Well, my plan was to leave the Caringbridge chapter of Tucker's journey closed after the updates from over a year ago. But, here we are :). Tucker has been dealing with some pretty hefty medical issues for a while and Facebook just doesn't seem the place to give in depth details. Many wonderfully, caring people ask about Tbug and how he's doing and I feel this is probably the best way to make sure those who want to know are truly informed. So, here goes…some of this might be a bit graphic in description so head's up on that.

In March, 2015 Tucker was hospitalized for a GI bleed. Over the last couple of years he's had infrequent occurrences of evidence of bleed in his GI tract but we've always been able to correct and resolve it without major issue. March of 2015 was a bit different. We took Tucker to the ER after i suctioned a rather large blood clot from his mouth. I knew that couldn't be a good thing so we wrangled up an ambulance and headed to Atlanta. Soon after we arrived Tucker began vomiting a significant amount of blood. Tucker has worried ER staff before but this time I think I saw a bit of panic in those caring for him. The on call GI doc was called in and Tucker was taken to the OR to be scoped so the source of bleeding could be found. At that time, Tucker was found to be bleeding from a severely eroded esophagus. Tucker's reflux is quite severe as a result of his brain injury. The valve at the bottom of his esophagus that is to keep stomach acid out is just too weak to do its job sufficiently. After the scope Tucker was moved to PICU. He was left intubated and on a ventilator for a few days to protect his airway from the bleed. He also received a blood transfusion since he had left so much of his 0 negative on the ER room floor. This was all quite scary for us. We weren't given very many options of treatment at this point. IV meds stopped the bleed but discussions of surgery were our only real possibility for long term treatment. We were given 2 options, neither of which would be a guarantee and one of which came with a serious warning of difficult recovery. Tucker wasn't strong enough at that point to proceed with any surgery so we had some time to think over our very short list of options. 

We keep a continuous drain on Tucker's G tube 24/7 (he's fed through a J tube that goes directly to his jejunum). This was our only hope early on to minimize acid in his tummy that could reflux up into his already traumatized esophagus. This drain is also what lets us know when a bleed is flaring up. When we start to see anything brown draining from his G, we know a bleed has occurred at some point. Once the blood has spent some time in the acid of the stomach it turns brown. A little brown was not terribly concerning to us and we had meds to administer to try and reverse it before things worsened. Sometimes this worked sometimes it didn't. Tucker has had a few hospitalizations over the past year when we couldn't get things under control but IV meds would usually do the trick and we would then be back home. This past January Tucker had a flare up while we were in NC. Anytime we see bright red blood we know we must get to a hospital quickly. That's what happened in NC. He just suddenly threw up bright red blood. Not a large amount, thankfully, but enough to warrant attention! We hitched a ride on another ambulance to Levine Children's Hospital in Charlotte and after a few days there he was well enough to travel back to GA. 

About a week and a half later I went to suction Tucker after hearing a big cough that I knew had caused his reflux to kick in. When I got to Tucker I noticed a big, bloody clot on the bed next to him. He had apparently brought it up and spit it out. Last time I had seen one of those suckers things got really bad so we wanted to get to the hospital ASAP. Landon was on shift and at the station that is to respond to our house. I called him first to let him know what was up and then called 911 so that he could be dispatched to us :). Long story short, the bleed worsened once we were in the ER but finally stopped after IV meds had been running for a while. Whew! He was admitted, of course, and discussions resumed by the next day of just how "not a good thing" this recurring bleed is. After years of being told that pneumonia is the biggest threat to Tucker's life, we were now faced with the fact that we were much more likely to lose him to a GI bleed that one day docs might not be able to stop. 

My mom brain had been mulling lots of things over for many months and in the back of my mind I had been giving serious thought to taking Tucker off the ketogenic diet. The diet had worked incredibly well for him the first three years that he was on it but I had begun to wonder if maybe it was part of his GI problem. Landon and I had talked about this a few times but we hadn't gone any further with it. Tucker's neurologist was in the hospital when he was admitted and when he came by his room to check in I asked if he thought the diet could be a contributing factor (not the sole cause but maybe at least a factor) in Tucker's recurring bleed. The ketogenic diet is a 90% fat diet with very limited carbs and protein. The diet can help to calm seizures (which it did COMPLETELY for Tucker the first 3 years!). The neuro agreed that the high fat content could now be contributing somewhat to the reflux/bleed issue. The actual cause of Tucker's problem is uncontrollable reflux. We know that. I just couldn't help but wonder if this high fat diet was somehow adding to that problem. I wondered if maybe Tucker's body wasn't absorbing the fat as quickly as it used to and therefore causing more acid production in an effort to process it. I still have no idea if there could be any shred of truth to this but after talking to neuro and the on call GI, Landon and I decided to consider weaning him from it. Even though Tucker had started having seizures again 2 years ago we knew the diet was still helping to squelch most of them. Anytime Tucker's ketone level dropped his seizures would increase. Landon finally said that if we had to choose a battle right now which would we rather fight: seizures that may or may not have any long term impact, or a recurring GI bleed that we could lose him to sooner than later? We decided to go off the diet and resume a battle with seizures in order to take a chance on the fact that maybe, JUST MAYBE a diet change would help. We told the docs that we wanted to wean him from keto and they started the process the next day. Tucker was in the hospital for a week and was completely weaned off keto by day 5, I think. Our neuro had to add keppra (a not so nice seizure med) for Tucker as we weaned. We knew seizures would increase as his ketones dropped and they indeed did. The keppra helped and we watched closely for any sign that he was reacting negatively to it. Fortunately, he seemed to tolerate it well. I'll share more about the seizure battle, meds for that and Tucker's cannabis oil another time but what we've seen so far on the GI issues is that the diet change does indeed seem to be helping. Tucker has been off keto for almost a month and we have only seen one small appearance of brown in his G tube drain. It was a very small amount and resolved almost immediately on its own. It could have been a tiny flare up or it could have been from blood we'd seen that day around his G tube on the outside (friction can sometimes cause the site to bleed). Regardless, it wasn't enough to even worry about and didn't require any extra steps to resolve. Before we weaned him off keto, he had brown drain at least once a week lasting from 1 day to several days before it would resolve.

The output from Tucker's G tube since we came home from the hospital has been what we term around here as beautiful. I realize stomach acid isn't really beautiful but when you've seen various shades of blood appear in it for so long, a normal color really is a beautiful thing :). We saw Tucker's regular GI doc this past week. She doesn't feel the diet change will really make that big of a difference for Tucker long term. So, basically, she disagrees with us on the change and feels we will still be dealing with this bleed issue in the near future. Time will tell, I guess. It could very feel resurface since we can't exactly fix Tucker's uncontrollable reflux. But, what we know at this moment is that his esophagus at least seems to be healing as much as it can since there's been no real evidence of bleed in many weeks. 

I would still recommend the Ketogenic diet for anyone looking to control seizures. Like I said, it worked phenomenally for Tucker the first 3 years. Many docs wean kids off the diet after 3 years anyway but other kids have been on it for many more years. I think Tucker just maxed out on his tolerance of it and we're just hopeful now that taking him off it will help him to become healthier and healthier and feel better everyday.