The tapestry of the life of a medically complex family

Archive for the ‘“the Ugly”’ Category

Of Buckets and Why

My kids’ genetic material is being sequenced to try to determine which type of metabolic disease they carry that may ravage their body and take them before they experience their 40s… or 30s… or 20s. One 7 year old and my 5.5 year old are affected in some way, the SAME way, a RARE way, as 1 other child at our local children’s hospital and 2 known adults “AT the NIH”- not a location for the healthy.

If we choose “best case scenario”, 7 is just under the 1/3 mark of a lifetime with one of these diseases. And if it’s not…

I bought them roller skates. They’re uncoordinated; they have low stamina/exercise tolerance. And a close relative asked “Why would you buy them roller skates?” They are likely to develop seizures and regress cognitively & physically. But they don’t have them yet.

When she asked “why”, I realized again how little others understand of this life. They watch. They try to support. They have absolutely no clue whatever.

I see my 7 year old and think: if he understood, what would he want to do while still able? What “fun” would he want, should he want? If he knew what he could wish for before it’s beyond his capacity to wish, to accomplish?

When I was a kid, my Dad was in the Army reserves. 2 weeks every summer he went to a base for “active duty” & always brought back something for each of us. One summer that ‘something’ was roller skates. I still remember the feel, the fun, the risk of life & limb at the top of our treacherous driveway…

That experience is something I want for him. Sure, roller skating will be work for him, and for her. But practice will bring success and success will bring fun. And “FUN” is the bucket list of childhood.

Why? FUN

Category:

"the Ugly", Family, Judgement, kids, Medicine, Memories, Preemie, Special Needs, the Future, Trach, Twins

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

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

5 Years on a Pull-Out

You know that uncomfortable couch in your friend’s basement? The one you sleep on when you come into town to see the game? … a show? … attend a reunion?? The mattress sags. The bar hits you uncomfortably in your lower back. The springs make noise as you try to move to another uncomfortable position? That bed has been slept on 47 times in its 10 year life and is like draping a sheet across a jungle gym for all the comfort it provides.

Imagine that bed is your bed. Imagine your friend re-locates it to your master bedroom and adds 2 large compressors to generate noise in your room while you try to sleep. Add to that a pile of metal pipes to simulate the reverb of the home medical cribs in which my kids sleep….

Aaaaahhhh. Makes you just want to stretch out and get uncomfortable, doesn’t it?

Welcome to my everyday. Yes, I have had the privilege of some overnight nursing over the last nearly 6 years- but none since September and rarely 3 nights per week when it did occur. Nearly every night for 5 years I have re-arranged the playroom furniture and pulled out the spring & pipe frame of my imminent demise. My ample 5’9″ frame is notso gentle on the equipment designed for the occasional overnight guest (whom you don’t wish to be so comfortable they become a roommate). Lately it has become a literal pain in my neck & lower back.

I need to do something, to change something. Medical care for my twins (& youngest) will be an ongoing thing for the foreseen future. Nursing coverage is not coming along. Funding for an upstairs sink/bathroom is not on the horizon. Moving the kids and equipment and supplies upstairs to the vacant bedrooms seem untenable. The problem with how to accommodate a nurse or staff upstairs if everything WERE moved is another concern…

Today’s thought is the possibility of putting one of the loft beds downstairs for me- yes, me, 40+ years old and sleeping in a twin bed 4 feet in the air- but at LEAST it would be a BED, a MATTRESS. With the number of errands & appointments & lack of nurse hours, this plan will have plenty of time to ruminate. Welcome to the environmental challenges of our complex medical life.

Category:

"the Ugly", Environmental Challenges, Family, kids, Preemie, Special Needs, Trach

10 Things about Home Nursing

… That I wish could be learned by reading a list & not having to endure it.

10. Home nursing often attracts the dregs of the profession. Families count narcotics, ADHD meds, pain pills- consider a lock box to which you have the only key.

9. Home nurses may misplace, damage or ruin things in your house and never admit to having done so.

8. Home nurses are NEVER on time and rarely go a month without missing a shift.

7. Home nurses can rarely identify a trach or GTube from an array of medical equipment and plumbing supplies.

6. Home nurses bad mouth families as often, if not more than, families express disdain for their performance.

5. Home nurses rarely have the assessment skills to determine when medical follow-up is needed.

4. Home nurses rarely have any skill which they can “instruct the parent” to support the parent’s ability to better maintain their child at home.

3. Home nurses rarely LISTEN and COMPLY with medically sound advice or procedures which have proven successful for a child in the past, if this information is shared by a parent.

2. On a rare occasion, your family may truly be blessed with a professional nurse who is a shining beacon of skill, caring and support to a family with a child with complex medical needs.

1. If you find your beacon, HOLD ON TIGHT: support them, be flexible, make tea, make coffee, celebrate birthdays, celebrate Tuesdays, bake cookies… Keep looking & sorting through the rest until you find them.

Category:

"the Ugly", Medicine, Nursing, Preemie, Special Needs, Trach, Twins

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