The tapestry of the life of a medically complex family

Archive for February, 2011

A Saturday in the Complex Medical Needs’ Family Life

As a Mom to 3 preemies, all under the age of 5, I have a lot of medical treatments to do in addition to caring for our home. People ask me how I do it. I have no idea how not to. I am the Mom, the only parent, the grown-up in a sea of small dependent faces. Like every other caring Mom in the world, I do.

Our typical weekend day begins with a “moment of silence”- that’s what I call it when I shut off all the oximeters and the 2 mist compressors that hiss and rumble all night long. We all pause for a moment, sighing relief that we have made it through another night being home together. Then the work begins.

I start Tav’s hypertonic saline neb*, then move to begin Adrien’s. I usually fold the pull-out couch and take off Keva’s oximeter probe so she can get to the bathroom before her first neb of the day. When we come back, I sometimes have had the time to start my pot of coffee and I listen to it brew as I put Keva’s fish mask over her head and begin her pulmicort neb. Usually by this time the twins’ saline nebs are complete and they are ready to move on to pulmicort nebs next. While these 3 nebs run, I remove the tape and oximeter probes from each of the twins. We’ve been up at least 40 minutes by the time we are ready to remove the trach masks, put on HMEs and head to toilet the twins before the kids’ first formula mealtime of the day.

During toileting I make up a cup of peanut butter milk for Tav and almond milk with GI meds for the girls.  When I get them all to the table, I set the Time Timer for Tav so he might finish drinking in a reasonable time to get a sticker on his behavior chart. While they drink I usually clean up dishes from the night before if there was no nurse, or make a new pile of dishes by crafting a grain-free breakfast meal. 99.9% of the time the girls finish drinking first and they wait for Tav to finish drinking. Sometimes the girls eat breakfast right after milk, other times they wait for Tav to be done and for a first round of play to end before eating.

After their morning fluids, I try to let the kids play together for a while before beginning the bathing & dressing routine- if we decide to get out of pajamas! Then I take each twin and do trach care- cleaning carefully around each trach and replacing trach ties, snugly enough to prevent it from coming out and loosely enough not to press the trach hard against their neck. When trach ties are done, I usually listen to lung sounds to get a baseline for the day and then begin Chest Physiotherapy (CPT). I do this one child at a time and a full cycle can take more than 20 minutes per twin, about 10 for Keva when needed. The other kids generally play during this time and it is frequent that they play “medical treatment” on their dolls as their brother or sister is being “worked over”.

By the time we finish with all this, it is nearing mid-day and play time will continue or this will be when we take the time to go outdoors for some fresh air. I will admit that it is infrequent that I get the kids outside on a weekend day. Between inclement weather, additional PRN [as needed] neb treatments, trying to vacuum or get a load of laundry in, our mornings are frequently shot before we even have a chance to think about going outside. This is one area where I want to do much better heading into “spring”. Our lives are so limited by the numerous medical treatments, appointments, weather that is too wet, too cold or too hot [ >70deg F], my kids have an existence that is too much about being in the “nursery playroom” or car. I am committed to trying to make it outdoors each and every day there is weather & a schedule allowing us to do so- wish me luck!

Around 12:30 or 12:45, we have lunch. Lunch is almost exclusively SCD [Specific Carbohydrate Diet/ lactose-free] homemade yogurt unless I feel up to making some grain-free bread for sandwiches. Adrien & Keva love days when I get the bread made and they get to have a peanut butter and honey sandwich instead of the yogurt. Because Tav is so feeding impaired, lunch can last anywhere from 20 minutes to well over 90 minutes if we try to get him to eat the 6oz. cup by himself. Frequently, after 20 minutes, we spoon feed him much like a young infant. Lunch can result in gagging, vomiting, tantrums, crying, clean-up, neb treatments and/or suction sessions before it ends. Sometimes, but not always, we get to finish quickly enough to play or draw/write before it is again time to have peanut butter formula and almond milk. The girls typically do a great job with lunch and finish their milk before doing quiet table top activities while I encourage Tav to finish. It is a rare day when we get more into Tav than the yogurt, and even more rare to get the 4 ounces of peanut butter milk in afterward.

After lunch, Keva really still needs a nap and the twins need to have time on humidity before we continue our day. I tuck Keva in upstairs so she gets her rest until about 4pm. I attach trach masks, turn back on the hissing compressors for the twins & set them up with table-top activities in the nursery playroom. 90 minutes is a long time sitting but they really need the moisture or we spend the rest of the day doing neb treatments nearly hourly for Tavish. At some point, I try to get in another session of CPT for Tavish & Adrien during this time.

If you’ve read this far, you’re now to about 4pm, when we remove the mist and place HMEs for snack time. Tavish again has only peanut butter formula right now but he has begun to ask for a single baby bite of a food item on occasion- true cause for celebration. The girls have more almond milk and a Larabar or some fruit with peanut butter for snack. The SCD is tough with regard to getting carbohydrates into the kids- which they need for quick energy- so we really try to focus on carbs at this time. With the Time Timer again set, the girls typically finish their milk and food and get down to play again. Tavish occasionally finishes his milk “on time” and we try to plan a rotation from free-play activities the kids may do individually to group activities like puzzles, reading stories or games we play all together.  Often this play time is when I get a chance to sit down and look at facebook, draft the nursing schedule or blog- but sometimes these activities wait until after bed for the fearsome 3some!

Whatever the play activities, we work to wrap them up by 6pm to head into the kitchen again for dinner. Sometimes it is cooking that begins, other times we re-heat and begin eating right at 6. I try to keep us on time for getting to brushing teeth by 7pm but often we are at 730 or 8 by the time we are heading back in to begin getting ready for bed. Bedtime includes slathering my kids’ dry skin in aquaphor or other skin creams for what ails them, dressing in clean pajamas, and getting evening neb treatments started. A typical night is another 5 nebs before tucking the “triple threat” into their beds and singing the “Love you Forever” song to each of them.

As they drift off to sleep, I begin cleaning the neb kits to ready them for the next needed neb sometime during the night or the next morning. I check them every 20 minutes to a half hour, listening constantly for a change in breathing or sounds indicating discomfort or difficulty managing secretions. A cough usually needs to be checked out,  wretching needs to be addressed before it becomes a bedding change or aspiration and “stop talking” needs to be said several times. I place oximeter probes on all kids before I settle down to try to watch some intermittent TV or use the computer. I check them throughout the evening in about half hour intervals, being sure the probes are still registering Heart Rates (HR) and Oxygen (O2) levels. I check to see that trachs are secure, trach mist masks are placed appropriately and kids are positioned to minimize occlusion of their trach tubes or obstructive apnea events for my youngest. If any one of the kids has oxygen desaturations, I weave oxygen tubing through furniture legs and behind shelving from the tank to their crib to link it into the mist circuit.

At some point after 11p, I consider heading to bed. I pull out the couch cushions and open the cot. Add pillows, my flashlight, glasses and blanket and I lie down to begin my series of naps between getting up to check my sleeping “airway patients”. Some time between 6 and 8am the next day, I get out of bed to begin the routine all over again.

This post includes none of the work to clean medical equipment between uses, cleaning hands between activities or children, preparing food, feeding dogs or cleaning up- or bathroom breaks! It includes none of the hugs, the chatting, the Mom-child interaction or daily housekeeping. It includes little reference to the average of 5 additional “as needed” neb treatments that take 15-20 minutes to prep and give. When I look at it all in a blog post, I too wonder how it all gets done. Mostly, I just do, and try not to think about it.

* ‘neb’ is short for a nebulizer treatment of any medication or saline to help clear, open up, stop bronchospasms or clear inflammation from the lungs.


Birthday for Ayrie

Today I write to celebrate

A boy whose birth was on this date

5 years ago he joined us here,

Hearts of family blessed with cheer

He grew, he played, he danced with joy,

A happy bubbling little boy

A brother joined not far behind,

Best friend in Ayrie he did find

Adventures, mayhem, running round,

Race up and down the snowbank mound,

Conquest Kings of Mattress Mountain,

Play & splash in water fountain

Brothers bound in hearts and souls,

Climbing trees and digging holes

A timeless bond no hurt can break,

As only brothers true can make

The joyful slideshow plays again

Peace to you our special friend.

The Day Before

SO many posts are running through my head but the one I need to write TODAY is this one- because tomorrow I can’t say all that needs to be said today.

Today is Tuesday. Today is just another day. Today is the day before the 5th birthday of a child of a wonderful friend of mine. Today should be a day for last minute preparations, baking, decorating, stuffing gift bags… but it’s not. Because my friend’s child had a complex medical condition and he died last fall. He is dead. People can say the ugly words religions use to describe this, but saying “angel”, “heaven”, “whole again”, “in the light”, NONE of these things fill the emptiness in my friend’s arms, the ache in her heart, the agony she is experiencing as tomorrow approaches. Tomorrow she faces another “first” in the list of events after the death of a child- his first birthday on which he will not age, he will not enjoy candles and cake with she and his younger brother, he will not… anything. He no longer exists in the physical realm we experience on Earth. It SUCKS. And I am angry at the Universe that so many of my friends have to,  or will, experience this pain.

I want to remind her that tomorrow is no different- it is not special in its difference from each and every day- every painful day without her son. It is holding her now in a state of terror, fear that tomorrow will bring the collapse she has spent all these months fighting. That does not make tomorrow more special than any day this week, or last week, or last month, or Christmas or any other day. Tomorrow will come, and the searing pain and agony of his loss will be great, but not as great as that first day, that first moment of knowing and not being able to bring him back. I want her to know that she survived the worst on that day, that she has the strength to face and get through tomorrow because she has already survived the worst. She has already committed to continuing, to thriving, to supporting her other son to thrive, as the son who has died would want. She is so strong- although she is feeling as if a drop of water, a shift in the breeze, might be all it takes to break her. She is strong and she doesn’t need to be- because we are here to help hold her when the journey knocks her down.

I want her to know, and to feel, that she is loved and supported and right and just on her trail through the perils of the loss of a child. What I want to do is go to her; to bring cake, to bring candles, to bring wine, and to sit and hold hands and hug and cry and laugh and remember the beacon her child shared with the world for his short 4.5 years. I want to celebrate the gift that was her child. I want her agony to soothe, her memories of joy to once again be strong. I want some of the moments she experiences to be filled with peace. Please know we love you and will be celebrating the life of our special friend tomorrow.

Intervention Services and My Twins with Complex Medical Needs

Nearing the twins birthday has me thinking about their next Individualized Education Plan meetings. Throughout life, my children have faced developmental challenges in addition to their medical ones. My children have several diagnoses of developmental significance, including Cerebral Palsy (CP), in addition to their medical ones of “Chronic Lung Disease of Prematurity” and “Gastro-esophogeal Reflux Disease” (GERD). From an early age, right after discharge from the hospital, my children have participated in several therapies to help them to ameliorate these challenges.

Beginning far behind the 8-ball as 27 weekers at 1 pound-12 ounces and 2 pounds-2 ounces, my kids have come a long way to the thriving, speaking, growing preschoolers they are now. When they arrived at MY home at 14 months, Tav still played almost exclusively with his hands and lay on his back unless propped or held in another position. Adrien had yet to walk but was cruising along furniture and sat to play by banging or stacking toys. Shortly after moving in, Adrien began to walk and Tavi began to reach for and grasp toys. The months of Early Intervention in their foster home and its continuation here had begun to pay off.

After their first airway reconstruction surgery, to correct the severe narrowing under their vocal cords, the Early Intervention team expanded to include Speech Therapy and Physical Therapy in addition to Occupational Therapy. These therapists saw my children through many milestones, from becoming independent in sitting to standing to walking to jumping in physical development, from learning to voice sounds to babbling to vocal words in language development. Although my kids made wonderful progress in Early Intervention from birth until the age of 3 years, they continued to need services when they turned 3 to support continued growth and development in these and other skills.

The school district met with me and the Early Intervention team and agreed, in the case of my children, that they would best be served by continuing in-home services to avoid exposure to colds and other illnesses that could be life-threatening to them. Wonderfully enough, the Early Intervention team that had been working with them included members that could contract with the district to continue to provide services for my children. These people, PT, OT & SLP, brought a skilled team to our home to work with my children on moving forward. For the first year both children received OT & Speech services, and the PT came to work on strength, motor planning and muscle control with my son. This past year, my daughter continued with only speech services from the SLP, needing to work primarily on voice quality, rather than vocabulary and language development.

As we hit the mark for their third IEP meeting, I view my children’s progress as reason for celebration. My daughter may no longer qualify for services of any kind, although she continues to have a soft voice and may need more work on breath control when and if she has her trach removed some years off in the future. My son now walks, runs, draws simple people, uses scissors to snip paper and speaks in complete sentences when he is calm and comfortable with the person he’s talking to. He still struggles with strength and endurance (common across all 3 of my younger children), grasping crayons and using enough force to make clear marks on paper, eating textures or solid food and communicating clearly.

Both children continue to have health needs that limit their access to participating in groups of children, so neither will be enrolled in a preschool class. It is wonderful to have 3 preschoolers in the same home so we can do group activities and they can learn the give-and-take of sharing and playing with others. During the upcoming IEP meetings, I will work with the team to design an educational plan which will help both of my 5 year olds to continue to grow and flourish. Will it be one plan? Will there be two? That’s the great thing about working together with a team; different opinions and impressions will be considered and we will hopefully agree to the plans necessary to help my children continue to move forward in their development.

Fancy Friday

Family is about sharing traditions. Parents bring traditions with them from their childhood home, like Christmas stockings, when Santa arrives & the way birthdays are celebrated. As families change, become larger, spend more time in their own nucleus, traditions uniquely their own develop from day-to-day activities or new needs of their nuclear family members.

When I was a parent “the first time”, traditions included Christmas stockings, an empty tree base until Santa came overnight, celebrations of Hanukkah & Shabbat – singing Hebrew blessings at candle light and enjoying dinner & playtime with only these candles to brighten our winter evenings. Saturday morning breakfast out at a local diner- even as we moved across the country and back- and batting cages, Little League, Cub Scouts… riding bikes together. Sometimes we read Harry Potter in the evenings, sitting together on the couch and taking turns reading the paragraphs or pages to each other. My oldest and I share a love of literature and adventure stories which includes sharing books back and forth over MANY of the last 12 years he has been a reader.

When the twins arrived, with oxygen tanks and open airways to their lungs, traditions changed to more home-based activities- with fewer open flames! We have the occasional Shabbat inspired dinner, but with nursing on Friday and so many feeding issues, well, one could see how that might no longer apply as a time to celebrate. We have changed family traditions as the grouping of people changes, or as we get interesting hand-me-downs!

Even before use of their upper airway for sound, our house has followed the score of what I call “My Life as a Musical”. We have wake-up songs I sing to the kids, songs for washing hands, name songs unique to each kid in the house, songs we sing to comfort or rev up, the complete score of the “Wizard of Oz” musical my sister was in as a child, selections from other musicals. My favorites are our bedtime songs including “It’s the most wonderful time of the day” and the “Love you Forever” song I sing each and every night to each kid individually- right before they sing it back to me. Without our good night musical transitions, my kids are restless, sometimes agitated, and may stay awake hours trying to settle in. Even when I go to the hospital for an overnight with one, I have to call home and, regardless of audience (e.g., docs, nurses), sing to the other(s) who are readying for bed there.

All scheduled nebs are done together as a group, twins in cribs, youngest sitting upright across from them. I dress the twins in similar colors, and include Youngest in the grouping with either a similar “style” (e.g., her signature green Hanna dress when they wear blue & yellow), or in a similar color pallet when we go out. It’s a trick used by other families to keep track of their kids in public places, I think it emphasizes the twins identity as such, without making them look completely the same, and differentiates my youngest as “belonging” but not being one of the “twin unit”- altho, believe me, “are they triplets?” is as popular as the ever inappropriate “where did they come from/ you get them?”. Anyway, sometimes similar colors come from my choosing the outfits in the same mood, just like when you go to your own closet!

The more unusual of our traditions is the one we celebrate many Fridays. A couple years ago, the kids got “Hand-me-down” clothing from their biological older sisters and cousins. Their biological family are “dress up for church” people and the girls inherited these GORGEOUS tulle and velvet or embroidered dresses that are MUCH too fancy for anything we could ever dream of doing as a family in our quest to avoid germ exposure and stay healthy! SO, in order to give my girls access to these beautiful dresses and use the hand-me-downs so lovingly cared for before we got them, we began using Friday as a “reason” to dress up.

We call these days “Fancy Friday” and the girls wear extravagant-looking dresses with tights while Trachboy dons dressier button-downs and sometimes white pants. We go through our day as we would otherwise- heading to doc appts., running errands, riding bikes along the Riverwalk, playing on the deck or slide, or staying in and hunkering down if there’s not reason to go out and the weather is not agreeable to outdoor play. It is one of the more unique traditions that gets lots of comments and raised eyebrows- pink tulle tiers below a black velvet bodice are a bit dressy for an airway appt… The kids love it. It’s quirky and something that defines our family unit as uniquely US. What are traditions unique to your family?