The tapestry of the life of a medically complex family

Archive for June, 2011

A Difficult Truth

I haven’t written all week this past week. I haven’t done a baseline update in SO long. I have taken my kids out and done family memory-making and visited friends… And I now remember why we stopped.

My kids get sick every time we go out. Not just the trached twins but my other preemie as well. We went to the RedSox game (a Wed.) and had Scarlet Fever rash within 24 hours, full coverage on the girls by Sat AM when we went to the doc. Positive strep cultures from sitting at a game enjoying ourselves- in the heat.

This week, we went strawberry picking on Wed. and took the kids to the mall [sat in stroller] & to visit a friend on Friday afternoon/early evening. By late afternoon, Tav was congested, thick secretions. Nurse left at 10:45p after we got home & meds were done. Saturday morning was an emergency trach change morning after a night of suction need and 2 extra overnight saline nebs. Vomiting ensued for Tav throughout the AM and when he fell asleep and needed 4L of oxygen to maintain 93, I knew we needed to re-hydrate via IV if I could hope he would be better. All my “backup” was either out of town or had big plans for ‘fathers day celebrating’, so we headed in all together.

The hospital docs did not want to have us leave after the IV fluids and antibiotics. They wanted to admit Tav and have me leave with the girls. Tav does NOT communicate at all in a hospital [even his pedi has RARELY heard him utter a sound]. Tav tenses his leg muscles to indicate distress- severe distress by the time he is contracting his calves- hospital staff won’t be able to read that. After calf-tensing, Tav will escalate into a breathing compromising tantrum- silent, frantic, secretion-producing… He is NOT a child who can be left alone in a hospital setting. The ER docs set us up on 2 stretchers in a larger ER room and the girls slept on one while I laid awake next to Tav overnight. It has completely wiped me out. They finally let us go home in the AM after repeat labs.

We can’t go out again. We need to return to lock-down lives and remain there until… who knows when. ANY outward adventuring is a significant risk to my children. A difficult reality, but it is our reality. And somehow in “lockdown”, I need to meet new friends to add to the “backup” pool… ongoing challenges of the complex medical life we lead.

A life with meaning

I have more to say about our trip to see the RedSox. I have warned one friend, but not the other, so for my youngest friend I will just use her initial unless her family approves. Not sure how this will come out, but pretty sure I will need tissues…

Over the last year some special children have lost their lives to rare disease. Two of these children I feel bound to beyond having frequent contact with their parents & pictures on social networks- one had frequent medical care with our ENT, the other began her journey with the disease that took her at the hospital where my kids receive most of their medical care- where they are being evaluated for a similar disease.

Ayrie [forever 4] and M [forever 2] came with me to Fenway Park that day. When we surrendered our tickets and stepped through the doorway onto the concrete ramp, I was struck by the coolness and the image of my oldest strolling with my youngest while a nurse carried his other sister whose twin nestled against my neck in my arms. All 4 of my children were there with me, at this historical park, adventuring on a family outing of their shared social heritage. The enormity of what had been overcome, and the journey yet ahead, brought thoughts of my friends who would never again travel on an outing with all their children physically present. Tears sprang to my eyes and I sent thanks to the Universe for my ability to know the significance and experience the joy of this moment.

It hit me then too, that were it not for the lives of these special children, I may have waited beyond this moment, beyond this day, to ever adventure such a venue. The lives of these 2 children have forever impacted my life and the lives of my children. Without knowing of the tremendous lives of these young children, I may still have bought in to the “waiting until they’re stronger”, “waiting until they’re well” mind-set that governs much of what we choose to do as a family. Having known these children faced uncertainty each day and did so with a smile and adventurous spirit has freed me from some of the limitations binding me as a parent of children with significant medical needs.

The life and death of children so young has reinforced that we need to appreciate EACH day with my children. We need to “take risks”- still calculated and unfoolish- but “risk” to live the moments that can stay with them forever. Before I may have thought “well, it’s possible to go to a game, but it will be easier when their trachs are out”. I would have thought the delay nothing more than protecting them from the exposure to germs, exposure to extremes of temperature that are hard on them physically, a delay of access until they were “well enough” to fully participate & enjoy the experience.

Being there that day brought Ayrie & M fully to the front of my mind. It made me acknowledge that the twins, their older brother and younger sister will have memory of the significance of their first RedSox baseball game, experienced together, WHOLE as a family. Regardless of what the future holds for any of my children, this memory will live in their hearts & minds, cementing the bonds of family across experience. Thank you Ayrie & M for touching our lives in this way. I know you both have strengthened and improved our lives through yours.

“Being” a Family: Our 1st RedSox Game

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


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