Category Archives: Medicine

Community: to come to unity by shared experience

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Community is a word with many definitions across similar relationships. In the past, and in today’s dictionary ( http://dictionary.reference.com/browse/community ), the list always begins with definitions which include a common location or a common religious belief system. Late in the list, about definition 8 of 9, is the description that I think will one day head the list:

8. similar character; agreement; identity: community of interests.

My community has little to do with where the building in which I live is located. I know how some of my community members express their beliefs religiously or universally, but it is not common across each of us. I find community in families and individuals who share my life experiences, views on humanity, and commonality of challenges with which we are faced each day. My community is the group of families & individuals throughout the world that face the challenges of caring for an individual with special medical and/or developmental needs. Each day we face includes supporting each other through the ups and downs of the health status of the child or other family member, the variability of ability we see relative to this roller coaster, and our own fatigue from supporting and caretaking. We spend life walking in the shadows of major medical centers, avoiding the situations we know can put our family member in jeopardy, celebrating today’s health while preparing for the next hurdle- like a track meet, there are always hurdles.

My community is one that is powerful in its strength to support each other. They are present to provide information to those beginning the journey. They listen when things are challenging to another member of the community. They commiserate when someone has a bad day, recommend strategies to make the next day better, share virtual hugs and imaginary chocolate- using the language of the community of old to describe their wish to support each other. They hear and respond.

My community is one that frequently suffers great loss together. When a child or family member becomes sick, struggling to continue, nearing the end of this journey on earth, my community rallies. Words of encouragement are posted on social networking sites, medical condition boards, virtual and postal cards are sent. There is no hour that goes by that we don’t reach out to each other, letting everyone know, asking everyone to pray or connect with the energy of the universe in the way that makes sense to their beliefs. Our community is inhabited by a great number of angels, of spirits beyond, of people who we have loved who have journeyed to the light. We grieve each loss together, provide the support we are able, and celebrate the life of the person with worldwide balloon releases, bubble-blowing, changing of  “profile pictures”, words of encouragement for those who remain.

I believe we are truly living in a time where the definition of community as co-location & shared beliefs is nearing obsolescence.  My community is limited by no political border, no race, no color nor creed. My community is more open, more inclusive, more “come unity” that I have chosen. It is the coming to unity of experiences that sustains us as members of a community for each other.

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LTR- with Rib Graft Poem Foolery

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When your subglottis is narrowed

and various trachea parts are bowed,

a reconstruction’s what you need

an ENT can do the deed.

He first will harvest one mid-rib

And cartilage he’ll have for gib

He’ll graft the narrows, do his best

and then you’ll need some mighty rest.

A day sedated, maybe two,

Until the nurse awakens you.

The stent he placed will take a ride

and in your trachea reside-

for a week or weeks, it will depend,

you’ll hunker down until the end.

Bronchoscopy for its removal

Repeat in a week to assess the upheaval.

The goal is air will better flow

just as it is supposed to go…

Perhaps dilation will be next

until you pass his airway test.

Then with healing finally comes

your voice escaping cross your gums!

Celebration, joy, elation!

Worthy all that consternation.

LTR with rib graft cures

some SGS in trach of yours!

Thankful 2010

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As we cruise through the first week of November and the challenges and concerns about health for the trifecta and the round-out of the fantastic foursome… I want to take a moment to celebrate the things for which I am MOST thankful.

I have 4 beautiful kids who, regardless of their medical needs and challenges, I love for the sunshine and joy they bring to me. My eldest has struggled with being too young to manage the stress of a first year of college at this time in his life. Thankfully he had the strength to talk about it and eventually withdraw before increasing debt without passing coursework became the outcome. He is a child who lets me know that I can succeed in parenting. He frequently shows the compassionate and nurturing side he has developed over the years when he sits with his young siblings and talks with them about their interests or gives them “pony back rides” in the playroom. I achieved “random hug” status last week by completing the simple task of remembering his Lucky Charms when I went to the grocery store. These tender moments remind me that his wonderful self is still in there, surfacing and diving as he figures out how to navigate his transition to adulthood.

With the twins, I am thankful for their continued resilience, for their seeming increased ability to ward off illness. We have had multiple doctor visits in the local children’s hospital and have been able to avoid contracting the usual “inpatient” events of years past. With my daughter, she has developed a bond with her little sister that involves daily interactive play and nurturing encouragement. She is more likely to be cautious around her trach and has developed MANY pre-reading and early math strengths over the last year. My son is gaining weight (finally!) and his physical and language/communication abilities have improved significantly. He regularly tells his sisters, brother and I that he loves us, participates much more in group play and has begun to be able to mediate his environment better using language over physical means <– oops! SPED speak for less hitting & grabbing, more asking/telling!

My youngest continues to have her physical and medical challenges of unknown diagnoses but she lives her life with sunshine and much humor. Her personality has really grown SO much this year- she is regularly saying goofy/funny things and bobbing her head back and forth like the comedian she is! She has been mostly healthy this year as well and we have testing scheduled soon which will hopefully answer a few of the ongoing nagging questions.

I am thankful for my own health and strength to do all that I do- I DO wish I could do it all a little more calmly at times, but glad I still get it done. I am SO thankful for the healthy and skilled team of nurses we have had over the last year: Alicia, Bass, Diane, Meghan & Sue are resources which have kept my kids on the path of good health without an inpatient stay in 2010 thus far. (Do NOT tell the fates…) The skilled and caring team of doctors that support our efforts also cannot be over-appreciated. I have been blessed SO much by their thorough and thoughtful treatment of ongoing challenges, and quick response to emerging issues so they do not progress to major complications. Our doctors are the best!

It has been another long year but I am thankful for all the blessings that have come along! HUGS to you & yours!

Reconstruction with Rib Graft, Part 4

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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 Trachboy 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 Trachgirl’s crib so they could snuggle together or play with small toys. Fortunately we got through the next few days without incident. Trachgirl’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, Trachboy went in the car with a nurse and Nana while Trachgirl & 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 Trachboy’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.

Trachgirl 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 Trachgirl 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

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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

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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.

Confession

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Here I am on my “uber private” blog (LOL) preparing to make a SHOCKING confession:

I LOVE MY PEDIATRICIAN!  Not some respectful professional feeling- LOVE.

Okay. He’s not “mine”, he’s my kids’. And, no, this is no confession of a tawdry affair. I love him in a way that is no threat to his wonderful wife and children… I love him as the single other person on the planet who is involved in caring about my children’s health and well-being on a regular and very involved basis.

I love him. Not creepy, not [too] inappropriate, not in a “lustful” [EWW] way… a bit Oedipal really- but without the drama of the original story.

This man is a man who LISTENS when I talk about my kids, who shows definite concern for their well-being, who strategizes possible medical or other interventions, who calms my fears when they are high, who shares his level-headed view from “outside” the situation while being linked to the kids who are navigating it. He returns my phone calls directly when I have new info. to share or concerns to follow up on. He is smart, well-researched and seasoned enough to know that it is a good idea to let the latest “trend” be tried for a while before adding this or that testing to his patients’ lives. He admits he is not infallible. He has a similar parenting style and told my eldest: “If you were my kid, I would have you write an essay on why vegetables are necessary.” when my son told him he didn’t eat them because they had little nutritional value. He shares my sense of humor, warns me of pitfalls he has experienced himself with an anecdote from parenting his girls. You can see the love he has for his family whenever he talks about them- pictures of them adorn his offices and his waiting area is filled with his proud display of pictures taken by his oldest daughter while they were on safari.

He is very engaged when we come for a visit. Smiling when talking with my kids, amazed at their progress or developmental feats- on whatever their timeline. He KNOWS them. He really knows them and cares about them & their futures. THIS is why I love him – and NO you cannot have his name!