The tapestry of the life of a medically complex family

Archive for the ‘Trach’ Category

Saving the world in your pajamas

Today’s social media allow us the ability to connect with people with similar likes/dislikes, lifestyles or, in the case of my family, parents who have children with similar medical challenges as mine. This network I have written about previously in my post about Community but it has never been more essential or active as it has become after the earthquake and tsunami hit Japan recently. Displaced families across Japan are struggling to find shelter, electricity, food and medical care for their everyday needs. Families with children with complex medical needs are more frantic in their need for these basic essentials.

After the quake & tsunami struck, families reached out to each other through social networks and online media. Once family member status had been determined, families of children with complex  medical needs reached out to their online community of support to help them in their advocacy for the health and safety of their child. When even the basic needs of food, water and electricity are hard to secure, their only choice would be to relocate their family to another region of the world- no small task with a child who often requires direct medical intervention throughout the day and mechanical medical intervention overnight.

Two of these families have reached out to our community and we, family members logging into Facebook at home, on the road, or from the hospital, took up the charge to advocate for these families from our position of safe homes the world over. We answered the call by writing to or contacting local hospitals, media outlets, senators, top government officials and government agencies in charge of allocating resources in areas of crisis the world over. We families, armed with coffee mugs and keyboards, have made a difference in the lives of one Canadian family from Japan who has since relocated to their former home in Toronto. We continue our efforts for another US family still stranded in Japan, concerned for the future of their 14 month old child. Families of children with special medical needs are uniting together to save the world in our pajamas!

Category:

Community, Medicine, Special Needs, Trach

Twin Time, 3-2-2011

5 years ago March 2nd my twins entered the world of the living- one at delivery, the other post-resuscitation. Their early life was marked with intubations, shift changes, blood draws, substance withdrawal assessments. They struggled and fought through pain, breathing difficulty and a lack of a single parental resource. The first year was spent healing and sickening, healing and sickening. Operations for trach placements and a gastrostomy tube placement after multiple replacements of their nGs. Their strength was tested at every turn, one step forward, three steps back. 6 weeks in the hospital is how my son spent his first Thanksgiving and Christmas. Thank goodness for a wonderful foster family and caring nursing staff.

5 years later, some of the struggle remains, but life has improved to more living, less medicine. My children continue to require tracheostomy tubes, but celebrated their first birthday ever without one of them having any type of G-tube. They both enjoyed grain-free pizza & cake with their younger sister and Nana I & a couple cousins.

A family has been made for them; 4 full birthdays of family. I am reminded how much I love them and how far we have come, each and every day. The last year, ages 4 through 5, has included regular doctor visits but no in-patient hospital stays. It is their record-year for health status that has been possible to maintain at home. Weight has been gained, height has been gained, vomiting has been reduced to “rare” status.

Bikes & helmets & games & singing & dancing & running & playing – EVERY day. I have no word but ‘miracle’ to describe their status in life today- a miracle of the universe. Even as struggles remain and challenges are left to face- life is good nay, great.

I am hoping the wonder of 5 will add to the celebration! Happy birthday, Adrien & Tavish!

Category:

Preemie, Special Needs, Trach, Twins

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.

Category:

Feeding, kids, Medicine, Momma making, Preemie, Special Needs, Trach, Twins

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.

Category:

Feeding, kids, Medicine, Nursing, Preemie, Special Needs, Trach, Twins

Lessons from the Specific Carbohydrate Diet

I have many friends with kids who are sensitive to various foods or food components. They often ask about the diet we follow and find it too cumbersome to try to implement in their daily lives. That’s just how I felt when I began, but today in our house it’s just the “new normal”. I wanted to list a few of the things I have learned being on the diet that may help others to begin to adjust things without feeling overwhelmed.

1. Making homemade yogurt is CHEAP and EASY. I stir together and boil the milks I plan to use for the batch, stirring occasionally and shutting off the heat as soon as it boils. I stir occasionally (every 20-30min) while it cools on the back of my stove for 90-120 minutes. I add a cup of organic plain yogurt, whisk & then culture in the yogurt maker for 24 hours. The 2qt. maker makes almost enough for a week for us all. Easy-peasey.

2. Pancakes can be made from almost any mashed/pureed fruit and eggs. Mash a small banana, add an egg, cook like small pancakes. You have effectively deleted grains, gluten and lightened carbs. We love pumpkin here so we use pumpkin, honey & egg some of the time. If it sticks or doesn’t “seem right”, I add another egg.

3. Nut flours add calories. Many of our kids are struggling to put on weight. Nut flour can be added/substituted and add significant calories to a dish- PLUS it tastes great. White flour: 455 calories/cup. Almond flour: 672 cal/cup.

4. Baked peanut butter, honey, an egg & some baking soda make a delicious brownie-like dessert food. My kids call it peanut butter bread or “tannies” and even Tav will eat it!

5. Focusing on the veggie & meat parts of a meal effectively complies with SCD in almost all cases.

6. “Food rules” such as to “what to eat when” don’t apply with SCD. They need not apply in anyone’s way of eating/diet. Waffles for dinner is totally acceptable.

7. Bread can be made in the microwave! And it’s pretty good!

8. Cutting a loaf of bread can be done the “long way” to transform a short loaf into sandwich bread.

9. Meat sandwiches can be crafted on lettuce leaves- voila ‘wrap’.  SO yummy!

10. If I can do it, anyone can.

 

Category:

Feeding, kids, Preemie, Special Needs, Trach

Baking and Yogurt and Children, Oh My!

Because we are on an alternative diet [Specific Carbohydrate Diet], all foods are made from scratch- raw foods crafted into spices, sauces and meals. With a grain-free, starch-free, additive-free regimen, my kids’ skin is clear of eczema, vomiting is kept to a minimum and weight-gain has become a regular occurring phenomena across the triple threat. The only pre-made foods we get away with are salads [without dressing] and Larabars of the fruit & nut variety – not chocolate because it is not SCD.

Each Sunday begins like any other day, 2 nebs per twin, 1 neb per youngest, almond milk/formula time, breakfast… then the food prep begins. I have worked out my week so that yogurt-making is often due on Sundays. Boiling 8-16 cups of whole milk and 1/2 & 1/2 blend, letting it cool to 110 degrees before adding plain yogurt as a starter and beginning the 24 hour culture process in side-by-side yogurt makers. Tomorrow early afternoon we should have enough yogurt to get through a week, before making more next weekend.

Breads, waffles, muffins & meatballs are all made with almond flour or almond meal in our house. On Sunday and/or Monday I try to bake a loaf or two of bread so that a couple days/week my girls can have sandwiches like other kids. My favorite bread recipe is from the http://www.scdrecipe.com website for bread you can microwave- it smells funny when baking but makes great sandwich bread if you cut the loaf in half and slice lengthwise to make 3 slices per half. Yep. SIX slices of bread per loaf- why I have to bake more than one day each week. I have found GREAT waffle, muffin & scone recipes on the scd recipe site as well as in a grain-free cookbook I use as a guide for much of my cooking. [Everyday Grain-Free Gourmet]

I follow a blog or two whose focus is cooking grain-free. I have some recipes from http://digestivewellness.blogspot.com that I am wanting to try. Coming soon to my kids will be the “one pan chicken nugget dinner” she has crafted and perhaps some of her other dinner fare. Crafting all food from scratch is another part-time job in addition to all else there is to do for kids with complex medical needs, but it is SO worth it when the alternatives are continuous appointments and invasive repeat surgeries.

Category:

Feeding, kids, Preemie, Special Needs, Trach