Thursday, April 25, 2013

Into a crib we go!

Day 3

What an incredible day for Little Goat. As parents focusing on small victories, huge milestones like the one we reached today make you want to stand up and dance. Having maintained his temperature for 72 hours, off all antibiotics and antivirals, and no longer needing supplemental feeding with 10% dextrose, Landon was moved to out of his isolation incubator and into a crib today! Karen and I arrived this morning to find him happily snoozing in the open air with only monitors, PICC line, and feeding tube attached. I understand that his condition has made modest improvements but visually, and psychologically for mom and dad, he took a huge leap today.

A few of the small battles we won overnight to reach this triumph: Landon's skin swab for viruses came back negative and he was subsequently taken off of acyclovir. At 6 o-clock this morning he reached his maximum feeding dose (60 ml of milk ever 3 hours) for his age, dismissing the need for a D10 IV. This was expected but still a wonderful step for Karen and I as it was his last 24-hour IV line and allows us to hold him more or less unimpeded. With the risk of infection removed, Landon's nurses are now able to be in Landon's room and touch him without gowns and gloves. This is probably more of a psychological boost for those of us watching but we like to think he is more comfortable with the contact of human skin than neoprene. The greatest benefit to having infection cleared off the table as an etiology is that friends and family can hold him now! What a blessing to be so close to such a precious gift.

A friend pointed out to me that I have failed to emphasize how rare Landon's condition really is. Subdural hygromas are an uncommon but well documented medical condition. However, the average age of those diagnosed is over 70. You see, subdural hygromas are normally caused when an elderly person with declining circulation suffers a traumatic brain injury from a fall or other accident. Quite rarely cases are seen in children after suffering from severe meningitis or other brain infections. To our knowledge, Landon may be only the 4th person to suffer from a developmental subdural hygroma. Even that description is inaccurate as a hygroma describes a build-up of cerebrospinal fluid and, as we learned today, Landon's brain is actually surrounded by something else entirely.

A neonatologist met with Karen and I today to discuss the pathogenesis of the space occupying lesion that inhibited the growth of Landon's brain. Initially thought to be blood, further examination of radiographic films has led them to believe that it is actually proteinaceous fluid around his brain. To simplify, blood is made of three main components: red cells, white cells, and the rest. The rest is called plasma which contains 90% water and 10% solids, mainly proteins and chemicals released during metabolism. This plasma can leak out of blood vessels in some situations. In this case, Landon's brain began developing too far from the vessels in the trunk of his body and so when the vessels in the brain met the vessels from the body, they were stretched and narrowed. Think of it as a Chinese finger-trap: as the two ends get farther apart, the connection in the middle gets narrower. This happened when Landon's was just starting to develop and those stretched vessels allowed plasma, and maybe a few red and white cells, to leak into the area around his brain, eventually filling the space and preventing his brain from growing further.

So now that we know what happened, what does that mean for Landon? Unfortunately, we still have many questions. First, why did Landon's brain begin to develop too far away from his body? The doctor's are as stumped as we are in this regard. Our best guess right now is that a genetic mutation caused the problem. To find out more, Landon will have blood drawn from his PICC tomorrow for a micro-array and other genetic panels. This should tell us if he has any genetic changes that caused his disease. Karen and I will likely have blood and tissue samples taken as well to determine if we may carry recessive genes that could have been passed down to our son. In all likelihood, this is an extremely rare, and novel, gene mutation unrelated to his parents. This means Landon may be the first and/or only person to have this gene mutation identified. His condition is rare indeed.



We are well aware of our good fortune to live in the age we do. Neurologists and neonatologists from across the country have been provided with Landon's medical records and are providing insight into possible causes and ways to improve his life from here on out. What has the collective knowledge of the brightest minds in the country told us? Something of which we were already well aware. Landon is unique and we need to cherish his time on this earth and the lessons he can teach us.

Upon finding out that Landon was a 'mutant', I joked to Karen that we should find Professor Xavier's number, we have a new member for the X-Men! In reality, I would love for Landon's mutation to have given him a superpower, a gift that would make him a world hero and role model. But maybe instead of the ability to fly or x-ray vision, Landon was given the power to teach us things we can never learn in a classroom: compassion, love, patience, and hope. To cherish the moments we have and the victories we win. To traverse our difficult times with grace and faith. Landon may not be able to jump over buildings. Realistically, he may never have the chance to learn to crawl, and yet, in my eyes, he is more of a hero to me than any comic book protagonist. If we could all embrace this lesson of love and benevolence, what need do we have of crime fighter? Landon's lesson is that we can all be heroes to someone else each day because we usually don't need saving from an evil mad scientist. Usually we need a hug, a kind word, a held door, or friend to reminisce with.

God Bless all of you for being the strong back I need to help carry myself and my family through this difficult time.

9 comments:

  1. everyday is a milestone when you have a new born -- his milestones though different are just as significant
    keep up the positive attitude i am hoping that you find the answers you are looking for and that he will be home soon much love is being sent your way !!!

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  2. He's also a hero to future generations because we have so much to learn from this condition. He has the potential to change the future of medicine and perhaps even help future children suffering from this condition. That kind of hope extends far beyond you and Karen and everyone who knows you and knows what wonderful parents you instantly became; you've been given a gift of a child who could very easily, and already is, changing our lives, and the world, for the better in the ways you listed and so many more.

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  3. In all honesty, this is probably one of the most inspiring things I have ever read. I made the mistake of reading this in my classroom and my students are wondering why I have such a goofy smile on my face from reading something so heartwarming. You both are amazing. We love you.

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  4. Landon was given to you from God because our Father new you could cherish him and handle the challenges given! Your entire family has been through some of the toughest thing's but it seems each of you teach us all something new every time! Your courage and faith inspires so many! Landon is your gift from God but you are all the perfect gift for him as well!! God bless and continue to learn from him and teach us as you go forward! I thank all of you for being so amazing and letting us pray and be a part of your journey.

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  5. Trent, you and Karen are amazing and have the most wonderful outlook on all of Landon's challenges...he is truly blessed to have you as his parents! I personally think Landon's progress so far is beyond modest, and may not have even been possible without the 2 of you believing in him and his abilities. When Denise first told me what was wrong, I cried for what your family was potentially going to miss out on; now I come home everyday to Facebook and An Adventure with Landon to see what is new and exciting for him to have accomplished, and I sit here smiling while reading about him. I wish you all the best, and hope that you and Karen will soon be able to bring your handsome Landon home!

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  6. Powerful...is all I have to say! Only a medical student could expain this in such a way we can understand:) I sat throught a Maternal Chile/ NICU seminar today at ST. Elizabeth Hospital. Listening to Surfactant origins, uses, success rates etc., gastro issues (including bowels on the outside of the body), Fatty Liver problems etc. It amazes me what medical science can do. But no one explained a medical issue so understandable as you just did Trent! I did ask a L & D nurse that has 40 years experience and runs the Bridges/Embrace program about Landon. She said she had NEVER heard of his condition. I have a tremendous amout of respect for this nurse. She also said, what if they screened all of us like they do the newborns now..wonder what all they would have found. Hmmmm. Got me thinking:)

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  7. Trent, you truly are an amazing writer. The strength and love you have for your son and your family is very evident in everything you say. Landon is very very lucky to have you and Karen on his side. He is such a sweet baby! He will teach you more about love, compassion, strength, and tenacity than any adult ever could. Keep up with blogging! He's very special to me, and I'll like keeping track of him! :o)

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  8. What a wonderful blog you wrote today. Thank you !

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