The tapestry of the life of a medically complex family

Archive for the ‘Medicine’ Category

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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Category:

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

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?!)

Category:

adoption, Family, kids, Medicine, Nursing, Preemie, Special Needs, Trach, Twins

Rare Diseases Affect Us

When you are the parent of a child who is medically complex, you have some “Rare” friends. The first few years of my twins’ lives, we chalked everything up to being born at 27 weeks gestation. My 33-weeker was thought to need the first 3 years or so to progress, develop strength in her muscles and voice box, to “get better”. If you have preemies whose challenges exceed the expected complexity of their birth history/prematurity, after about the age of 3 or 4, doctors begin looking for a unifying diagnosis to explain the “unexpected”- especially if they begin developing “new” challenges.

After the age of 4, it became very obvious that something was continuing to affect the strength & vitality of my children. Overheating in warm temperatures (+/- 70 degrees F) without exertion, having low exercise tolerance and experiencing worsening work of breathing and/or asthma symptoms while it has been treated aggressively for years, resulted in referral to high tech evaluations for possible Inborn Errors of Metabolism.

Tomorrow is World Rare Disease Awareness Day. We will all “Wear Jeans for Rare Genes”. My children’s genetic & metabolic assessments are ongoing & it is believed 2 of 3 may have their own variation of a very rare metabolic disorder- but we’re still not sure which one. The following is a list of disorders for which my children have been screened- it is not exhaustive- and a few diseases are included that affect a few of our close friends. Please learn more about Rare Disease & support research funding for the children, individuals & families affected by Rare Disease.

Mitochondrial Disease is a disease affecting the mitochondria in cells. It is a disease of cell energy- like running on low batteries- which causes progressive decline in many body organs, often resulting in early death.

Lysosome Storage Disease is another progressive Inborn Error of Metabolism. The link is to a video where Alec Baldwin simply explains the disease & how it may affect a child or individual.

A Congenital Disorder of Glycosylation is another disease of cell metabolism which causes decline in multiple organ systems & shortens the lifespan of affected individuals.

There are many, many more Rare Diseases that affect anywhere from a single known case to 5 known cases (2 being my children) to 100s of cases worldwide. Without research funding, these illnesses will continue to ravage the children & individuals in mine & other families. Please care WITH us & Wear Jeans for Rare Genes tomorrow.

Category:

Medicine, Preemie, Special Needs, the Future, Trach, Uncategorized

So Happy It’s Tuesday…

Awakened this morning by a blinding headache at 4am. Stumbled to the kitchen for Advil, water… hoping to stave off the approaching migraine. Feeding pump went off just before 7am (chose the rate based on sleep need…) and I realized I would need more meds when I brought the twins to use the bathroom. The nausea had started. Zofran to the rescue. Lying down for another hour before opening eyelids halfway to begin the nebulizer rotation across the Super 3.

Mid-way through the first neb, through the pillow I have held over my face, I hear a banging on the door. F$&@. SO Happy It’s Tuesday. No nurse and it’s the oxygen delivery guy. Struggle to unlock the door and move the oxygen tubing so he doesn’t crush &/or soil it while he removes the 100lbs tanks. Not quite the vision in my fleece PJs but we always accept these deliveries because they NEVER come back, nor allow for a different day.
While he’s struggling down the stairs with tank #1, the phone starts blaring to add to the throb in my temple. Pressurized tank delivery day as well. I ask if he will also bring the new nebulizer machine we have been waiting for a month to get… he says he’ll call back. Blaring phone AGAIN- to tell me the delivery guys have no order but he’d like to bring it if I can get through to the DME. DME gives me tge run-around, claiming they’ve had an order with no approval since NOVEMBER- ahm, the “order” came from our NP who is the insurance liaison… But sure, I feel like SHITAKEs so I’ll call their approval person- who is the ONE person in this chain that ALWAYS does her job… 2 phone calls later, I am hoping that we will see a nebulizer today to replace the one that died months ago- and the backup that died today.
After my first cup of coffee, and with the “dimmer” feature on my phone, I can type & begin to function. Thanks for sharing the start to a fairly typical day… Can’t wait for tomorrow. 🙂
Gotta go get breakfast into some kids.

Category:

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

The Best of Nursing

Some of our home nurses have been wonderful home nurses. These women & man have worked tirelessly to provide my kids the necessary medical care, caring and developmental support in the best of all possible ways. When my children first came home, they were 2- and then 3- VERY complex, fragile infants. At 15 months old, my twins wore 6mos sized clothing, their trach masks were nearly the size of their heads, and only my daughter could make sounds and crawl.

Nurses came into my home and were trained to change a trach in less than 20 seconds because my children could get no air in without the tube in their neck. They were taught to suction for less than 10 seconds and at a very specific depth, lest they collapse one of my children’s miniature lungs or cause more damage to the trachea. My kids were problem feeders, constant vomiters, attached to multiple pieces of medical equipment all day and these nurse came to work on the front lines of my kids’ medical care to help me keep them home, keep them safe and succeed as a family.
Who were/are the successful ones? The successful ones are nurses who have good, basic clinical skills. They can auscultate lung sounds and differentiate wheezes from crackles from rhonchi from a pleural rub. They know to count heartrate & respirations for a full minute with young children. They know to give a child a minute to cough & clear before heading straight to suction. They can watch a child at play in their fleece outfit and know their respirations are above normal and they’ve begun retracting- before lifting the shirt to count & see.
These nurses also have the ability to LISTEN. They take direction from the parent while following the orders of the doctors. They measure carefully when using a graduated suction catheter. They remember this is “home”, not “hospital”, so they take the time to play, to laugh, to sing, to enjoy. They follow through on exercises, strategies, procedures and activities that help the kids move forward in their development, while continuously monitoring and assessing their health status.
These nurses also have communication skills in the area of bringing information to families. They sometimes come with other experiences or discover a more effective way of doing something. They might have new medical information about a child’s diagnosis or information to share about a medication. They are able to talk with a parent without talking down to a parent. They give information that supports more effective care of the kids, better quality of life.
I have appreciated every minute of support from these nurses. I have worked to be sure they know how much they are valued. My children have thrived under their care & with their support. Many of these people have had to move on with their careers, their lives, but we still think of them often and cherish their support in this complex medical life.

Category:

Medicine, Nurse, Nursing, 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