Tethers: A Grandma’s Perspective

While I am immensely enjoying helping to care for and getting to know Teddy, who seems to get more alert and cuter with every day, I am also coming to appreciate the special challenges his new moms are facing.

One of the difficulties with caring for Teddy is that he can move only as far as the lines on his oxygen compressor and his saturation monitor reach. During the day, that gets him from a crib-like “pack & play” with his car seat in it to hold him (he’s supposed to be at a 45 degree angle most of the time because of acid reflux), which is located under the living room window by the porch, and across to the other side where there is a swing and mobile he likes. He also spends time in the rocking chair right next to the “pack & play” and on the sofa. In other words, he is limited to the small end of the living room that projects beyond the dining room wall and lines up with the porch. This makes it difficult when one needs to get to the kitchen to clean and sterilize bottles or to make up and heat a bottle or do other things like laundry or meal preparation. At such times he has to be left alone briefly, which is possible when he’s peaceful, but extremely difficult when he’s fussy, so I watch the time and try to anticipate especially the preparation of bottles (time-consuming, too, because the meds have to be measured out and added) in order to have them ready as soon as a hungry boy might vociferously demand one. Even moving around his limited area is difficult because one has to be careful not to trip over taut lines, which often get tangled.

He does move upstairs at night, but his moms have to carry up the heavy oxygen compressor, the monitors and an ice chest full of night bottles as well as his car seat, which is put in the crib up there.

He can be attached to small oxygen tanks when he goes out — to the doctor or for an occasional walk if it is not too hot outside. Then only one monitor has to go along, but the oxygen also has to be carried. He gets detached briefly every other day for his bath, which he loves.

As you can see, dealing with the oxygen is a pain in the neck, especially at times when he’s throwing a tantrum and his monitor is going off (most often, the cord is tangled or the probe on his foot is not working right). Overall, he’s doing very well holding his saturation level, and we all look forward hopefully to his next appointment with the pulmonologist (still a little over a week away) when we hope he may be given the go-ahead for no oxygen. It would be great if that happens before the move — the trip and life in general would be so much easier without his tethers!

Despite the challenges, all it takes is a smile or two from the boy to make it all worth it!