Late last year Nicky started having issues with his G-tube. This is the same g-tube that he has had since March 2000, and we’ve had minor issues since then, but lately it was hurting, more and more, and nothing was helping.
After trips to his Doctor and the ER, tube changes etc, it became clear he either needed a new ‘hole” or something was wrong with his stomach. The tube was leaking, it was painful and Nicky could no longer stand to be fed through it. Any meds or food he had to take orally and that was a challenge for him. The only GI that Nicky has ever seen was at Stanford because they are the only Hospital familiar with his condition, so I made arrangements to take Nicky there for emergency surgery for his g-tube. The whole thing was a disaster.
The day before the 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 I was on the phone all day again (this time not crying) and they were STILL working on the approval… 😑.
Sometimes the fight drains me in so many ways… it’s hard to explain. I was exhausted. All was finally approved by 8pm for the next morning’s surgery. Nothing quite so stressful as this last minute stuff.
During the next day’s surgery 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 painful. The Doctor put in a much longer “tube” ( we went from 1.2 to 2.7) and while it was going to still be painful for a while whilst the abdominal wall healed, we were hopeful that it would all heal in the end.
We got 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 the 4th night and started the pump he was howling in pain and it was leaking everywhere. I ended up taking him to CHLA’s (Children’s Hospital Los Angeles) Emergency Room 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 was still occuring a bit.
We tried to start a feeding the following night but it was still too painful.
For the following several days it was back and forth. One day was much better, he could eat a lot by mouth (still nothing through the tube except meds) and the next he was in a lot of pain, all in all things were getting worse. I started trying to schedule an endoscopy at Stanford to “see” what was happening in his stomach.
Finally we trekked back to Stanford. Since we had trouble getting a “referral” we drove the 6 hours to their ER (they couldn’t turn us away, that was our angle, plus, it was an emergency indeed) and the surgeon was actually quite surprised to see how bad the g-tube site was-all raw everywhere all around and inside. Since Nicky was not under anesthesia he opted to use dermabond to seal everything up. He seemed to be okay for a few days, so we went home.
We thought things were stable, but life with EB can be devastatingly unpredictable. We are constantly banging our head against the wall to figure out what to do next.
A few days after we came home Nicky was in MORE pain than I have EVER seen him, and that’s saying something. While changing bandages Nicky and I had a good cry together. I HATE EB. I HATE EB. I HATE EB.
To make a long story short, all of a sudden NIcky could “feel” stomach acids leaking out. He would SHAKE and SCREAM from the pain. We got more of that Dermabond glue they gave us, patched it up, all day practically we spent trying to bandage and re-bandage the area to no avail. By evening Nicky was to the point of no return. If we didn’t think of doing something drastic, he was not going to sleep at all. He went into RAMBO mode, pulled everything out, including the glue, and put a spare g-tube in to stop the stomach acid from leaking out. The result was IMMEDIATE relief. He could now drink and eat without pain, and the fits of incredible pain gone. He couldn’t be fed through the tube, but at least it didn’t leak anymore.
At this point Nicky wanted it stitched up. He didn’t want anymore stomach acid leakage. Now the project was in my hands to get everything approved to make this happen. It’s never an easy task. Nicky cannot just be put under by “any” anesthesia team, they need to be versed with EB as his needs are unique. By the following week I was successful to get Surgery scheduled to sew the hole closed-or so I thought. Nicky was looking forward to having this nightmare end… he was almost inconsolable by now.
Because I was sick with a bad cold his dad stepped up to take him, and unfortunately he found out that the people that were scheduled to operate on Nicky didn’t know anything about EB. That’s a no-no in our book, so his dad took him to the ER at the Children’s Hospital @ Stanford. They didn’t want him there because he’s no longer a child but the EB experts are all there (not many RDEB children make it to adulthood) so reason prevailed. He may be an adult but he still has EB. A team of Doctors was now involved in his care. Nicky was extremely weak as he could not eat or drink anything, so initially they put an IV on him to supply hydration and give him pain meds. They were trying to get the acid in his stomach reduced enough so they could take his g-tube out and allow it to close on his own without surgery. The following Monday they put a PICC line in to feed him through it so they could bypass the stomach to let it heal. His dad and I switched back and forth so he always had a parent by his side. Nicky lost a total of 35lb in the past 3 months and we could now see his bones, it was a dire situation. If that didn’t warrant him being in the hospital I don’t know what would.
Every morning there was a “huddle” of all the Doctors, who discussed what the issues were, how Nicky was doing and how best to move forward, addressing any issue that came up.
Nicky had been very emotional over all of this, he played his computer at the hospital distracting himself, but he was frustrated and shed more than a few tears. It always kills me to see him like this.
As the hole healed they put a small tube in but wouldn’t use it, just to hold the hole open. Slowly they started feeding him through it. They changed the size over and over again and he ended back to a 1.4 size. He was doing okay so at one point they stopped using the PICC line and switched to g-tube only. His stomach shrunk considerably the past 3 months since this whole ordeal started, so at this point 40 mls an hour was the most he could handle.
Nicky’s been home since this past weekend and is slowly getting better. He can now eat a few things without pain, and his g-tube feedings are back and we’re slowly increasing them to go back up to his “normal”. We’re up to almost 50 ml an hour now. Our goal is to get back to 100 ml an hour. I think within 6-8 weeks he should be back to his old self! I am hoping these issues are now part of the past and we can move forward to his life being normal and boring again. Who knew boring is good? We certainly do now. Not that our life has ever been boring.
Thank you for your support, as always.
Love and Light,