Environmental Challenges | Basekamp Laundry Mountain

The tapestry of the life of a medically complex family

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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!

Category:

"the Ugly", Environmental Challenges, kids, Medicine, Preemie, Special Needs, Trach, Twins

STOP SAYING THAT!!!!

STOP!!! Just STOP!

Before you tell a mother of 3 preemies, 2 with trachs, 1of those with a GTube; 2 of 3 who have a degenerative, life-limiting condition. And you’re living as a single parent in a house which is failing your kids. And you haven’t slept more than 3hrs in a row in 200+ days. And those 3 hours are only ever complemented by 1 more on any night of a week- 4 hours being a GOOD night. And you’re homeschooling your kids because they get hospitalization sick on every peer group exposure. And they’re on a special diet that costs $10/day just for “Milk”. And 2 are on medication that needs refrigeration & costs over $7000/month… And YOUR fridge failed & spoiled that med for both & milk & the $11 roast that should have been 3 nights dinner NOT the dog’s dream come true- the evening AFTER your latest weekly grocery trip. And you have spent 2 hours on hold, and 2 separate days waiting on repairmen who apparently ordered the WRONG PART!

STOP saying “I understand”

because, thankfully, not many parents ever will. And THAT is something we can truly mutually understand. I am just as happy for you NOT to understand, as I am to have the continued struggles that mean ALL 3 of my children are still here with me.

Thanks for NOT understanding and not implying that you do.

Category:

"the Ugly", Environmental Challenges, Medicine, Special Needs, Trach

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?

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

Category:

Environmental Challenges, Preemie, Special Needs, Trach

“Lockdown”

As parents, we all do our best to protect our children. We use outlet covers, remove knobs from gas stoves and install carseats so tight paper cannot slip beneath the base. This morning my 5-year-old bumped her head trying to surprise me by re-making her bed because I told her we were going to do that this morning. With all we do, we can't keep them safe from every bump or bruise- fortunately Momma's magical kiss was all that was needed to heal this one.

Being Mom to nearly 7-year-old twins with trachs, and a medically complex 5.5 year old, there are things worse to worry about than a bruise on the forehead or a scrape on the knee. A simple cold in another child their age could be an illness severe enough to put them all on oxygen, develop into a severe pneumonia, place us inpatient across 2 rooms at our children’s hospital. Our last inpatient stay was Christmas Eve 2011, as my youngest began requiring oxygen at home to keep her oxygen saturation within the acceptable range.

The way we avoid the hospital is to work to avoid contact with people who may become ill and share that illness with us. From September through May every year, we live in “Lockdown”. It is the primary reason I homeschool. It is why the OT & PT see my kids first, and cancel when they are exposed to known Flu or RSV or if they are coming down with something or “feel a tickle” in their throat.

I realized in describing it to our neurologist that people don’t understand the lengths we go to as a family to avoid illness. They see kids who appear medically frail but who have infrequent hospitalizations, who maintain health throughout much of winter. They see them cone to clinic wearing masks, in their strollers, with a Mom who requests exam rooms be wiped down in her presence. They have no idea that this is the tip of the iceberg.

My twins with trachs turn 7 on Saturday and have been to the grocery store less than 7 times. They stay home with a nurse or I shop online to avoid exposing them to a grocery cart. My youngest sits in the cart still, but only after I wash every surface she might touch with wipes rated to “kill the flu virus”. We have not been to a gymnastics class since my twins’ first summer home- the summer we spent 2 weekends of every 4 inpatient.

With family parties in winter, we canvas family members the week prior to see how everyone is feeling. We cancel if anyone sick is planning to go- and almost NEVER attend an “in-law” inclusive party- even in spring. We celebrate our own holidays and birthdays with small gatherings at home- including one set of cousins who are well one week, making time when the others are well to celebrate again.

Vigilant? Yes. Extreme? No. My children have a history of adjoining rooms in more than one hospital in year’s past. Being inpatient 10 days after Thanksgiving, 8 days after Christmas, the week after a visit from the birth family aunts an uncles- a hard lesson has been learned and etched in our experience. “Lockdown” is the way we ensure we can be together as a family, home & safe from the illnesses contracted as a result of an inpatient stay. My kids continue to experience a rich life of playing in snow, riding bikes and building blanket forts. They just do it ‘different’, not ‘less’.

Category:

Environmental Challenges, Family, kids, Preemie, Special Needs, Trach, Twins

Meltdowns Come in All Sizes

Yesterday I taught my kids that meltdowns come in all sizes. To admit to financial stress would not do justice to the near impossibility it is to cover winter bills in our household. Last month’s $500.00 heating bill (yes, to keep our home a balmy 62degrees), coupled with a near $200./month increase in mortgage payment to cover some increase in taxes for the house… This month is our most lean in a long while & my attempt to complete a school consult to earn money to cover things was thwarted by the Nemo Snowpocalypse. Financial stress is near its all-time high- likely a common thread among readers. (Virtual hugs to you.)

In addition to this, February has a school vacation week which takes the minimal nursing coverage that I do have, COMPLETELY out of the picture. She graciously came Monday so that I could interview another nurse (a tragedy for another post) and stock up on food to get us through to when she returns next Monday. (121 hours, but who’s counting??) Although the grocery store didn’t have enough of the specific almond milk my children can tolerate, we have enough for several days and may be able to stretch it to Monday if we ration & drink water at snack & dinner. That will be our plan.

During Snowpocalypse ’13, we had some challenges with the heating system- thank you Trane furnace for your auto-shutoff that prevents Carbon Monoxide poisoning of my family. It DOES take quite a long time to heat up a house after the heat’s been off 12hrs. -but we’re all still here! Snow removal was a 2-full day project JUST to get the cars shoveled out from the front of the driveway and the kitchen roof cleared enough to maintain its integrity. And, for all the work of clearing the driveway, it is good I spent enough time out there to locate the gas leak in the pipe that supplies gas to our home for heat & hot water. NStar took my notification seriously & immediately- then forwarded my info to National Grid (our gas co. I had called the wrong guys). National Grid was out within the hour and had the leak repaired by morning. Fortunately, the leak was OUTSIDE my home and we rarely open windows in my kids’ playroom/bedroom/medroom so it never leaked in through their window above the pipe.

Oh, riiight, meltdowns. Have you kept with me? Good. Yesterday started like every other day: one twin using their oximeter as an alarm to awaken me at O-Dark-Thirty. Nebs & nebs & nebs… And the OT is apparently in town this vacation week so we saw her before breakfast… When she left, I opened the fridge to get milk & smelled the melting plastic. I saw the melted wrapper of the roast I had gotten on clearance to cover most of our dinners for the week. I saw the temperature control panel hanging from its wires from above the HOTTEST pair of fridge lights I have ever seen. When I tried using the door switches to shut them off, nothing happened; they beamed on. The door switches did not turn on the fan to begin the cooling/refrigeration process. I looked at the stores of food I had purchased for the week being exposed to all that heat. I looked at the $20,000.00 dollars worth of meds baking in the cold cuts drawer… And I lost it.

I screeched the lament of my forebears and cried and made milk/formula for the kids through the sobbing. I pit cups on the table and ran to the basement to re-set the circuits to see if that would help- and came back to the carnage to see it wage on. I put on potholders and got one bulb out before pulling the power source to the light fixture- all the while crying & sobbing & spewing my verbal stress about how replacing the fridge – even paying for a repair- is too far beyond our family reach right now.

I grabbed things that would go bad and fed them to my children. I found a cooler and threw in some snow & added the yogurt & bacon. I put the almond milk in the snowbank still standing on the back deck… Then I threw our roast in the oven to cook it up for the family dog- man will he love us for the next few days.

It may have only been 5 minutes time, but I have never felt more out of control, over-whelmed, beyond-the-pale stressed in the entire time I have had my kids home. Sure, its not just money & the dog’s roast. There is the birthday of the child, forever 4, who would have turned 7 just 2 weeks before my twins. There’s the lack of any help for the 100+ hours of medical treatments & assessment my kids will need this week. There’s the GI appt. on Thursday for all 3 kids where I defend the alternative formula versus chemical slop that is preferred by GIs at Harvard, where I defend my youngest as she works hard to stay dry but just cannot physically be continent, where I justify eating healthy but different to keep my kids from vomiting daily & developing the painful black patches across their skin… Then there’s the neurology appointments afterward where I need to ask about the new metabolic results, the question of cerebral atrophy that doc has raised from seeing the old MRI, the stroke-like episodes I sometimes see with my 5year old…

So I guess a 5 minute meltdown isn’t the worst-case scenario given this week, this month, this life… And we sure got lots of cuddle time during the 3 hour bedtime power outage that ended our day – who knew no power to run all the overnight equipment would be a blessing- but for yesterday, it was as close as we could get. Peace to you & yours.

Category:

"the Ugly", Environmental Challenges, Medicine, Preemie, Special Needs, Trach