The tapestry of the life of a medically complex family

Archive for January, 2011

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.


5 years this side of normal

My twins turn five in less than that many weeks. Five. FIVE years with trachs.  Five years of neb treatments. 5 years of medication that reduces their adult height by half an inch a year. 5 years of oximeter probe placement on their toe or foot for the overnight. 5 years sleeping in a crib- now a metal “home-medical” version, since 2 years of age. 5 years of semi-annual bronchoscopies. 5 years of annual endoscopy. 5 years of regular enough bloodwork that they tantrum when it is NOT their turn. 5 years of 6-20 medical appointments a month. 5 years of never having a pediatric “well-visit” [in the pediatrician's own words: your children can use my Thursday 'sick' appts- they will never be well... & he  loves them] 5 years with reduced voice volume, ability to manage secretions- having trach secretions. 5 years traveling with a suction machine along the bike path, in the car, to family events. 5 years being prisoner to the playroom during the coldest and warmer days of the year- they tolerate temps between 20 & 72 degrees F, otherwise they stay within our climate-controlled playroom & kitchen. 5 years of home nursing in addition to family member care. 5 years of fear of the common cold, the flu, a sniffle. 5 years of radiology roulette: chest x-ray, upper & lower GI, modified barium swallows. 5 years of Herculean effort to continue-  5 years living this side of normal.

The Invasion

Being Mom to children with significant healthcare needs has its share of challenges and celebrations. Each day holds the usual jobs of parenthood including laundry, feeding and reading stories etc. In addition to these tasks, each child with complex medical needs has ongoing medication & medical support necessary for getting through each day at home and staying healthy. An average day at my house includes all the general tasks of parenting 4 children, as well as between 14 & 20 nebulizer treatments of airway medications or saline. There is chest PT twice daily, for each twin, OT, PT & Speech follow-through, inventory of supplies, medication and oxygen tank levels. When you are fortunate, you have healthcare that provides nursing to assist with all these additional tasks- but, with nursing, comes a whole host of other concerns.

I am very fortunate to have nursing. I have a group of some of the most talented nurses who do homecare in our area that come for multiple shifts a week. They inventory supplies for me, observe ongoing and changing health status of each twin, dose medications, assist in the feeding routines, and monitor my trached twins overnight 3 nights a week so I can get better sleep. My children love and enjoy each of them. They are a blessing for my family.

They are also the single greatest invasive feature of my kids’ medical life. They are almost “always” here. When I have a great day, they are here. When I have a horrible day, they are here. When I don’t want to see another human being because I seriously am feeling like I’m gonna lose it- they are here. Oh yes, sometimes when I want them here, they are not, but more often it feels like they are always here.

There is no privacy. No hideout when you want to read a trashy magazine- or eat the whole pan full of brownies. You “Instant Message” your friends because it is a silent & relatively “private” way to talk with people you once had actual human contact with. Even though they don’t try, they can overhear. An observer of every nose scratch, every “mom-of-the-year” moment- and the ones that are “notsomuch”. It is like an invasion. Yes, they are wonderful support, but your “private life” is a ne’er returning thing of your past.

Sleep – or “Lack-thereof”

Being a Mom to children with special health care needs causes you to make adjustments. There are places you no longer frequent, group activities you avoid and friends with whom you lose touch. Your focus each day becomes medical treatments, appointments, follow-up and doing everything you can to keep your children healthy and outpatient as much as possible. The thing adjusted the most for me has got to be sleep.

When I have no nurse, which is 4-7 days each week, I ‘sleep’ downstairs in the nursery/playroom on the pull-out couch. I do evening breathing treatments for all 3 children, tuck the twins in their cribs with their trach mist on, and build the “cushion bed” for my youngest across from the cribs. I sing the “I love you” goodnight song to each, they sing back to me. For the next couple hours, I sit in the next room, getting up frequently to check to see if they are sleeping, to check that trachs are still correctly placed, that respiration rates are within normal limits, that breathing is not noisy or labored.  When sleep is achieved, I place oximeter probes on each foot and line up the machines in the order of bed placement- making it easy to determine who is alarming when they do so. Frequently the oxygen saturation levels of the twins are identical, heart rates too. The unfortunate data point I note most evenings is that my youngest gets the lowest oxygen sat levels of the 3some. She most predictably alarms during deep sleep and just before awakening- not encouraging data points but frequently occurring.

Although oximeters are placed, false readings are common and I check the twins a minimum of once every half hour. I need to stay up until at least 11p to refill the air neb bottles on the mist compressors. After re-filling and realigning the bottles on the compressor, I am finally ready to open the pull-out. My pillows travel with me- upstairs and down- and I lie down armed with a flashlight, my cell phone and my glasses beside me on the cot. Frequently at first, and then about every 2-3 hours, I check the twins’ positions in their cribs to ensure they have their trachs in place and mist masks over them. Tavi has a habit of rolling onto his stomach and knocking off his mask, at times even occluding his trach with bedding, pjs or his own arms. Usually he lies still the first few hours of sleep and goes through “barrel rolls” for the first 15-20 minutes after he hears the pull-out springs. We do this dance every night and finally he settles enough that I am able to drift off for a few hours before checking- and often repositioning- him again. Adrien sleeps frozen in the same position nearly all night- she is my easy one on the overnights when well.

On the days I do have a nurse, I am frequently still up until 11p or later. I have to stay up until “shift change” most nights because timeliness is not guaranteed and nurse shifts frequently do not overlap. When I have a nurse, I get to sleep upstairs with Keva in her room. I call it “sleeping in a bed” but it amounts to settling in on the twin mattress on the floor along the back wall of her room. She often still wears her monitor, it may still alarm, but I tend to get up to 5 or 6 hours continuous sleep on the nights I have nursing. Uninterrupted sleep is a thing of the past, a thing with which my body is no longer familiar, a thing that is a forever struggle to achieve because the opportunity for it is so irregular. I take antihistamines, I drink herbal tea, I do what I can to get myself to sleep quickly on those nights when I get the chance to be “off duty” for the fearsome 3some. 4 years sleep deprived and counting. Sleep deprivation is a state shared by parents of new babies everywhere. When those babies have complex medical needs, it becomes a way of life long term.

Feeding: the Nightmare

Parenting 3 preemies, 2 of them ex-27weekers with trachs, is no walk in the park. Each of them has had their challenges with feeding/eating. The least of my concerns has been my youngest who got those 6 extra weeks in utero. She has difficulty managing bite size- but she LOVES to eat, asks to eat, eats everything on her plate at every meal. She does need all liquids to be thickened or she aspirates small amounts into her lungs, but NEVER do I have trouble getting her to eat variety or volume or … SOMETHING every meal.

My other daughter has been through her share of feeding challenges. She started oral feeding ahead of her twin brother and has maintained her lead throughout early childhood. She has had difficulty with textures, taken a long time to learn to chew and went through her projectile vomiting phase. Sensory focused intervention and a consistent behavioral response to the vomiting helped her to get to the place of being a pretty competent eater. She has bad days, moments in time when her resistance to eating is strong, but I feel like she is stable in feeding.

My son Tavish, on the other hand, is the stuff feeding nightmares are made of. He started life being resuscitated, had a tube forced down his airway that scarred him badly, making the trach necessary right away. He was fed by nGT for the first six months of life receiving nearly continuous feeding the entire time- except when his sister was ripping the tube from his face and out of his nose. At 6 months old, the docs placed a GTube through his abdomen into his stomach. 3 or 4 weeks later he was hospitalized for a month because he was struggling with an infection in the GTube. When he finally came home, weaned off antibiotics and the GI meds they had tried in the hospital and found out he was allergic to, he went back on continuous feeds for another couple months.

By the time he was one, he was fed 22 hours/day through the GTube, and given a “challenge” bottle to try to teach him to feed by mouth about 90 minutes after the feed was shut off. He eventually was able to take in the 2 ounces by bottle that they targeted but never moved beyond that while he continued the 22 hour feed. By the time he was 15 months old, the continuous feed was reduced to 12-14 ounces overnight and he took the rest by small bottles spread out across the day. By 16 months, he had learned that “fullness” was 1-2 ounces resting in his belly. He treated solids [crumbs of baby puffs] as though they were poison being placed under his fingernails via glass shard. NOT fun.

Add to these experiences a sensitivity to lactose- which he was fed in every formula until about 3. 5 years old- and feeding was NOT a pleasurable event. Diarrhea and vomiting were an everyday occurrence, less the 6 months no-vomiting that the Nissen Fundoplication had allowed before failing. Pain from the GTube was a near daily complaint by the time he turned 4. Last summer he would pull t-shirts away from his stomach when sitting or slide the pj tops upward to prevent their rubbing against it. Writing all this down, it seems no wonder that feeding and food are his worst times of day. I pulled the GT- AMA – in September 2010 when it was bugging him. It closed over nicely before the next nursing shift and that particular device is now only a memory in the story of his history.

So, fast forward to today. I slave over organic, raw whole foods to craft “formula”, 24-hour cultured yogurt and every morsel of food for intake from scratch. I shop for ONLY the brand of organic peanut butter that is truly smooth – the only organic brand without “flecks” in it so that he doesn’t “feel spots” in his peanut butter formula. I try to accommodate his desire not to have ‘thick’ formula by adding more almond milk, but when he refuses to drink enough several days in a row, I fall back on the thicker version [77cal/ounce]. I try to vary the food options, add in veggies which have been a long-standing preference, and enough access to the simple carbohydrates allowed on the diet we follow.

What do I get? Several forms of torture, including refusal to put the cup in his mouth, insistence on only the cup from his ENT’s hospital, an inability to ingest formula and any sort of food in the same sitting. He refuses all solids, including things he requests, things he loved in the past. something he might eat on another day. SCD yogurt is the ONE food we seem to be able to get in him every day- but he takes bites that are about 1/4 the infant spoon he uses to eat, insists that he cannot feed himself when he’s not in the mood, holds bites in his mouth for as long as 10 minutes at a time- how does he even keep an mL of yogurt in his mouth for 10 minutes??

Without a GTube, PO [by mouth] is our only option. He is gaining weight, we are getting in a vitamin most days, but the 6-8 hours spent at the table really drains me in addition to the 2-3 hours of nebs per kid every day. Where is the magic wand? I am sure one of you has taken mine!

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 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 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.


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