The tapestry of the life of a medically complex family

Activity Tolerance

Yesterday we went for our second music group with our pulmonologist and other NICU graduates. The pulmo spoke about being aware of our kids respiratory baselines & to pay attention to their activity tolerance and share that info with he & our other docs. I have long been aware that my children have increased fatigue & reduced activity tolerance-especially Trachboy. Yesterday into today illustrated this more than ever to me.

All 3 kiddos were gotten up a bit early, fed & readied for a day out. We drove to our children’s hospital, about an hour away, then I put the twins in the stroller and wheeled them into the room used for the group. Trachboy was only off oxygen about 35 min in the early morning for nebs to be delivered, otherwise he was attached to a 1/2Lpm flow on portable and home tanks. At the class, he showed clear evidence of “stress” by being 100% physically withdrawn & having an elevated breathing rate (RR) of about 35 while seated.

After 1.5 hours of sitting theer, we went a few blocks away to “visit” a friend staying in a hospital residence while her son heals from heart & trach surgery. While there, he walked indoors, was off oxygen to use the bathroom (2min), and we sat on the front porch to eat lunch- for him 7oz of peanut butter milk. He sat there maybe an hour, while his sisters got to march back & forth on the porch after finishing a pretty full picnic lunch. Although it was in the mid-40s & eating is hard for him, there was no real exertion in our trip. He rode home attached to oxygen as well.

When we got home, his activity level was okay, maybe a little subdued, but he played after a neb, the Vest & snack, for the 2 hours until dinner. Dinner of 2-3T of stew took an HOUR- usu a sign of fatigue. After dinner, we essentially brush teeth, toilet, sometimes read books (if we haven’t read a lot earlier) and tuck in for night nebs before sleep. Trachboy sang me the good night song with a tight, soft volume voice (compared to usual). He then almost immediately fell asleep during the first neb and slept through morning nebs given later than usual (about 14 hrs of straight sleep). He also only satted in the mid-90s (94-95) throughout the night on 1/2Lpm (usually rebounds to 99/100 by 11p or so). Is simply riding in a car and sitting in a group too much for him?

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