The tapestry of the life of a medically complex family

Archive for October, 2010

Riches

Saturday night I had a conversation with a person I knew in high school. She is reaching out and connecting after a flop of a reunion resulted in a 3-person turn out for appetizers and a beer! She talked with me about her life now, the challenges and wonderful things that have happened for her over the years, along with how amazing her daughter is. She feels that her daughter is kinder, gentler, more compassionate than she herself was growing up. She talked about how her daughter regularly asks her to travel to my facebook page to see updates or photos of my children, how she fields questions about our lives, health and how adoption works or our family came to be. She told me her daughter asked about whether I was rich and she said she explained to her that I was not. I understand that she meant with regard to monetary riches but I believe I am one of the richest women in the world.

Each day I have the privilege of watching the growth and development of my 4 children. I am there to wipe tears, celebrate accomplishments and trouble-shoot oncoming challenges. I do, as people say, “have my hands full” but each day my heart is also brimming. The struggles and challenges we face each day do not go unnoticed by me, but each day my children are well enough to stay at home, to get out of bed, to play, fight and give me a hard time- those experiences enrich my life, make me more aware of my riches than any king or dignitary from any land.

My children have brought me along on their protracted and arduous journey. They have crossed the Himalayas of childhood experience and we live at the base of yet another mountain range, but their existence has enriched my life beyond the measure of all journeys thus far. As a family, we are rich in our support of each other as we address the “richness” of challenges, breathing treatments and medical appointments. While we persist in reducing the richness of hospital visits, emergency room trips and ambulance rides, we thank the universe for providing the richness of being together, learning and growing. As a mother, however uncertain the future, each day I am rich in love, in laughter and in the most valuable of all commodities: time.

Reconstruction with Rib Graft, Part 4

The events of the NG experiment weighed heavily on me the next day. When I spoke with the fellow, he agreed that starting slow “listening to the Momma” might have been a better idea. He told me we could try it again and run it slower or have her stick it out for 2 more days until she could try to pass a swallow the day after the stent was out. I opted to wait. She had already made it nearly a week, 2 more days would not be much longer.

By this time Tav had begun to feel better and was playing more actively in his crib. He was taking all fluids through his GTube or by mouth so he no longer had an IV. Sometimes I would place them together in Adrien’s crib so they could snuggle together or play with small toys. Fortunately we got through the next few days without incident. Adrien’s follow-up x-rays did not show progressive pneumonia from the aspiration and she handled the removal of the stent well.

Her swallow study the next day cleared her for nectar thick liquids and she happily took her first bottle in over a week while in my arms. Things were definitely looking up. The hospital scheduled us to leave the next day and visitors from the Dept. of Social Services & our Community Medical Alliance team spent part of the afternoon with the kids and I. It was during this visit that we learned there was a new baby and tried to wrap our head around what that might mean to us as a family.

When we headed home, Tavi went in the car with a nurse and Nana while Adrien & I rode medical transport to ensure a safe trip. The joy and ear-to-ear smiles on our arrival back to the home playroom were priceless.

Within a couple days I returned to the hospital for Tav’s next follow-up bronk. The docs were thrilled that the repair had held. He did not require any dilation of the area in any follow-up bronk post-op.

Adrien was another story altogether. The ENT fellow had explained to me that the usual course post-op was that things look amazing on bronk #1, then bronk#2 is usually when they scratch their head and wonder why they put in all the effort. This was the case for Adrien whose airway had swollen back to the narrow pinhole she had had pre-op. With balloon dilation, they were able to open up her airway to a better size and she returned weekly for another month to continue the process of opening the subglottis. The appointments were then spread out to every two weeks and dilation continued until about 2.5 months later when they determined they had gotten the result they were going to get with her.

Several months later, my house became a home of sounds and giggles, words and some phrases. By just before their second birthday, both twins had found their voice and begun to use phrases with their signs to communicate. Since that time, communication has been mostly by voice- quieter than most young children their age, but quite a miraculous blessing considering their start.

Reconstruction with Rib Graft, Part 3

The nurses at the Eye & Ear are wonderful and caring. They worked hard to support my kids through the pain and discomfort of their recovery from airway reconstruction. They checked in on us frequently and, between the two beds, they were kept busy with IV adjusting or replacement and drain/wound care.

While they were terrific and friendly, my children responded with terror at each new person who walked through the door. They crawled to the side of their cribs where I was closest and tears flowed freely. They would wriggle frantically, crying soundlessly, trying to climb through the bars into my arms. I spent nearly every waking moment seated between their cribs, holding and rocking one or both of them. For each neb or procedure, they would sit in their crib, reaching immediately back to me as soon as it was over. After 3 days of fielding questions about whether they were “always this difficult” from a support staff member at the hospital, my insurance company approved skilled visits by the nurses who worked in my home. The relief in having that second set of familiar hands, a person who could spell me so I could SHOWER or eat a meal- which I had to do outside the room or during their sleep because Adrien had not been cleared for anything by mouth since she failed her swallow.

Tav’s first bronk post-op got the “thumbs up, A-ok” seal of approval and the stent was removed. It had been a week since we had tried anything by mouth for him so I worked at re-introducing the bottle in a chair outside our room while a nurse spent time with Adrien, 3 days into her post-op “fast”. Adrien signed milk at least 100 times per day, at the arrival of each person, because her hunger now exceeded her fear. For the next 3 days she signed madly, cried silently, batted eyes at each and every arrival, BEGGING to be given something, anything by mouth. On day 5, after much urging from me, the docs finally ran a blood panel. A resident said her bloodwork was “normal” to which I replied: “Geez. That IS gonna save me some money.” implying the no food option being equal to the food option seemed a “win-win” from my perspective… <sarcasm>

The fellow came in afterward and went over the bloodwork with me, told me about a change in her IV fluid make-up to balance some things out, and talked about putting in an Nasogastric-tube (NG) to give her some nutrition. I agreed to the NG, knowing she would have to be confined to her crib during feeding and that “welcome sleeves” would need to be applied to keep her from reaching her face and pulling the tube out, but hoping that the filling of her belly would help her to heal faster and be happier. When the nurse arrived with the feeding, she put it on a bolus rate and told menot to worry about it being too fast- after all, she was starving hungry and a full belly would only “feel good”. The feed began at about 10:45p, just before shift change, and the nurse left soon thereafter to report-out to the nurse who would be taking over for the night. Adrien sat in the middle of her crib looking like a beaten and defeated child: surgical scars and adhesive sutures, NG tube taped in a trail across her face & head, “welcome sleeve” arm braces to prevent her from getting her hands on her new “feed equipment”. She leaned back on the inclined crib surface and at about 10 after the hour, she began to vomit.

Adrien immediately aspirated the formula through the cleft from the stent, at which point she crashed, sats plummeting, alarms sounding, nurse running to our room. As her sats dipped to 68%, Adrien blacked out into the pool of her own vomit and I continued suctioning while the nurse ran to the nurse station to make the STAT call for the doc to get to the floor. Her heart rate dipped low, the docs arrived and re-assessed her as she returned to more stability. After a consult with our ENT, the resident removed the NG, radiology came to the bedside for a lung xray, and we waited for her EKG to be completed to be sure her heart rhythm had returned to normal. Sleep that night was a non-option for me. I spent the rest of the night seated next to her crib, holding her upright in my lap.

Not Asked For

I know you did not ask for this
family arrival, challenged, challenging.
I know you could not say yes
when asked to do more than you can.
THEY did not ask for this
Abuse, separation, alienation from birth
They did not ask for their challenges
to be a burden by birth and adoption
I asked for this
to welcome, to love, to hold
I asked for this
believing in their potential-
in their right to the support needed to achieve it.
I will continue to ask
continue to work toward their successes
continue to strive for their acceptance in this world that did not ask for them.

When professionals ask for you to do more than you can…

“How are you?” people ask
but they don’t want to know

Floundering, suffocating,
ready to blow

“Fine” say your lips
while the thought bubble reads:

‘I wish there were some way to meet half our needs’

When some try to help
provide lists, recipes

They realize so little
see no forest for trees

When I say “I can’t”
they reply with “poo-poo”

They “know how it is”
and it’s “easy to do”

I hear how I *chose* this-
no right to complain

While they lay the track
that will derail our train

I know that I’m whiny – with no right to be-
but please don’t diminish what it’s like to be me.

-Gretchen Kirby
7-7-09

Reconstruction with Rib Graft, Part 2

The reunion between the twins was such a sweet moment it’ll get billing here, 3 years later! Adrien was just getting up from her nap when Tav & I were delivered home by med transport. The guys carried him in and Adrien 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 Tav and gave him a cheek-to-cheek hug, trailing her mist tubing behind her.

The overnight was difficult. Trying to manage Tav’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 Adrien’s surgery is our main focus of the day.

Adrien 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 Tav’s surgery and we did that one first! She progressed through the surgery as expected and was transferred ┬áto the PICU for her overnight of sedation. The surgeon was not pleased with my report of how Tav’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 Tav was having such a difficult time at home and the overnight nurse had called out.

Tav’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 Tav 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.

Tav 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 Tav 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 Adrien was still supposed to be under sedation.

I arrived to Adrien 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 Tav, 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 Adrien 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 Adrien 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 ┬ádrug exposure and extended NICU stay. Adrien was having her pain managed by tylenol only as well and we would be transferred as soon as possible back to MEEI with Tav. We saw no one else during the remainder of our stay there, unless I buzzed someone to get pain meds for Adrien. 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.

Adrien 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 Adrien 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 Tav. 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.

Follow

Get every new post delivered to your Inbox.

Join 65 other followers