Every new parent has a few skills to learn before they are able to bring their child home. Everyone learns how to change diapers, put on onesies, warm up milk, sanitize bottles, and on and on. With the special challenges Landon faces, Karen and I needed to master some other skills before we could properly care for him at home. Today we were instructed on the proper technique to place an NG tube for feeding him. Although I’ve performed this procedure several times on puppies and kittens, placing a tube on your son is a very different experience. Karen switched out his tube before his 6 o’clock feeding and I was very impressed with her calm and skill. She could have been quite a nurse if she’d wanted.
The NG tube change capped a very stressful day for Little Goat. An occupational therapist visited him this afternoon to evaluate his muscle tone and joint flexibility. Although he is weak overall, he passed his test and she was very pleased with his progress. One of her discoveries was that Landon actually has feeling in his right leg! When the first neurologist performed his exam one week ago, he could not get Landon to respond to pinches or pokes on his right leg. We were concerned that this may mean he had no sensation in that leg but, in the grand scheme of things, that was a minor worry. Obviously we were very surprised when he curled his little toes around her finger today! His feeling and strength in that leg are limited but we are hopeful that there will be more progress.
Soon after the OT tested Landon, we had a few visitors. Our good friends Brit, Steph, Tayley, and Whitney dropped by to see our little fighter and were the first non-family members to touch and hold him! Landon was grumpy from having been worked over for his exam but it was wonderful to see him so awake, even if it was so he could scream at us. The anti-convulsant medicine he has been on has been sedating him so that we rarely hear more than a whimper. Today we were blessed with wide-eyed attention and more than a few outraged cries. I’m sure I will eventually grow tired of his crying but I am enjoying the chance to see some of his personality peek out right now.
Sadly, due to overstimulation from his therapy and uncomfortable NG tube swap, Landon suffered a major seizure today. For almost 30 seconds, Landon’s eyes rolled back, his fists clenched and unclenched, arms and legs jerked, and breathing became irregular. Episodes like this are terrifying, even in the relative safety of his hospital room with monitors attached and nurses at the arm. You feel absolutely helpless and the unfortunate truth is that we are. Our only recourse is to patiently wait for his attack to subside and then remove as much stimuli as possible from the room. Quiet sounds, dimmed lights, and minimal touching. The urge to rub his back or hold his hand is tremendous but we’ve been advised to restrain ourselves. When his episode finally ended Landon resumed crying until I stood up with him and very gently rocked back and forth. He has been sleeping well since then, as would I after such a traumatic day.
The best news of the day is that Landon sucked on my little finger very well over several minutes this afternoon. While he hasn’t shown the ability to “suck, swallow, and breathe”, his increased coordination is encouraging. Eventually, with continued improvement, we might attempt to bottle feed him. Talk about a milestone we never expected to reach after the initial diagnosis! One of our biggest concerns has been limiting the number of major surgeries Landon has to go through but having a gastro feeding tube put in was one we thought was inevitable. I have never wanted to be more wrong and Landon seems determined to surprise me in some way every day.
Karen and I are staying in the hospital tonight so that we can care for Landon by ourselves (with help right around the corner should we need it) in preparation of going home. I’m sure we are supposed to comfortable sleeping at some point but our hearts are in our throats a bit with the responsibility of caring for such a fragile little man on our shoulders. He really is beautiful to watch sleep though. Being so close to him at night feels pretty wonderful; like no matter the challenge, everything is going to turn out OK because we have the love we need to get through it. For tonight though, we’ll be quite satisfied with Twinkle Twinkle Little Star on the speaker and a little family bedtime prayer.
Now I lay me down to sleep
I pray the Lord my soul to keep
And in the morning when I rise
I’ll see God’s world with my bright eyes
God bless Karen, Landon, and Me