put in a much longer “tube” ( we went from 1.2 to 2.7) and while it may still be painful for a while whilst the abdominal wall heals, it should all be good.
We drove back from Stanford and the new “tube” worked “ok” (still leaking and still pain but much better) for a grand total of 3 nights. When I got him ready for bed on this past Monday night and started the pump he was howling in pain and it was leaking everywhere. I was out of my mind with worry. I ended up taking Nicky to CHLA’s (Children’s Hospital Los Angeles) Emergency Room late Tuesday Morning after talking to our favorite NP who works for the Hematologist Nicky sees there. She was majorly concerned and jumped a few hoops for us. For one, she allowed Nicky to be seen by their ER even though he’s over 18, she then called in advance to let them know we were coming so the registration and arrival was a breeze. They took us right in and gave Nicky all sorts of X-rays to figure out what the issue with the g-tube was. After extensive talks to the Doctors we came to the conclusion that the g-tube Stanford put in was perfect and we should not change it out, the cause of the pain is mostly the wound in the abdominal wall that is trying to heal from all the leakage of the gastric fluids that occured before our trip to Stanford. She prescribed an ointment/cream called Calmoseptine to apply around the g-tube area to relieve the pain and absorb the leakage that is still occuring a bit.
We tried to start a feeding these past two nights but it was still too painful, so he’s trying to eat by mouth as much as he can. The Ensure Plus is too thick, but he can swallow milk good (and he says it feels good around the balloon in his stomach) and I made some Jello and some mashed potatoes with a lot of butter and cream cheese for calories… it’s a challenge for Nicky to eat by mouth, but now we know he just has to hang in there until the abdominal wall heals, so we’ll make due and we’ll do what we have to.
This whole ordeal is worrisome as Nicky has already lost 20 lb through it all. In a way is good because now he can transfer much easier as he has to put a lot less weight on his feet, so we gotta keep thinking positive and look at the silver lining. All I can say is there’s never a dull moment around here! With any luck I’ll have time to take down the Christmas Tree and stuff this weekend!!! 😂
I know many people with special needs don’t like to be called heroes, but Nicky doesn’t mind, and I am very happy about that because he’s truly my inspiration, my example of perseverance and my hero. His strength, his ability to endure, his determination and his hope is beyond anything i could ever imagine.
Love & Light,