The tapestry of the life of a medically complex family

Archive for the ‘Feeding’ Category

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.

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.

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.


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.

Reconstruction with Rib Graft, Part 3

The nurses at the Eye & Ear are wonderful and caring. They worked hard to support my kids through the pain and discomfort of their recovery from airway reconstruction. They checked in on us frequently and, between the two beds, they were kept busy with IV adjusting or replacement and drain/wound care.

While they were terrific and friendly, my children responded with terror at each new person who walked through the door. They crawled to the side of their cribs where I was closest and tears flowed freely. They would wriggle frantically, crying soundlessly, trying to climb through the bars into my arms. I spent nearly every waking moment seated between their cribs, holding and rocking one or both of them. For each neb or procedure, they would sit in their crib, reaching immediately back to me as soon as it was over. After 3 days of fielding questions about whether they were “always this difficult” from a support staff member at the hospital, my insurance company approved skilled visits by the nurses who worked in my home. The relief in having that second set of familiar hands, a person who could spell me so I could SHOWER or eat a meal- which I had to do outside the room or during their sleep because Trachgirl had not been cleared for anything by mouth since she failed her swallow.

Trachboy’s first bronk post-op got the “thumbs up, A-ok” seal of approval and the stent was removed. It had been a week since we had tried anything by mouth for him so I worked at re-introducing the bottle in a chair outside our room while a nurse spent time with Trachgirl, 3 days into her post-op “fast”. Trachgirl signed milk at least 100 times per day, at the arrival of each person, because her hunger now exceeded her fear. For the next 3 days she signed madly, cried silently, batted eyes at each and every arrival, BEGGING to be given something, anything by mouth. On day 5, after much urging from me, the docs finally ran a blood panel. A resident said her bloodwork was “normal” to which I replied: “Geez. That IS gonna save me some money.” implying the no food option being equal to the food option seemed a “win-win” from my perspective… <sarcasm>

The fellow came in afterward and went over the bloodwork with me, told me about a change in her IV fluid make-up to balance some things out, and talked about putting in an Nasogastric-tube (NG) to give her some nutrition. I agreed to the NG, knowing she would have to be confined to her crib during feeding and that “welcome sleeves” would need to be applied to keep her from reaching her face and pulling the tube out, but hoping that the filling of her belly would help her to heal faster and be happier. When the nurse arrived with the feeding, she put it on a bolus rate and told me not to worry about it being too fast- after all, she was starving hungry and a full belly would only “feel good”. The feed began at about 10:45p, just before shift change, and the nurse left soon thereafter to report-out to the nurse who would be taking over for the night. Trachgirl sat in the middle of her crib looking like a beaten and defeated child: surgical scars and adhesive sutures, NG tube taped in a trail across her face & head, “welcome sleeve” arm braces to prevent her from getting her hands on her new “feed equipment”. She leaned back on the inclined crib surface and at about 10 after the hour, she began to vomit.

Trachgirl immediately aspirated the formula through the cleft from the stent, at which point she crashed, sats plummeting, alarms sounding, nurse running to our room. As her sats dipped to 68%, Trachgirl blacked out into the pool of her own vomit and I continued suctioning while the nurse ran to the nurse station to make the STAT call for the doc to get to the floor. Her heart rate dipped low, the docs arrived and re-assessed her as she returned to more stability. After a consult with our ENT, the resident removed the NG, radiology came to the bedside for a lung xray, and we waited for her EKG to be completed to be sure her heart rhythm had returned to normal. Sleep that night was a non-option for me. I spent the rest of the night seated next to her crib, holding her upright in my lap.

Reconstruction with Rib Graft, Part 2

The reunion between the twins was such a sweet moment it’ll get billing here, 3 years later! Trachgirl was just getting up from her nap when Trachboy & I were delivered home by med transport. The guys carried him in and Trachgirl sat up in her crib and gave her best “happy surprise” face- a round, open-mouth “surprise” with wide eyes and raised brows. Then she madly gestured that she wanted out of her crib and, fearsome visitors be hanged, she rushed to Trachboy and gave him a cheek-to-cheek hug, trailing her mist tubing behind her.

The overnight was difficult. Trying to manage Trachboy’s pain with the tylenol with codeine while he reacts to the narcotics- thanks again for the pre-natal cocaine baths, universe. He is agitated frequently and wants to be held all the time. His crying is silent but he is tolerating his feeds so at least that is going well. I will check in with the surgeon today about what else we can do to ease things for him- although Trachgirl’s surgery is our main focus of the day.

Trachgirl went under anesthesia pretty well today. It’s always a bit unnerving to watch her drift to the brink, kiss her head, and walk away, trusting that the anesthesiologist is “on his game” that day and going to return that same feisty, cheery kid back to you in some hours. They called me mid-way through her surgery, after the rib was harvested, which struck me as funny since they never updated me during Trachboy’s surgery and we did that one first! She progressed through the surgery as expected and was transferred  to the PICU for her overnight of sedation. The surgeon was not pleased with my report of how Trachboy’s stay had gone so he had her placed in the bed off the nurses’ station, hoping proximity to their “social area” would get her more attentive care. It was a false hope. They assigned a woman who was a mother of twins also- so she said- and they worked on me for hours to convince me to go home and get some rest. I finally left because Trachboy was having such a difficult time at home and the overnight nurse had called out.

Trachboy’s pain was out of control when I got home. He was panting uncontrollably, we upped his dose of #3 and he drifted into a fitful sleep. He was no longer tolerating feeds so we feared he would soon be dehydrated and called the surgeon early the next AM. He returned a call by 7am and instructed me to bring Trachboy into the ER to be admitted to MEEI for dehydration so the docs there could work on finding the balance of meds to manage his pain. I packed him up and headed in to one of the longest days in my parenting of them so far.

Trachboy was admitted to Mass Eye & Ear Infirmary that morning after a fight with anesthesia about how they would place the IV- topic for another blog post! We settled into room 1, over-looking the bridge and riverfront, right off the nurses’ station. With Trachboy properly ensconced with caring and skilled nurses, Nana for back-up, given the changed pain meds (tylenol only, no narcotic!), I headed over to the PICU where Trachgirl was still supposed to be under sedation.

I arrived to Trachgirl wide-awake and agitated in her crib. Her look of relief as I entered the room said it all. She had been transferred to one of the inept nurses we had had with Trachboy, and she had been trying to figure out what to do for a feed since there was no GTube! This nurse departed as soon as I arrived since she knew Trachgirl would be fine and we waited for the fellow to show up with our walking papers. Today’s PICU attending was the one who actually examines patients (yes, there is one who TALKS about them from the hallway and NEVER examines them, IMAGINE!). She checked Trachgirl out and told me about the report of her night- she had required HIGH doses of sedation to keep her under and they determined that giving her more in the AM would not be an option. Apparently another benefit of the pre-natal  drug exposure and extended NICU stay. Trachgirl was having her pain managed by tylenol only as well and we would be transferred as soon as possible back to MEEI with Trachboy. We saw no one else during the remainder of our stay there, unless I buzzed someone to get pain meds for Trachgirl. Finally, about 2pm, paperwork was finally completed and we moved to MEEI where we would stay as a family in our room with a view.

Trachgirl would not be fed until after she was able to pass a swallow test that indicates no aspiration on oral feeding. This was scheduled for the next day and Trachgirl slept fitfully with her IV fluids and pain meds administered on a schedule so she didn’t have pain get ahead of her like it had Trachboy. Holding the two infants in my arms that evening, stretching IV and monitor wires to their limits between the cribs, we felt like a family again.