This past week has been the busiest for Karen and me since my finals week one month ago. My externship at Blue Hills Animal Hospital in Manhattan has turned into a summer job and I’ve been working full time. Spending 8-10 hours a day at work and then caring for Little Goat at night certainly isn’t easy but it has been very fulfilling. It’s great to be building my veterinary experience but I know that the circumstances put pressure on Karen to care for Landon by herself during the day. His bacterial diaper rash has persisted and, while it is improving, he gets very fussy every time he fills his diaper. As it continues to heal I’m sure he will have better days and nights but right now, the rash creates a challenge in getting to, and staying asleep.
Landon has a busy day planned for tomorrow. In the afternoon, we are scheduled to meet with a surgeon at 2 tomorrow to check whether or not Landon is eligible for a G-button. Our genetic pediatric specialist has encouraged us that he sees no reason why Landon should not qualify for the procedure. Unfortunately, the upper GI exam that is needed for Landon to qualify for the G-button requires him to be fasted for 4 hours before the procedure. That means that, by the end of the procedure, Little Goat will have gone around 6 hours without food. That is a long time for such a little boy and I am anticipating a grumpy baby tomorrow afternoon and evening.
The G-button addition is unfortunate but we are trying to do what is best for Landon. The NG tube requires tape to his face that causes inflamed and dry skin and the tube in his nose and throat causes visible discomfort. We are told that the procedure will also reduce the risk of aspiration (accidental inhalation of formula) and that most babies with a g-button thrive better than those with NG tubes. As Landon has gotten stronger and is awake for a greater part of the day, we have noticed that he pulls his tube out more and more often. He tends to rub at the tape and we have to change it out every couple days. Every 7 days we switch the tube to the other nostril. This process has gotten easier for us but it is always uncomfortable for Landon, particularly if he is already fussy or hungry. We are hopeful that the different feeding method will alleviate some of these irritants.
Today was one of the days when we switched the tube from one nostril to the other. We removed the tube from his left side immediately after his 1 pm feeding and waited until shortly after 4 to reinsert it for his 5 o’clock feeding. Just before we put the tube in, Karen held Landon and observed his face for a while. He has thin red lines on both sides from inflammation from the tube and the surrounding skin is pink due to irritation from the tape. The skin on both his cheeks is dry because we can’t reach it to put on lotion for a week at a time. And despite the signs of pain, he looked peaceful and beautiful. It’s a shame to have half your little boy’s face covered every day.
I lubricated the end of the tube and reinserted it quickly and easily so that he only fussed and sneezed for a couple minutes before falling back asleep. I turned to Karen and expected her to be happy that the process seemed only mildly uncomfortable for him. I was surprised to see her frowning, lower lip out and moist in the eyes. When I asked why she just said, “He’s getting used to it. I don’t want him to be used to that.” It’s moments like that when our hearts break just a little and we remember how desperately we need all the love and support that has lifted us up since Landon was diagnosed with his condition.
Such is the challenge of loving Landon. We get to see all of his tiny triumphs and cherish the lessons we can learn from him but we also must face times each day of the lowest lows, where you as yourself “How can I keep doing this?” The only answer I’ve found is to live each day with prayer, a willingness to ask for help or support, an open heart, and the knowledge that our legacy is not about being perfect but rather about touching other people’s lives in a positive manner. And for that reason I write the blog, so that Landon’s legacy is not only for Karen and I but for as many people as will read it. If the lessons we learn from this experience can help even one other person stay strong through their own trials or encourage someone to pray for and reach out to another in need, then I consider this message a success. Please know that we thank God for each of you reading this blog and supporting those who need love, including our little family.
“Where there is love, there is life.” – Mahatma Gandhi