The tapestry of the life of a medically complex family

Archive for the ‘“the Ugly”’ Category

Reconstruction with Rib Graft, Part 2

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.

Reconstruction with Rib Graft, Part 1

A month after arriving home, the twins both needed surgery to correct the narrowing near their vocal cords in their airway. The ENT explained that there was scarring and damage in both their airways because they were so small and intubated immediately, and then repeatedly when Trachgirl removed her own tube or they wanted to trial them breathing on their own… The upper airway of both kids was so obstructed and narrowed by scar tissue that, were the trach ever to fail, no doctor would be able to intubate them from above to save them. That was all the convincing I needed to get things done as soon after their arrival as possible. The surgery has two parts; first harvesting a rib for cartilage and second grafting the cartilage to the inside of the subglottis (area under the vocal cords) and placing the stint that holds it in place until it heals, fused to the area as additional rigid support for a more open airway. This surgery would not restore my children’s airways to a level where the trach would not be needed, but would hopefully improve their ability to make more sounds and make them safer in case there was a problem with their trachs.

Trachboy went into the hospital first: July 19, 2007.  1 year, 4 months & 17 days old; corrected age: 13 months. He had made only one sound before going in for this surgery, a sort of “aah” as air mistakenly escaped through his damaged vocal cords. He went in early in the morning and was not moved to the PICU to begin recovery until after noon. He was so small in the giant PICU crib, connected to tubes and wires, getting support to keep breathing while he remained under sedation for the first night. I went home that night to be with his sister, the docs convinced me there would be no reason for me to stay- it will NEVER be something they will be able to convince me of again. As my mother and I got into the car to return to the hospital, Trachboy’s PICU nurse called to ask if I would be able to bring in a GTube extension so she might be able to feed him. She then asked me if his GTube was a Mickey and if I knew what size it was… To which I replied: “Well, although it is WRITTEN ON THE TOP OF THE TUBE, it is a 12fr-1.0”  WHO had I left in charge of my tiny child?? Although I had been told they would be able to begin feeding my underweight micro-preemie overnight, I learned on my way back in that they did not have anyone there who was able to attach a GTube extension – HUNH!?!?!?!  This was my baptism into the sisterhood of the PICU mommas.

I did not leave Trachboy’s side again while he remained in this “highly specialized” place where no one seemed to be around when they were needed, where their excuse to me was that they had “just doubled the beds while operating with the same staff”, where I did all the suctioning as my son’s oxygen levels dipped below acceptable levels or while he panted frantically waiting for someone to finally bring the morphine I asked them to get when he was beginning to show signs of pain. At one point, I unwittingly fell asleep and Trachboy’s panting woke me. He was covered in sweat, frantically kicking his feet, writhing in pain. When the nurse arrived a few minutes after I pressed the nurse call button, her first concern was his soaked bed… ??? What an experience. I learned to ask directly for what my child needs. Ask immediately for pain meds when the time is nearing that they may wear off. They moved us off the unit to a regular floor where our roommate had a family reunion in progress when we arrived from the PICU. The nurses on this floor were better than the PICU but I longed to leave the flying matchbox cars and spanish Jerry Springer as soon as possible!

The highlight of our stay was the return of the ENT fellow who asked me if I was ready to go home after one night of step-down from the PICU- I let him know that I was ready but if he thought I needed to be under the direct supervision of a doctor, I would be happy to share his living room couch with Trachboy for the night! He got our discharge paperwork in order and we rode home on medical transport. As I settled the twins into their nursery for their one night together before Round 2, I seriously wondered if I would be able to survive trying to manage him at home and her in the hospital.

Just a job

Last night I got confirmation of my fear: the nurse who has been with us for 3+ years is leaving for a day job somewhere else. She needs benefits for her family so I can’t blame her but sometimes I forget that my children are “just a job” for so many people who come into their lives. How do I protect them, or me for that matter? People come into our home, they are caring, helpful, loving. My children quickly grow to love the good ones. They learn the schedules, routines. Each of my three little ones anticipates the arrival of their favorite(s), knowing which nurse comes after which shift. Then their favorite nurse leaves…

Today I am crying, moping, trying to keep my sh*t together. I have not told them. I have not warned them. I am trying to manage the stress of all else that is going on with the definitive loss of more than half my nursing shifts in little over a week. I will be moving from about 16 shifts/week back down to 7.  55 hours seems like a lot of time to have a person in your home helping you care for your kids… until you look at the fact that 28 of those hours are while the children are in bed, over 3 nights, the only 3 nights you can sleep- but not until after 11p since you have to be up to let the nurse in, to “report out” on the events of the day, to communicate relevant medical info. and be sure that treatments begun since their last shift will be continued overnight. Then you go to bed and toss and turn until you either manage to fall asleep about midnite or you go back downstairs at 1230/1 a.m. to get benadryl or headache meds to HELP you to fall asleep… until you awaken in a panic after 4 hours because your schedule the other 4 days is getting up to check on the kids and be sure their breathing tubes are in place, CPAP masks are on, respirations seem normal… or on nights when they are sick you spend most of the night up doing breathing treatments every 2 hours, across 3 beds, hoping to catch some  ZZZZZs in the 90 minutes in between.      3 1/2 years of this – averaging about 35 hours sleep/week on the best of weeks.

Then the day shifts, well they do the 8-35 breathing treatments that occur daily in your home (8 is the minimum with 4 for Trachboy and 2 each for the girls). The nurse checks respirations, heart & lung sounds, trach & gtube patency; provides sponge baths, trach care, trach tie changes, gtube care and chest PT; monitors respiratory changes during play and other activities and monitors for aspiration during meals or feedings. When there is no day shift all these tasks fall to me, on top of the upkeep of the house, scheduling and following up of medical care appointments, reading stories, playing games, ordering oxygen & medical supplies, and all other single mom roles. The new schedule will hold only 2 weekdays with day-time nursing coverage…

Most (lucky) children go through life with one or 2 caring adults in their home who love them and manage the day-to-day for them. These *parents* are stable persons, present throughout the child’s life, through ups and downs, sicknesses & well-times. Other adults are encountered outside the home and may be transitional, temporary. These adults may support the family but are distinctly separate from the “family” of home.

My children were born through cocaine-induced labors, grew weeks to months in hospital settings where caregivers changed on 8-12 hour rotations across a day, 10-20 caretakers/week. They then were separated from all they knew, moved to either a new hospital or to a foster home- a temporary place which held caring, yet still paid, persons who watched over them, with shifts of other paid professionals moving through to play with and help care for them. Each of my children “lost” these families, however unusual the circumstance, to come home to me, the woman they were *grown for*, their mother and one parent they will ever know… And yet each week, they come into contact with others in their home whom they love and cherish and include in their hearts as family. These people, our nurses, are transient as well. Something happens, the nurse’s life moves on: job opportunities, weddings, parenthood… and my children “lose” – again and again. To these men & women, although they are wonderful FABULOUS nurses, who usually also love my children, my children are “just a job”; a job without great health insurance, without room for advancement, a job that sometimes needs to be replaced with one that HAS these opportunities/benefits, one which might eventually benefit their career & lifestyle.

How do you look into the eyes of your 4 year olds and the eyes of your 3 year old and tell them they are “just a job”? While their hearts are breaking and they are again learning to distrust? It’s “just a job”…