The tapestry of the life of a medically complex family

Archive for the ‘“the Ugly”’ Category

The Day Before, Year 2

This year has been filled with sorrow, joy, health, illness, triumph, failure. It has been a year of growth, of moving homestead & continuing to mourn. It has been a terrific year and a difficult year. And it has been a year that I have thought about you, Shiya and Ayrie each & every day. Sometimes with sadness, sometimes with laughter, sometimes because a picture of your family that is new to me comes across my “news feed”. The twins still say goodnight to him each time they regard the night sky. My youngest still has conversations with him “in my heart”, she says. Know we are thinking of you as you prepare to remember him on his sixth birthday & I get carrots ready to shred for our cake in his memory. Hugs & love & this reminder:

Published a year ago today:

SO many posts are running through my head but the one I need to write TODAY is this one- because tomorrow I can’t say all that needs to be said today.

Today is Tuesday. Today is just another day. Today is the day before the 5th birthday of a child of a wonderful friend of mine. Today should be a day for last minute preparations, baking, decorating, stuffing gift bags… but it’s not. Because my friend’s child had a complex medical condition and he died last fall. He is dead. People can say the ugly words religions use to describe this, but saying “angel”, “heaven”, “whole again”, “in the light”, NONE of these things fill the emptiness in my friend’s arms, the ache in her heart, the agony she is experiencing as tomorrow approaches. Tomorrow she faces another “first” in the list of events after the death of a child- his first birthday on which he will not age, he will not enjoy candles and cake with she and his younger brother, he will not… anything. He no longer exists in the physical realm we experience on Earth. It SUCKS. And I am angry at the Universe that so many of my friends have to,  or will, experience this pain.

I want to remind her that tomorrow is no different- it is not special in its difference from each and every day- every painful day without her son. It is holding her now in a state of terror, fear that tomorrow will bring the collapse she has spent all these months fighting. That does not make tomorrow more special than any day this week, or last week, or last month, or Christmas or any other day. Tomorrow will come, and the searing pain and agony of his loss will be great, but not as great as that first day, that first moment of knowing and not being able to bring him back. I want her to know that she survived the worst on that day, that she has the strength to face and get through tomorrow because she has already survived the worst. She has already committed to continuing, to thriving, to supporting her other son to thrive, as the son who has died would want. She is so strong- although she is feeling as if a drop of water, a shift in the breeze, might be all it takes to break her. She is strong and she doesn’t need to be- because we are here to help hold her when the journey knocks her down.

I want her to know, and to feel, that she is loved and supported and right and just on her trail through the perils of the loss of a child. What I want to do is go to her; to bring cake, to bring candles, to bring wine, and to sit and hold hands and hug and cry and laugh and remember the beacon her child shared with the world for his short 4.5 years. I want to celebrate the gift that was her child. I want her agony to soothe, her memories of joy to once again be strong. I want some of the moments she experiences to be filled with peace.

Please know we love you and will be celebrating the life of our special friend tomorrow.

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Basic Skills

Sadly enough, so many of the nurses sent to interview or train here just don’t have them. The “nurse” scheduled to come tonight cannot assess lung sounds, determine if my kids secretions are copious or dry to the level of needing intervention; and when TOLD to intervene, she stands & waits for direction. There is a level of ineptitude that I have come to expect, but this bungling person has been “trying” to gain a skill for more than a month now.

I know that it’s time to let her go but, in addition to her lack of skilled nursing ability, she has no filter on sharing every minute detail of her life. Because of this, I know her family business has failed, her husband is only working part-time and she relies on the income from my home to keep a roof over their heads. In today’s economy, it is hard to discount the very real role this job could have on a person’s ability to avoid homelessness. This responsibility is far beyond what I signed up for when I accepted nursing support to maintain my kids at home.

Decline

Decline is a word I hate to use to describe any health behavior in my children. It is a terrifying word implying “active change for the worse”. It is the word I am now using to describe my son’s respiratory status- and I want a different word, a different experience. I am DONE with “decline”- I will settle for “plateau”… can anyone give me a “plateau”?

Since last summer, Tavi has gone from being mostly clear, rarely suctioned, rarely secretions thickening in the trach to a kid who needs suction almost daily and does worse with any level of activity- even when cool. He regularly needs saline nebs every 2 hours when off his trach mist color- and sometimes needs them in addition to the mist. He has declined throughout the winter to having more secretions outside the typical activities where I saw them previously. Outdoor temps have not even begun to rise and he fatigues regularly during low intensity Physical Therapy sessions in the cool playroom.

Since September, Tavi has required a saline neb during each PT session. Since early February he has required oxygen- typically 2L every night, but sometimes as much as 4L. For 4yrs 11mos of life with a trach, Tavish required no oxygen on sleeping unless he was actively ill. He has yet to develop an active illness since the oxygen requirement began. As we head to the sleep pulmonologist appointment next week, I fell like I need to get familiar with forming this word in my mouth as part of the description. HOPING it is just a temporary problem. Tav’s sleep study cannot come quickly enough for me.

The Day Before

SO many posts are running through my head but the one I need to write TODAY is this one- because tomorrow I can’t say all that needs to be said today.

Today is Tuesday. Today is just another day. Today is the day before the 5th birthday of a child of a wonderful friend of mine. Today should be a day for last minute preparations, baking, decorating, stuffing gift bags… but it’s not. Because my friend’s child had a complex medical condition and he died last fall. He is dead. People can say the ugly words religions use to describe this, but saying “angel”, “heaven”, “whole again”, “in the light”, NONE of these things fill the emptiness in my friend’s arms, the ache in her heart, the agony she is experiencing as tomorrow approaches. Tomorrow she faces another “first” in the list of events after the death of a child- his first birthday on which he will not age, he will not enjoy candles and cake with she and his younger brother, he will not… anything. He no longer exists in the physical realm we experience on Earth. It SUCKS. And I am angry at the Universe that so many of my friends have to,  or will, experience this pain.

I want to remind her that tomorrow is no different- it is not special in its difference from each and every day- every painful day without her son. It is holding her now in a state of terror, fear that tomorrow will bring the collapse she has spent all these months fighting. That does not make tomorrow more special than any day this week, or last week, or last month, or Christmas or any other day. Tomorrow will come, and the searing pain and agony of his loss will be great, but not as great as that first day, that first moment of knowing and not being able to bring him back. I want her to know that she survived the worst on that day, that she has the strength to face and get through tomorrow because she has already survived the worst. She has already committed to continuing, to thriving, to supporting her other son to thrive, as the son who has died would want. She is so strong- although she is feeling as if a drop of water, a shift in the breeze, might be all it takes to break her. She is strong and she doesn’t need to be- because we are here to help hold her when the journey knocks her down.

I want her to know, and to feel, that she is loved and supported and right and just on her trail through the perils of the loss of a child. What I want to do is go to her; to bring cake, to bring candles, to bring wine, and to sit and hold hands and hug and cry and laugh and remember the beacon her child shared with the world for his short 4.5 years. I want to celebrate the gift that was her child. I want her agony to soothe, her memories of joy to once again be strong. I want some of the moments she experiences to be filled with peace. Please know we love you and will be celebrating the life of our special friend tomorrow.

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 Trachgirl had not been cleared for anything by mouth since she failed her swallow.

Trachboy’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 Trachgirl, 3 days into her post-op “fast”. Trachgirl 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 me not 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. Trachgirl 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.

Trachgirl 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%, Trachgirl 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.

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.