Saturday, April 27, 2013

Handling the Rough Days

Day 6

Today was a tough one in the life of Landon. During feeding, shortly after 6 o'clock this morning, Landon suffered a small seizure. We reported the incident to his nurse and he was reconnected to the ECG and apnea monitors he had been on this week. He was very alert, active, and upset for most of the morning and during his noon diaper change he suffered another seizure. This noon seizure was his most serious so far and put his health in significant danger. Landon failed to breathe effectively for almost two minutes during this particularly strong episode. We weren't in the room but his nurses responded to his drop in blood oxygen levels quickly and were able to stabilize him with some supplemental oxygen.

He had one other small seizure later in the day but nothing else that interfered with his breathing. We have attributed this increased frequency of episodes to a small change made to his phenobarbital dosing regimen. To ease his transition to home, Landon's dosing was reduced from 4 mg of phenobarb twice daily to 8 mg of phenobarb once daily. The problem with this dosing regimen is that the level of drug in his system fluctuates too greatly, with a higher high right after administration and a lower low just before the next dose. The result is that he is more sedated at times and more awake, and prone to seizures, at others. While this change may not be the sole reason for his increased seizure activity, I am confident it is contributory and have asked the staff to return his dosing to two smaller doses. There was agreement that this could lead to an improvement and the dosing schedule was changed.

At 2 this afternoon, Landon had his second hearing test. Unfortunately, he failed in both ears on this attempt, having failed in only the left on his first try. The technician was able to get responses in both ears but his hearing may be reduced, although we do not know to what degree. He will have an appointment with a specialist after his discharge from the NICU. However, due to the recent seizure activity and spells of apnea, Landon's discharge has been moved back to Thursday at the earliest. Hospital policy is to wait 5-7 days after any apnea spell that causes his oxygen saturation level (the amount of oxygen in his blood compared to the maximum amount of oxygen his blood is able carry) to drop under 80% before a baby can go home. His level dropped to just under 50% during his strong seizure today.

Another small change made today is that Landon will require an apnea monitor when he's at home. The monitor will alert us if he has has periods of shallow or complete stoppage of breathing. The idea is that we will have time to intervene and stimulate him to breathe in the event of a severe episode like the one he had today. I'm unsure of whether we will have an oxygen assist device at home to help him in a truly dire scenario or not. The events of today and concern for the future are understandably worrisome. I am confident in our ability to provide care and recognize a serious situation but it is hard to be comfortable knowing that your child could be in very real danger and the only thing standing between him and the worst is your ability to intervene. Although I'm anxious to have him home, I am glad he is staying in the NICU a bit longer until he is more stable. I refuse to put his health at risk for our own convenience and finances.


Our silver lining on this dark cloud of a day was that some of our closest friends and family were able to hold Little Goat for the first time. My and Karen's parents (Kurk, Kris and James, Denise respectively) held him today for the first time since his admission to the NICU, and my sister and brother-in-law (Mikaela and Brandon) and Karen's younger sister (Jamee) held him for the first time ever! Luca and Jess, two of our closest friends, visited and held Landon for the first time as well. I would like to give a special thank you to Luca and Jess for being a pillar of strength when I needed one on the night of Landon's emergency transfer. They came to the hospital, knowing nothing of Landon's condition, and stood strong to support me when I needed it desperately. They have been a blessing in our lives for so many reasons but that particular moment is a testament to their incredible character.


I will resist the urge to thank every person I want to by name as this is no academy award speech. However, I will say that our family has proven itself second to none at every challenge and our friends, near and far, have blown away my former understanding of a friend's capacity to assist in healing. To my classmates and the rest of KSU CVM, you have gone above and beyond what can be expected from any reasonable group of colleagues and have proven yourselves much more than that. You are an unreasonable group of incredible kindness, outrageous generosity, and abundant enthusiasm. We continue to be thankful for the hard work and skill of our NICU nurses and doctors as they tirelessly pursue answers. Finally, I would like to thank the members of my home church and all the churches and prayer groups lifting us up for their fervent prayer and for representing the spirit of Christ in your actions and words.

Most of you might not know that I have quite a fondness for fantasy and adventure stories. One of my favorites is the Lord of the Rings trilogy. Today, while considering the reasons why Landon might have fallen into the care of Karen and I, I was reminded of a small excerpt from The Fellowship of the Ring.

“I wish it need not have happened in my time," said Frodo.
"So do I," said Gandalf, "and so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us."

May we all rise to the occasion and meet the challenges in our lives head on and with fortitude.

5 comments:

  1. As I read through all your blog entries about Landon's journey I am reminded a quote from my favorite fantasy series: Harry Potter. "It matters not what someone is born, but what they grow to be." - Albus Dumbledore. There is also the sentiment "Happiness can be found in even the darkest of times, if one only remembers to turn on the light." So let your small moments of happiness with Landon keep you comforted through your dark times. He and you guys are in my thoughts and prayers always.

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  2. I'm sorry to hear that Landon had such a rough day, but am very happy to hear that he was able to snuggled, cuddled, and loved by his extended family--it must have been wonderful for all! Seizures and breathing difficulties are definitely scary, but Landon is lucky to have parents who are proactive and have asked the team to reconsider his medication dosing schedule to hopefully alleviate a little of that apnea. Are they planning to send Landon home with an O2 sat monitor?--I cared for some children that did (mostly heart defects though). I continue to keep Landon (as well as his Mommy & Daddy) in my prayers, and hope that you will soon be bringing your Little Goat home!

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    1. Thank you for your prayers! The apnea monitor we are going home with is equipped with an O2 sat monitor as well. Hopefully this will help Karen and I have some peace of mind when he comes home!

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    2. I am a friend of Liz's and I've known her since 2000. We were inseperable. I haven't seen her or been in contact with her for some time, until the day Landon was born. Now that I've reconnected with her and Denise I think God did it on purpose, for you guys and Baby Landon. I look forward to your posts literally every day! Right when I first look at my phone, I go to Denise's profile, and look for Landon's adventure. I don't know if Karen remembers me or not, but I just want you to two to know I am and have been praying for you. Keep ur heads up, you are doing awesome!!

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  3. Please know I'm praying for you and your whole family. You are both an example of seeing the best in life and the blessings of God. I'm moved to tears with every update. Dawn

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