We had no idea what we were really in for when our son was a few hours old and the OB nurse told us he had some stridor (noisy breathing) but appeared otherwise healthy. It was a word that we had quickly forgotten when we took our bundle home. It seemed innocent enough at the time, and we were under the belief that if it was something serious they would have sent him to the NICU.
The ignorance was so blissful, for a few short days. His stridor quickly turned into respiratory distress, which turned into chronic lung infections, which turned into chronic atelectasis (partially collapsed lungs), and other complications, which led not only to a diagnosis of bronchomalacia and chronic lung disease, but left our actively growing bundle attached to more tubes and wires than we were sure how to physically navigate. It turns out they left that chapter out of What to Expect the First Year and all other typical parenting books.
Footie pajamas became our best friend.
When you have a baby you are—of course—paranoid about leaving anything in the baby’s presence that could accidentally be wrapped around the neck. When you have a baby who is on home respiratory support, you are attaching things all over his body that are strangulation hazards. Now, of course there was nothing we could do to completely ease ourselves of the fear that he could possibly strangle himself, but we did our best to make that as least likely as possible. It was an ever-evolving process with each stage he reached. At the point when he was rolling over but not quite sitting up he was attached to an apnea monitor, a pulse oximeter, and oxygen. They included four cords that could potentially wrap around him.
Everything was a process. After securing his oxygen to his face and back, we would then feed the tubing down his pant leg and out a hole that we cut in the ankle of his footie pajamas. We did the same with his apnea monitor, securing each wire to his chest to avoid having to readjust them all throughout the night. Anyone who has ever heard one of these go off knows why. We then ran the wires down the same pant leg and through the same hole, repeating the same process with his pulse oximetry probe. Once all of the wires were together, we would tape them together with paper tape and plug them into their monitors on a shelf right outside of his crib, thus leaving very little tubing in his crib for him to get wrapped in. Even if he did wrap himself in it, it would wind around his leg and not his neck. As he got older we had to change our methods quite a few times, securing the tubing to the bottom of the crib leg and then to the monitors, or giving him enough tubing to stand. It worked for him and gave us some peace of mind, as much as we could have with our son sleeping with multiple strangulation hazards.
The Crawling Conundrum
By the time our son was crawling, he was still on continuous monitoring through a pulse oximeter as well as on continuous oxygen. At first he would only crawl as far as his monitor would allow, or with us following behind, until he realized he did not want to be held back by the limitations of cords or followed constantly by his parents. What fun is that? At this point he started trying to pull his monitor behind him, which resulted in many broken pulse oximeters and us scrambling to help aid him in his necessary independence while monitoring him as he needed.
The first order of business was securing the probe to his foot in a manner that would allow it to stay without affecting his delicate circulation. We found it best to reinforce the probe on his toe, and then again on the top of his foot with a small piece of tape. After we were sure we secured it comfortably and that he could still move all of his baby piggies, and without causing interference to the alarm, we put a small sock over his foot and lightly wrapped tape around the ankle of his sock. This assured there would be several places it would pull before it pulled on the delicate probe or his toe.
The next thing we needed to reinforce and adapt was the actual monitor. Because we were unable to get insurance to approve a hand held pulse ox that could have easily attached to his clothes, we had no choice except to find a way to allow him to comfortably crawl with the one he had. First and foremost, after he became mobile, we never placed it anywhere except for on the floor. Not only was this for his own safety, but pulse oximeters can really take very few hits before they are done. We just happen to know this from experience. In order to try our best to prevent it from needing to be replaced as often as his diaper, we had to reinforce the area in which his probe plugged into the monitor, so that not as much force was being placed on the plug pins as he pulled. We simply did this by taking some medical tape, or CoFlex if you have it, and securing the probe wire across to the other side of the monitor. This was not fool proof, but it did do the trick, although if we were to go back in time I think we might design some sort of custom skateboard device instead.
The Cannula Clothesline
Our son started walking at a typical age and “running” well before he was off continuous oxygen. This posed just as many new problems as it did excitement for our family. He certainly did not let his limitations hold him back in any way, which only meant that we had to continue to devise ways to make that possible for him. I have many a memory of our son chasing after his sisters, only to be clotheslined by the end of his oxygen tubing. Although he was rarely upset by it, it didn’t make for an optimum play experience. There was little we could do to prevent this, but we did quickly realize at this point that the longer his tubing was, the better. I believe it was the first time we ever felt so lucky to have such a small house and yard. Fifty feet of tubing was literally able to reach every corner of his play space without having to move his oxygen concentrator.
The three and a half years since we were handed that sweet bundle have been anything but what we expected, helping us to write the book as we go along. He has found all of his own ways to adapt and experience the world just like everyone else, constantly proving that nothing will hold him back completely, be it congenital respiratory disorders, or the mitochondrial disease that later became his diagnosis. Though we are grateful that he does not currently need his oxygen daily, no one knows what the future holds. The one thing I do know is that he will continue to lead the way, and we will follow, fifty feet and all.