Wednesday, May 1, 2013

Last Day in the NICU

Day 9

Sometimes when you're so focused on a crisis in your life, it is easy to forget that the world around you doesn't slow down to let you recover. Today was a gentle reminder to me that I have a bit of catching up to do and I took the morning and part of the afternoon to finish some routine tasks. First and foremost, I studied for and took a clinical pathology test this afternoon. My studies have definitely helped me stay grounded during some of the more stressful moments this past week. Many of our friends and family have expressed concern about my ability to keep up with classes and finish school but studying has become so engrained in my daily routine that I actually use my notes to relax at the end of the day. Hopefully this habit will serve me well as I finish out the semester.

Along with school there were bills to pay, a yard to maintain, and house to clean. After we finally caught back up with the 'real world', we headed back to our hospital routine after dinner. Having missed most of the day, Landon's doctors and nurses had lots of filling in to do for us. Lots of good news to start with. Goat passed his carseat test with ease and we have permission to take him home tomorrow afternoon or evening. That is promising for his neck muscle tone and indicates that he is getting stronger and making improvements in that regard. Hopefully he will begin to develop more tone of his vocal muscle and won't squeak and groan when he breathes anymore.

 Landon's new heart and respiratory monitor

Before he can go home, there are several tests that Landon's neurologist wants to run. First, he wants to run another cranial ultrasound to see if the amount of fluid around his brain has increased, decreased, or remained constant. He also wants to monitor his brain wave activity with an EEG to see if the activity recorded on Landon's admission has changed at all. Finally, he wants to run another blood test to check for the level of copper in Little Goat's system.

The copper level blood test is a significant development in diagnosing the condition that is causing Landon's signs. While we wait for the genetics micro-array to return later this week, the neurologist has put Menkes Disease on the table as a possible diagnosis. This disease is caused by a recessive genetic condition that causes copper to accumulate in some tissues and to be deficient in others. Menkes affects 1 of every 250,000-350,000 children born. While this is extraordinarily rare, what would make Landon's case unique is the very early onset of the disease. Most babies with Menkes are born completely normal and do not show signs until 3-4 months of age. Very few babies with Menkes survive beyond the age of three. A severe, early onset of the disease would be devastating.

While some of the symptoms of this disease fit (seizures, overall weak muscle tone, problems with temp regulation, and fussiness), there are some characteristic lesions that are absent. In an already rare disease, a unique presentation like Landon's where lesions develop in utero would be more rare by magnitudes. Landon also does not express the pathogneumonic lesions that give Menkes its more common name, Kinky Hair Disease. Landon's hair is thick and straight and not brittle. His facial features are not saggy and his neurologic lesions have shown up months too early. All things considered, Menkes is an unlikely diagnosis but every diagnosis is unlikely at this point.

As Landon continues to show improvement and Karen and I prepare for his time at home, we must consider what this means for our lives. Karen will probably not be able to return to work for as long as he is with us. We will have doctor appointments, often as many as three a week, in Topeka, Kansas City, Lincoln, Omaha, Chicago, or further afield. He requires a special bed, feeding equipment, tools for medicine delivery, and a subdued environment. I am already getting talented at working with hospital, government, and private aid organizations as well as arguing with insurance companies for coverage of procedures and equipment. So how can we bear all this? Why have we been challenged in this way?

Every day we are given the opportunity to choose our own attitude and approach to life. Karen and I have been blessed to find each other and, as a team, we attack each day with love. Love for each other, the Lord, our friends and families. When we approach the world through a lens of love, challenges are no longer grim fates to suffer through but moments to show the power of our convictions. The trials we face are temporary but the love we show for each other, our son, and those around us has the potential to spread like an infection and last indefinitely. Love can build a web of support to bear any burden, as our great support system has already displayed. We strive to grow closer together each day and our challenges only make us lean on each other harder. We face a painful path ahead with many snags along the way and there is bound to be conflict. But with an understanding of love and united faith we can handle any challenge. The burden we have been lain with is to love a little boy who needs an extraordinary amount and that is no accident. We have no doubt that Landon is our son because we can love him the way he deserves and the way only we (as a couple and as a part of the most outstanding support system in the world) can.

“Love is that condition in which the happiness of another person is essential to your own.” - Robert Heinlein

3 comments:

  1. That's very beautiful and so true! This brought tears to my eyes! I wish you all the luck in the world and my thoughts and prayers are with you!

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  2. You and Karen amaze me! Everything you have written (including that not so good stuff) has shown such acceptance, optimism, and pure love for your son. Landon is the luckiest little boy, and God knew exactly what he was doing when he blessed you with him! I wish your family all the best, and lifetime of joy, happiness, and love. I hope that you will be able to continue to write your blog, so that those of us following you may continue to read about Landon as he grows and accomplishes his many milestones to come! I hope you all enjoy your first night at home as a family!

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  3. So excited for Landon's homecoming!

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