The tapestry of the life of a medically complex family

Archive for March, 2013

Staring

I cannot stop staring at her hair. It is thick and blonde and perfectly coifed. It is the kind of hair that begins partway forward on the forehead. It is PERFECT today. And I cannot stop staring.

Her mouth is moving – telling me she has breast cancer. She is scheduled for a second opinion & surgery next week. She needs time off from helping my child to address this devastating health issue. I nod. I gulp. I think of her 9 & 11 year olds, her husband.

And I can’t help staring at her hair.

Tally

After another full week without a nurse shift, I feel run down and ‘finished’ but ‘unaccomplished’. As with parenting in general, being a parent of children with complex medical needs is a never-ending “To-Do List” with medical treatments & status assessments tacked on to the page. Sometimes it helps me to glance into the rear-view mirror at the end of a long week so I can truly appreciate that I did get some things done.

This week without nursing I have ensured that 3 complex kiddos have received every dose of their medications & supplements. These doses include: 6 doses each of Xoponex & Duoneb via nebulizer; 6 doses of Nexium; 12 doses of Dulcolax & Singulair;14 doses of Albuterol via nebulizer; 16 doses of Hypertonic Saline via nebulizer; 17 doses of Prevacid; 18 doses of Miralax, iron, multi-vitamins & Vitamin D; 36 doses of Pulmicort via nebulizer; and probably 40 saline nebs since last Thursday… I have done 36 Vest PT treatments of 20 minutes each and listened to lung sounds at least twice daily per kid for the last 6 days (36 times). I have only taken temps on a couple of the days the kids seemed to be “brewing” something- maybe 3-4x per kid so 10-12 times.

I have prepared 3 homemade meals & snacks every day & calculated calories to be sure to make individual daily totals. I have made homemade peanut butter formula each day and calculated individual volumes to be sure each child gets their minimum formula calories, as well as other fluids to meet daily needs. I have set-up a GTube feeding each night, flushing my son’s GTube before & after each start & stop of the feed. I have gotten up to toilet my Tubie 2x per night, every night, as I am sure will continue tonight. Toileting involves: awakening, shutting off & removing the oximeter, shutting off the feed pump, clamping the line, extension & Ferrell bag & flushing the extension, removing the extension, removing mist & attaching an HME to the trach, then FINALLY taking him out of the crib to go toilet. Returning to the crib requires the reversal of the complicated process. Most often my 45lbs son wants to be carried back&forth to the bathroom at the back of the house because he prefers to stay half-asleep during this process. On a rare occasion, my daughter with a trach has also needed to be up for toileting- at least with her there’s no GTube feed.

The overnights this week have not been uneventful. My daughter’s oximeter plug became loose and alarmed when the battery ran low. Her oximeter probe died one night, needing to be changed around 1:30am- of course. 🙂 My son has required supplemental oxygen on 3 of the last 5 nights- hmm, maybe something IS brewing… He has the 3/4L he wears every day, all day, but has required 1-2 Liters per minute on those 3 evenings, including last night. I have changed over the regulator onto full tanks for the 5 tanks we went through this week “living life”.

I have done almost no laundry except the one emergency load of pajamas that was unavoidable. I really hope we can raise the funds we need to move the Washer/Dryer upstairs & fix the electric. It’d be great to gave thrown in a load or two during other days.

I have gone to 3 appointments. I followed up with 3 clinics on medications and changes for 2 of my children per clinic. I have addressed acute issues for 2 of my kids with their GI & pediatrician. I have fought with our DME over their need to deliver the trachs we ordered at the end of February. I have dealt with the fridge repairmen for nearly an hour on the phone- and am faced with another delay.

We have completed homeschooling tasks, played games, made beds every day and had dance parties or done stretches. We have played outside on the deck and adventured out in the car to drive along the coast on a brisk New England Sunday. My kids saw their first lighthouse, Coast Guard station and surfers. I have shoveled a foot of snow off steps & the deck. We visited one of our former nurses and her beautiful new baby.

Whew! No wonder I feel tired! It’s been a full week for 1 Momma, 2 twins with 2 trachs, 1 GTube & 1 5yr old. There is still more to do before the nurse arrives tomorrow morning. On to lunch!

Patrick’s Sunday

PEACE.

Play
Ease
Adventure
Childhood
Experience

PEACE

Our St. Patrick’s Day adventure- on a bitter cold New England day.

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I know how lucky I am

Every day we struggle financially. Each day can be a physical marathon. But everyday I look at my Fearsome 3some and my college-attending teen, I know how lucky I am.

My oldest arrived at a time that may have been “less than ideal”: I was between Grad School Graduation & my first job in a new city- Philadelphia. I signed up to be a control on a “Core Temperature in Depression” study, recruiting non-pregnant females for $75 to swallow a silicone bean & wear a monitor. Imagine my 24-year old surprise! It was a roller-coaster but the answer to my dream of becoming a mother.
My son’s arrival was a flurry of NICU docs, worried nurses & labor-enhancing drugs. He arrived via vacu-assist (appropriate give his surname) and blinked at everyone like: What’s all the fuss? I’m fine. Parenting him was easy & carefree as I look back- but seemed every bit the struggle of every parent as I went through.

When he was 12 years old, my other mothering wish came true: he would have siblings, a brother & a sister, and they would join us in a new home I was able to purchase. His big heart and caring nature were so evident as soon as his brother & sister arrived. When his youngest sister came home, his heart swelled even more. It was amazing to watch & I could not ask for a more clear indication of parenting “success”.

The twins & my youngest may struggle with medical needs, feeding & energy but make up for it in the breadth of their capacity to love, endure & enjoy. They wake each day & immediately check-in with each other. Any separation (like taking my youngest with me to the grocery when a nurse is here with the twins) is predicated with a group hug & concludes with a reunion worthy of a Disney production.
Right now they are sitting at the kitchen table drawing plans for a Leprechaun Trap and sharing their ideas with each other. Yes, there is bickering over who has the box of crayons, which idea is best for the trap, what a Leprechaun will do if they don’t wear green… But most of the interaction is give & take of ideas, punctuated with positive encouragement of “that’s a good idea!”

Medical needs aside, I may be the luckiest mother in America.
(See what 4.5 hours of sleep does for a person?!)

Don’t Look Away

I know you see & want to look away. I know we all struggle. I know asking for help is looked down upon. I also know you rarely get what you don’t ask for.

So I am asking. I am not asking you to sacrifice your children’s college fund, grocery money, bus fare to get to work. I am asking for what you can help with- donate the amount of a cup of coffee ($1 @ McDonald’s, $2.25 @ Starbucks). Would you give up a cup of coffee for them?

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I added to my family through adoption. Yes, the twins had trachs. Yes, they were all preemies. But they were supposed to be trach-free & essentially healthy by the end of preschool. Just as you parents entered parenthood with a set of expectations, I took on the care of my twins, then youngest, as any parent might.

As with all well-laid plans, things failed to go as planned. We celebrated birthday #7 with 2 trachs still in place. My “Christmas present” this year was that doctors were closing in on the diagnosis which would tie together the ongoing complex medical needs of 2 of my 3 younger kids: 1 of 2 life-limiting, degenerative genetic conditions affects them- but not the other child. She will likely continue to grow more and more healthy as she sits beside me watching her sister and brother struggle more and more.
These life events are par-for-the-course. But I need help to make our life more livable as we continue this complex medical journey. Repairing the aged electrical that inadequately meets the needs of my kids’ life supporting medical equipment is imperative & well beyond reach. Moving the washer-dryer upstairs so that it is accessible on the 4-6 days/week when I do the 20+ nebulized medication treatments of the day on my own. These are the things which would CHANGE MY FAMILY’s LIFE. Do you have spare change to change my kids’ lives?
http://www.gofundme.com/complexfamily

7 days of 7 year olds

Another milestone: 7 years old. Sometimes in this life, you forget time keeps marching. Sometimes you feel like you won’t make it through. But then you arrive: 7 amazing years!

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Another Socratic Sunday

“Nature does not hurry, yet everything is accomplished.” – Lao Tzu

OK. Maybe not laundry, or vacuuming…

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