Storm

I keep waiting for the moment when we know everything and every test has resulted and I have a nice, neat package of information and updates. Not. Going. To. Happen. So, here we are. We are honestly sitting in an overwhelming, stinky pile of poo. I keep waiting for the pile to get less stinky, less icky, less daunting, I keep walking around it, not wanting to deal with it, because it’s gross and no one wants to talk about stinky poo. Well, tough bananas, I guess, because it’s just getting stinkier.

This will be as concise as I can make it, and I don’t have a lot of information regarding the details of the plethora of changes and spirals and results and such.

In July, Henry had a very rapid, very scary onset of neurological decline. Within 8 days, his brain, as we have known it, was not the same. Memory loss, age regression, forgetting how to walk, could not hold a conversation…. Then he came to a catatonic state. He laid in his hospital bed for 6 hours at a time just staring at the wall. Could not talk, could not look around. Then his other health symptoms took a spiral, and for 6 days, he was either sleeping, staring or vomiting. The doctor teams got larger and larger every day. They finally, at our insistence, worked with our docs in Denver who pushed for them to try one last thing, an infusion of other people’s antibodies into his. He did a 5 day course of this infusion and it popped him into talking a bit. But he was still having a severe amount of neurological issues. They sent us home and told us to ignore it. Um. NOPE.

We have been to Henry’s docs in Denver 5 times since August. In that time, his care team has grown. They are angels and have been working around the clock to tear apart his health history and address the many holes in his testing history. Henry has had so many abnormal results and scans over the past 6 years that I have been fighting tooth and nail to get looked at further and re-scanned and re-tested. His team is doing just that….. their words: “Um, what is this test? Why has it never been followed up on?”… over and over and over and over. YES. PLEASE DO IT. So they have started the arduous task of following up on ALL the abnormal tests and scans. Below is what we have. It’s not awesome, we are processing slowly and have a very long road ahead of us.

We have learned that Henry’s body does not have enough antibodies, T-Cells and Natural Killer cells to fight infections and viruses properly. He is officially highly-immune compromised. We are in the beginning of this next cold/flu season. Not good. At this point, along with everything else his body has going on, he is very fragile. We have been directed that he should not be in public places, (except for going outside): no church, no airplanes, no stores, etc. Our system of life has to change dramatically.

Henry has also tested positive for Lyme disease, along with 2 co-infections of Lyme. At this point, this is highly affecting him, but we cannot treat these infections right now as he is too unstable.

Glucose (sugar) has always been an issue for Henry. He has always tested low or on the lowest of the normal range, even when getting his infusions of dextrose (sugar) every night or even continuously. It has been something we questioned in many doc appointments. We now know, with recent test results and looking at specific genes in his raw GNOME (DNA) data, that he has some sort of glucose disorder. We know that he is not getting enough sugar to his brain. Your brain NEEDS sugar to thrive and provide basic function. It is so important. How do we get sugar to his brain? We don’t know yet. Can we get him back all the way? Did we catch it in time? We don’t know yet.

Henry had an abnormal liver scan about 5 years ago that we questioned continuously. It finally got rescanned last week. It did not come back with good news. Since he has had low glucose issues, we have learned that this has damaged his liver. Your liver pulls from your glucose stores. Henry has not had enough glucose stores, so his liver has been pulling from his fat stores. Your liver is not meant for that. He now has fatty liver disease (he has the liver of an alcoholic) and we have to stop the damage right now. The liver specialist needs to do a liver biopsy (mid-December) to determine proper treatment.

We have fought docs and those skeptical of his port and the need for his D10 (sugar) infusions for most of his life. We knew it was the only thing that worked and only kind of knew why. When your child is struggling before your eyes and you know that something makes him feel better, you just freaking know. Now we know and have been told that our push for D10 has most likely saved his liver and his brain until this point, but it just hasn’t been enough of it and his body is completely exasperated and exhausted.

We have also had Henry’s mitochondria (energy powerhouse cells) function re-tested. To put it simply, they are not functioning properly. He has some that aren’t hardly working at all, and he has double the amount that a normal person has (when this is the case, this means that his body is trying to make up for the lack of function, but in the wrong way). Mitochondria cells are how we make energy and they also tie into the immune system, the liver function, etc. 

There have also been other recent test results that prove overall that he is in the middle of an autoimmune encephalitis (his body’s immune system is mistakenly attacking healthy brain cells, leading to inflammation of the brain – which brings on various, often severe, neurologic symptoms).

Overall, his team is systematically trying to figure out which of all this comes first, what is leading what, is this a big domino situation, are all his health crises independent of one another (most likely not). We are talking clinical trial options, treatment options, waiting on other tests, etc.

What do we know? We know that we have access to 24 hour D10; his body needs more glucose RIGHT NOW. We will be running that continuously for the indeterminate future. Insurance has also approved a higher dose of IVIG (other people’s antibodies; the hope is to help his immune system – but we won’t know for about 9 months if his body will react well, if at all to it) infusions. At this point, he will be doing infusions of this every 3 weeks. The doc calls this our “tune up period”, where we are trying to find the perfect dose and then, subsequently, the perfect spacing between doses. Once this is determined, we hope to be able to get his infusions closer to home, but that is another kind of insurance approval and we all know how long that can take. For now, we will be driving to Denver as often as necessary as flying is no longer a safe option.

What else do we know? Stick with your gut, parents know their kids best. They JUST DO. Keep fighting. Docs are just people and they don’t know everything. Some admit this, some do not. If something doesn’t feel right to go home and ignore, don’t. Be pushy. Be annoying. Piss them off. Call them 15 times a day. You are their only advocate.

We are in the middle of a stinky shit-storm, I’ll just say it. These new diagnoses and findings are ON TOP of the other 18 known issues, so these new issues are even trickier to work on. We have some more answers and more tests are still pending. Our baby’s body is a disaster and we hate it so much. We are thankful that we have an amazing team in Denver who genuinely cares and wants to HELP. We are trying to process what we need to do and how to best do it. We feel like we’ve moved from our community, but yet not landed in a new one, right now we are just kind of “gone”. It’s a very strange, weird, disconnected place to be. We are sad and we hope and pray that we can get our sweet boy back. Our emotions flip flop all day. We try to figure out how to get a smile on Henry’s face when he feels well enough, although Ellie and Louie (our dog) can still pull it off, sweet things. DId we plan to have a nomadic life and upbringing for our kids? No. But we are all together, so for as long as we need to, we go. Ellie hugs us a million times a day, so excited for our adventures. Homeschool on the road, new scenery, and all the while in disbelief at the constant curveballs. YET, God is still showing up in many, many ways through random kind people and closing gaps on crazy situations, somehow always providing for our basic (and not-so-normal) needs. We don’t know where we would be without God, our amazing families, church family, and wonderful friends that have stuck by our side and, along the way, we have been continuing to learn to humbly accept help when offered and to ask when we need. We all want to be so independent, prove we can do life on our own, put on that brave face and power through. Well, our power has been used up. Thank you to those that we can lean on, even when we can’t communicate, reciprocate, have half written texts back, and are mostly gone and away. So we keep on keeping on, and that may include stopping at a Llama farm along the way. Because. Well. Llamas. Here come the Ottens, in all our disastrous glory.