I remember at the beginning of this journey how I would sit at the computers in the NICU waiting room and write an update on our precious baby boy every week, usually on Luke’s “birthday.” I remember writing the blog titles “Luke is five weeks old!” We’ve come so far. I can’t believe the top of this blog post says “Luke is three years old!” What?? When did that happen? When did my 5 lb 10 oz deathly ill baby son turn into a word-loving, chocolate pudding-eating, sign-language using, bath-loving, tenacious and enthusiastic 31 lb, 3 feet tall, crazy little boy?? I blinked and it happened.
Not a lot medically is going on right now with Lucas, but I wanted to update everyone on his developmental progress. Hopefully this will be the most fun post I’ve written so far.
First, what we’ve been up to medically. I think I last updated everyone after Luke’s feeding program in January. Luke had bronchoscopies in February and April. During the February bronch, Dr. McClay removed a great amount of tissue from Luke’s airway. Most significant was the floppy tissue that he was able to remove. He wasn’t able to remove it during previous bronchs because of Luke’s small size. He simply couldn’t reach the instrument where it needed to be in Luke’s airway to remove the tissue. Luke was big enough in February, and Dr. McClay reported to us after the surgery that he was very optimistic that Luke would progress quickly. He set high hopes for us coming to the point when we would be able to remove Luke’s trach by late spring or early summer.
Luke did remarkably well for about a week. He was able to sleep during his nap quietly and relatively comfortably with his trach capped for several days in a row. Then he got a double ear infection accompanied with sinus and chest congestion. That made it significantly more difficult for him to wear his cap. The reduced amount of airflow to the upper airway allowed granulation tissue to regrow there, making it even less comfortable for him to wear the cap.
We got the ear infections under control with antibiotics, and another bronch was scheduled in early April so Dr. McClay could remove the granulation tissue. Ideally, Dr. McClay wanted a sleep study scheduled for two weeks after the April bronchoscopy. To my utter frustration, we could either have the sleep study five days after the surgery (too soon to really get a handle on sleeping with the cap on) or we’d have to wait until June or July. Well, Luke was supposed to be ready, right? So I scheduled it for April 14.
My parents graciously came and helped me with Luke at the sleep study since he had to be scheduled on a Saturday night, and David had to preach the next morning. My hopes were not high going into the sleep study, as Luke had only worn his cap while sleeping a maximum of 30-45 minutes. To pass the study, he needed to wear it for 3-4 hours. I spent an extremely frustrating night beside Luke in an ever repeating cycle: Luke would fall asleep; I would gradually cover his trach, and then finally get the cap on after multiple false starts. He would sleep anywhere from 5-30 minutes with the cap on, then stir (I don’t know how he ever stayed asleep with all of those wires and probes all over his face and head) and pull the cap off. Then I would wait a few minutes and start the process all over.
As expected, he failed the sleep study, but the night wasn’t a complete loss. I learned a lot about the best way to get his cap on while he slept. I also had a long conversation with the Respiratory Therapist there that night. It became quite clear to me that when Luke pulls off the cap while he is sleeping (just waking up enough to realize it’s there and then pulling it off) is primarily psychological. He spent so long not being able to breathe with the cap on while lying down, that during sleep his subconscious told him that still couldn’t do it.
Over the weeks since the sleep study, we’ve gotten better at getting him to sleep with the cap on, and even getting him to go to sleep with it on as opposed to slipping it on after he falls asleep. He’s still only able to wear it for a maximum of 1:15—which is an improvement, but not where we need to be to pass a sleep study. Still concerning to us is the work he has to put into sleeping with the cap on. Sometimes he’s able to sleep quietly and comfortably, but more often, he retracts in his sides and makes a terrible noise (strider) when he inhales. I have been starting to actually be fearful of decannulation because I don’t believe Luke should have to work that hard to sleep, even if the noise on its own isn’t concerning to his ENT (which I understand it not to be).
One last bit of info on his medical status. Two weeks ago, Luke’s speech therapist had the opportunity to observe Luke while he was sleeping with the cap on. He was making the strider sound and obviously working a lot harder than he should to breathe. It’s just concerning when he sleeps with the cap on and stirs every couple of minutes so he can get a good full breath. After observing him for a while and trying some experiments, Cherish believes that Luke’s breathing issues while asleep are not stemming from his trach/vocal chord area. She believes the strider is coming from his nasal passageways or possibly his soft palate or sinuses. She has reported her observations to Luke’s ENT, and I am waiting to hear from that office to see what McClay thinks about it. I’m hoping that we can get a CT scan scheduled as soon as possible to either confirm or rule out Cherish’s idea. If it confirms it, then hopefully we can get the problem resolved and still get to the point where he can pass a sleep study and get decannulated by the end of the summer. Our next sleep study is scheduled for July 31. That date is fast approaching, so I’m getting more anxious as the days go by. Please pray that we can go through all the channels in time and we can get this resolved as soon as possible.
Now for Luke’s developmental progress. He is AMAZING! Right around the end of March, Luke started eating significantly more than he’s ever eaten before. It’s like it just clicked for him. He regularly has four equal meals a day. He eats about 4 oz of pureed consistency food—anything from yogurt to Chef Boyardee to the pork chops we had for dinner. He’s tried lots and lots of different foods, and I’m getting great mileage out of my Baby Bullet blender. His favorites are still chocolate pudding and green vegetables (I’m not kidding, the kid loves peas!). He also likes savory things like beef stew. At each meal, he also drinks about 3 oz of Pediasure with fiber. He has graduated to having NO tube feedings during the day, and is tube-fed a supplement only while he asleep. He gets about 50%-60% of his daily calories from what he takes by mouth. That is a HUGE step up from where we were 6 months ago.
Verbally, he’s improving at a slower pace. He still only uses about 3-4 words appropriately and consistently: “Hi!” (which he says to everything, not just people), “Buh-bye!” and “Up!” (Sounds like “Up-pah!) He says “Daddy,” but prefers to use the sign. He can also say the names/sounds of multiple letters, just hasn’t put those sounds together to make words consistently yet. He is doing much better at signing. He’s learned and uses consistently dozens of signs. Right now we are working on the signs for animals, colors, and numbers. What has improved our communication significantly is the recent development that Luke can shake and nod his head appropriately. This seems like a small thing, but now I can have conversations like this: “Luke, do you want to watch Super Why?” Shakes head no.“Sesame Street?” No again. “Backyardagains?” Shakes head Yes! Success. He also tells me through sign language what toy he wants to play with when I put him in the car. Saves me having to guess. Having him be able to tell me what he wants reduces frustration around our house tremendously. I’m so grateful my son and I can talk to each other.
Physically, Luke is doing better. He can walk relatively long distances with enough motivation. It’s not until I making him walk away from the elevator at church that he gets tired and asks me to carry him (“Up-pah!”). He’s trying to run, but his running is more awkward and isn’t any faster than his walking. Just Sunday he successfully traversed down the three steps in the church auditorium without hanging on to anything for the first time. Most people were already seated for the service and cheered when he finished his last step! He can sometimes go up one step without hanging onto anything, but usually he still falls. He’s getting there. He loves the slide at physical therapy. Watching things roll down (his cap if he doesn’t have anything else!) never gets old. We’re also working on jumping (not so much progress yet there) and riding a tricycle. One of his most favorite things to do right now is to get out of his stroller and push it around himself. That’s what he did for most of his birthday party.
His occupational therapy is going very well. Occupational therapy addresses fine motor skills while physical therapy addresses gross motor. Luke is working on grasping a crayon and drawing lines and circles, stacking blocks, and unbuttoning buttons. We are also working on self-care skills like self-feeding, and putting on and taking off clothing. I love all three of Luke’s therapists, and so does he. They are so pivotal in Luke’s developmental progress. We would be nowhere near where we are without them.
We are also beginning to potty train. We are just at the stage where we’re introducing Luke to the concept, as he still is not able to appropriately identify if he’s wet or dirty (nor does he in the least bit care!). He sits on the potty every morning right when he wakes up, and he uses it about 50% of the time. We’re far away from a fully potty trained boy, but that’s not too high up on my priority list right now.
He still loves to read. He is constantly asking to be read to or playing with his many letter/word/reading toys. He knows all of the letter sounds by sight, as well as the sign-language letters by sight. He knows dozens of words by sight. It is amazing to me that he is able to read at such a young age after having a head-bleed and seizures in his first year of life. We are so proud of him!
I wish you could see Luke on a day to day basis. He is very much a little boy now. Almost all of the baby-ness is gone. We are both so proud of him. The best part about Luke right now is his hugs! Every night before going to sleep and sometimes throughout the day, Luke will give me and David the tightest hugs around the neck. I stay there as long as he’ll let me! He is so much fun and has so much personality and energy (way more than mom does, sometimes!). We still definitely have our frustrating, want-to-give-up moments. But getting to witness his development and personality coming through, getting to raise this amazing little boy is a privilege that blows my mind every time I think about it. Each day brings us closer to normalcy and farther away from all the terrors we endured throughout his first year. We as always appreciate your continued prayers. We ask you to pray specifically for understanding as resolution to any sinus/nasal/soft palate issues that might be preventing Luke from sleeping with his cap on. We pray continually for a swift, safe, and comfortable decannulation. We love you and count ourselves blessed to have you as friends, family, and prayer warriors.
Peace Be With You,
Rachael, David, and Luke
