I haven’t written all week this past week. I haven’t done a baseline update in SO long. I have taken my kids out and done family memory-making and visited friends… And I now remember why we stopped.
My kids get sick every time we go out. Not just the trached twins but my other preemie as well. We went to the RedSox game (a Wed.) and had Scarlet Fever rash within 24 hours, full coverage on the girls by Sat AM when we went to the doc. Positive strep cultures from sitting at a game enjoying ourselves- in the heat.
This week, we went strawberry picking on Wed. and took the kids to the mall [sat in stroller] & to visit a friend on Friday afternoon/early evening. By late afternoon, Tav was congested, thick secretions. Nurse left at 10:45p after we got home & meds were done. Saturday morning was an emergency trach change morning after a night of suction need and 2 extra overnight saline nebs. Vomiting ensued for Tav throughout the AM and when he fell asleep and needed 4L of oxygen to maintain 93, I knew we needed to re-hydrate via IV if I could hope he would be better. All my “backup” was either out of town or had big plans for ‘fathers day celebrating’, so we headed in all together.
The hospital docs did not want to have us leave after the IV fluids and antibiotics. They wanted to admit Tav and have me leave with the girls. Tav does NOT communicate at all in a hospital [even his pedi has RARELY heard him utter a sound]. Tav tenses his leg muscles to indicate distress- severe distress by the time he is contracting his calves- hospital staff won’t be able to read that. After calf-tensing, Tav will escalate into a breathing compromising tantrum- silent, frantic, secretion-producing… He is NOT a child who can be left alone in a hospital setting. The ER docs set us up on 2 stretchers in a larger ER room and the girls slept on one while I laid awake next to Tav overnight. It has completely wiped me out. They finally let us go home in the AM after repeat labs.
We can’t go out again. We need to return to lock-down lives and remain there until… who knows when. ANY outward adventuring is a significant risk to my children. A difficult reality, but it is our reality. And somehow in “lockdown”, I need to meet new friends to add to the “backup” pool… ongoing challenges of the complex medical life we lead.