The evaporative cooling vests turned out to be amazing. “Activated” with some cool water, they kept Tav & Adrien cool enough to ride their balance bikes on the bike path for 20 minutes before resting- in 85 degree F heat. SO happy we have a tool to help with this. The fearsome 3some had a GREAT time.
Some days in our family are completely caught up in the managing of medical care & health-related events. On June 1 2011, we changed the focus completely and journeyed out to enjoy a long-standing family tradition. For generations our family have followed the RedSox and finally the Fearsome Threesome was able to take in their first game at Fenway!
Before the game, we achieved parking magic thanks to some connections with the local police. As we entered the park, I became nostalgic, breathing deeply in the atmosphere of this monumental event for my family. I paused a moment, adjusting the suction bag, oxygen tank and preschooler, and took a second to remember the children who I brought with us in spirit. Being in this place brought them close to me again, renewed my resolve to enjoy whatever part of this event that we were able to attend, and brought tears near the surface at the enormity of this moment.
I am so very thankful my children were well enough to make the trip. I am thankful we had a nurse who could come with us and help out with monitoring the twins’ reaction to the heat. I am thankful to have experienced the RedSox game with all 4 of my children. Sitting there, looking over at the four of them living this experience, I realized that, regardless of future events, they will ALWAYS have this moment together- I will always have this moment. The RedSox were not able to overcome their opponent during this outing, but WE, family of 5 including 2 micro-preemies with trachs and a newly minted adult, overcame some truly remarkable opponents and lived this experience together.
Our family's first RedSox game at Fenway Park
It’s a memory long gone, distant, nearly a “wives’ tale” in my history. Each day, multiple times, I run small compressors that nebulize medications into particles small enough to inhale. All night long I listen to the hiss and rumble of compressors as they neb water into mist to moisturize the air my twins breathe through their trachs. Alarms sound when heart rates plummet or rise and when oxygen saturation levels drop below a minimum acceptable level….
Throughout the day, when the heat is not running and I am standing far from the fridge, I remember the sounds of the world without motors running in the background. It is those times I hear clearly the laughter, the songs, the joy. The times my children add their voice to the cacophony, it endears all those other sounds to me; the harsh tones which allow my children to breathe & craft their own noise.
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.
Today’s social media allow us the ability to connect with people with similar likes/dislikes, lifestyles or, in the case of my family, parents who have children with similar medical challenges as mine. This network I have written about previously in my post about Community but it has never been more essential or active as it has become after the earthquake and tsunami hit Japan recently. Displaced families across Japan are struggling to find shelter, electricity, food and medical care for their everyday needs. Families with children with complex medical needs are more frantic in their need for these basic essentials.
After the quake & tsunami struck, families reached out to each other through social networks and online media. Once family member status had been determined, families of children with complex medical needs reached out to their online community of support to help them in their advocacy for the health and safety of their child. When even the basic needs of food, water and electricity are hard to secure, their only choice would be to relocate their family to another region of the world- no small task with a child who often requires direct medical intervention throughout the day and mechanical medical intervention overnight.
Two of these families have reached out to our community and we, family members logging into Facebook at home, on the road, or from the hospital, took up the charge to advocate for these families from our position of safe homes the world over. We answered the call by writing to or contacting local hospitals, media outlets, senators, top government officials and government agencies in charge of allocating resources in areas of crisis the world over. We families, armed with coffee mugs and keyboards, have made a difference in the lives of one Canadian family from Japan who has since relocated to their former home in Toronto. We continue our efforts for another US family still stranded in Japan, concerned for the future of their 14 month old child. Families of children with special medical needs are uniting together to save the world in our pajamas!
5 years ago March 2nd my twins entered the world of the living- one at delivery, the other post-resuscitation. Their early life was marked with intubations, shift changes, blood draws, substance withdrawal assessments. They struggled and fought through pain, breathing difficulty and a lack of a single parental resource. The first year was spent healing and sickening, healing and sickening. Operations for trach placements and a gastrostomy tube placement after multiple replacements of their nGs. Their strength was tested at every turn, one step forward, three steps back. 6 weeks in the hospital is how my son spent his first Thanksgiving and Christmas. Thank goodness for a wonderful foster family and caring nursing staff.
5 years later, some of the struggle remains, but life has improved to more living, less medicine. My children continue to require tracheostomy tubes, but celebrated their first birthday ever without one of them having any type of G-tube. They both enjoyed grain-free pizza & cake with their younger sister and Nana I & a couple cousins.
A family has been made for them; 4 full birthdays of family. I am reminded how much I love them and how far we have come, each and every day. The last year, ages 4 through 5, has included regular doctor visits but no in-patient hospital stays. It is their record-year for health status that has been possible to maintain at home. Weight has been gained, height has been gained, vomiting has been reduced to “rare” status.
Bikes & helmets & games & singing & dancing & running & playing – EVERY day. I have no word but ‘miracle’ to describe their status in life today- a miracle of the universe. Even as struggles remain and challenges are left to face- life is good nay, great.
I am hoping the wonder of 5 will add to the celebration! Happy birthday, Adrien & Tavish!
Basekamp Laundry Mountain 