The tapestry of the life of a medically complex family

The reunion between the twins was such a sweet moment it’ll get billing here, 3 years later! Trachgirl was just getting up from her nap when Trachboy & I were delivered home by med transport. The guys carried him in and Trachgirl sat up in her crib and gave her best “happy surprise” face- a round, open-mouth “surprise” with wide eyes and raised brows. Then she madly gestured that she wanted out of her crib and, fearsome visitors be hanged, she rushed to Trachboy and gave him a cheek-to-cheek hug, trailing her mist tubing behind her.

The overnight was difficult. Trying to manage Trachboy’s pain with the tylenol with codeine while he reacts to the narcotics- thanks again for the pre-natal cocaine baths, universe. He is agitated frequently and wants to be held all the time. His crying is silent but he is tolerating his feeds so at least that is going well. I will check in with the surgeon today about what else we can do to ease things for him- although Trachgirl’s surgery is our main focus of the day.

Trachgirl went under anesthesia pretty well today. It’s always a bit unnerving to watch her drift to the brink, kiss her head, and walk away, trusting that the anesthesiologist is “on his game” that day and going to return that same feisty, cheery kid back to you in some hours. They called me mid-way through her surgery, after the rib was harvested, which struck me as funny since they never updated me during Trachboy’s surgery and we did that one first! She progressed through the surgery as expected and was transferred  to the PICU for her overnight of sedation. The surgeon was not pleased with my report of how Trachboy’s stay had gone so he had her placed in the bed off the nurses’ station, hoping proximity to their “social area” would get her more attentive care. It was a false hope. They assigned a woman who was a mother of twins also- so she said- and they worked on me for hours to convince me to go home and get some rest. I finally left because Trachboy was having such a difficult time at home and the overnight nurse had called out.

Trachboy’s pain was out of control when I got home. He was panting uncontrollably, we upped his dose of #3 and he drifted into a fitful sleep. He was no longer tolerating feeds so we feared he would soon be dehydrated and called the surgeon early the next AM. He returned a call by 7am and instructed me to bring Trachboy into the ER to be admitted to MEEI for dehydration so the docs there could work on finding the balance of meds to manage his pain. I packed him up and headed in to one of the longest days in my parenting of them so far.

Trachboy was admitted to Mass Eye & Ear Infirmary that morning after a fight with anesthesia about how they would place the IV- topic for another blog post! We settled into room 1, over-looking the bridge and riverfront, right off the nurses’ station. With Trachboy properly ensconced with caring and skilled nurses, Nana for back-up, given the changed pain meds (tylenol only, no narcotic!), I headed over to the PICU where Trachgirl was still supposed to be under sedation.

I arrived to Trachgirl wide-awake and agitated in her crib. Her look of relief as I entered the room said it all. She had been transferred to one of the inept nurses we had had with Trachboy, and she had been trying to figure out what to do for a feed since there was no GTube! This nurse departed as soon as I arrived since she knew Trachgirl would be fine and we waited for the fellow to show up with our walking papers. Today’s PICU attending was the one who actually examines patients (yes, there is one who TALKS about them from the hallway and NEVER examines them, IMAGINE!). She checked Trachgirl out and told me about the report of her night- she had required HIGH doses of sedation to keep her under and they determined that giving her more in the AM would not be an option. Apparently another benefit of the pre-natal  drug exposure and extended NICU stay. Trachgirl was having her pain managed by tylenol only as well and we would be transferred as soon as possible back to MEEI with Trachboy. We saw no one else during the remainder of our stay there, unless I buzzed someone to get pain meds for Trachgirl. Finally, about 2pm, paperwork was finally completed and we moved to MEEI where we would stay as a family in our room with a view.

Trachgirl would not be fed until after she was able to pass a swallow test that indicates no aspiration on oral feeding. This was scheduled for the next day and Trachgirl slept fitfully with her IV fluids and pain meds administered on a schedule so she didn’t have pain get ahead of her like it had Trachboy. Holding the two infants in my arms that evening, stretching IV and monitor wires to their limits between the cribs, we felt like a family again.

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