The tapestry of the life of a medically complex family

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!

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