The tapestry of the life of a medically complex family

Archive for February, 2011


Nerves. WHY do I still feel nervous when I head into a clinic appointment with pulmonary & GI? It’s not like pulmonary is going to come up with something profound … like, gee, they already have trachs. Maybe I worry I will forget to ask something, forget to get orders for something that will keep us able to maintain life at home. Maybe he will hear something in Tav’s lungs that I can’t hear- some change- it’s like walking into creativity central going to a children’s research hospital. You never know what you will come out “knowing” or “asking”- the latter being most likely!

With GI, a bit of it is routine. BUT there is the “alternative” diet discussion I know they will want to have. The talk that will ensue when I disclose that we rarely get 1/2 a meal into Tav on any given day- usually one yogurt and lots of peanut butter formula, but almost NO solid food. There will, no doubt, be bloodwork. My kids handle bloodwork like other kids handle a trip to the ice cream store- it’s one-on-one time with Mom, they treat it like vacation time! My kids are the ones who cry if they are the kid left in the stroller while the other goes into the lab. It’s a sad testament to their strength, their ease at dealing with the burdens of their medically complex life.

Maybe I fear they will identify a “deadline”- getting him back to eating food, real solid food, age-appropriate quantities of food. Will they push to have him participate in structured feeding therapy? Feeding boot camp? Order a return to a commercial formula that the nurses would feel compelled to comply with? UGH! I need sleep!

Baseline at Basekamp 2-27-2011

DATESTAMP: 02-27-2011
Meds across the Ward:
Pulmicort, Hypertonic Saline3% being switched to 5% ASAP, Albuterol/ Combi nebs, Miralax, Prevacid, Singulair.

Scheduled nebs per day: 10

Average nebs per day (past week): 16

Nurse shifts (last week): Overnight: 3; Day: 3; Evening: 2; Full days alone: 5

Oximeters: 3

Mist Compressors: 2

Neb machines: 3

Suction machines: 2

Oxygen tanks: Liquid: 2 lge., 60% Tav, 80% Adrien & leaking??, Back up/travel: 6E tanks, 3 D tanks.

Ambu bags: 2, 1 in nursery & 1 for travel

Back up trachs, suction catheter, HME locations: “nursery”, “study” & “kitchen”

Medical Cribs with climb guard toppers: 2

Doctor appointments scheduled this week: 5, all on Tuesday, Pulmo & GI x2, Endo x1

OT: 1×45

PT: 1×60

SLP: 2×30

IEP meeting: Scheduled for Friday AM, x2. Plan: Releasing A from services, Stopping SLP altogether.

BIRTHDAYS: 2 planned: 5 YEARS OLD on Wednesday!

Nights requiring oxygen: 4 Tav


As the birthday party drew nearer, people began calling to cancel due to illness. It is wonderful that people are beginning to understand that being sick and being around my kids is not a good option. The most frightening cancellation came from one grandparent who had a confirmed case of the flu, although she had received her flu shot this fall. She was planning not to come but hoping to send other members of her household with another family member. The stress and fear this phone message caused was the pinnacle of illness-related anxiety of the winter thus far.

As the day grew nearer, I tried to extinguish the flame of anxiety burning in me about these possible party guests. Although I spoke with the grandparent and let her know that a person who seemed healthy could be contagious with the flu before showing symptoms, I worried she would choose to send her housemates anyway. I couldn’t trust her to make the decision on her own. The ember of doubt that she fully understood the risk to my children a case of the flu would be has eaten away at me all week. Today I could stand it no longer. I called my family and canceled the party.

Will my kids be upset? Will they feel the loss of a party for their fifth birthday? Likely not as much as they would the loss of one of their siblings… These are regular considerations in our complex medical life.

Baseline at Baskamp 2-20-2011

DATESTAMP: 02-20-2011
Meds across the Ward:
Pulmicort, Hypertonic Saline3% being switched to 5% ASAP, Albuterol/ Combi nebs, Miralax, Prevacid, Singulair.

Scheduled nebs per day: 10

Average nebs per day (past week): 18

Nurse shifts (last week): Overnight: 6; Day: 3; Evening: 3; Full days alone: 4

Oximeters: 3

Mist Compressors: 2

Neb machines: 3

Suction machines: 2

Oxygen tanks: Liquid: 2 lge., 70% Tav, 90% Adrien, Back up/travel: 7E tanks, 3 D tanks.

Ambu bags: 2, 1 in nursery & 1 for travel

Back up trachs, suction catheter, HME locations: “nursery”, “study” & “kitchen”

Medical Cribs with climb guard toppers: 2

Doctor appointments scheduled this week: 0, last week we ended up with 3 & 2 phone consults from pulmo

OT: on vacation

PT: 1×60

SLP: on vacation

Nights requiring oxygen: 6 Tav

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.

Missing Something

So, today I have this appointment with our ORL- great, amazing surgeon. He’s been helpful throughout my whole experience with my twins and their trachs, has assessed my youngest several times with regard to her noisy breathing, obstructive apnea, central apnea. So when he tells me my questions about her continuing central apnea and what we should plan to do next are too complex to discuss via e-mail – a common way for us to have communicated in the past – I gassed up the car and went in to see him.

When I had e-mailed him last week about the sudden increase in oxygen need of my trached son, asking if he thought it might be that his trach was too short- and how would he assess it, I got the same response. I decided to take my son along with me as well. Today we drove 90 minutes in traffic for a 45 minute journey to get there on time. We waited an hour in the exam room for him to be available. Then, 15 minutes later we are saying good bye after he says we should re-do a sleep study without intervention (no CPAP nor BiPAP) for my daughter, before we do another study with intervention if they decide it might be necessary from the first sleep study- ahm, yeah, it takes nearly 2 weeks to get results, we’re talking a month likely for both studies. And, well, if Tav is voicing past the trach, then he is getting air well, so it must be a lung problem- go see pulmo. “Bye.”

Am I missing something? We reviewed exactly the information shared in the e-mails I wrote. “Do a sleep study at baseline without intervention.” “Voicing = trach size fine.” Is there something complex about that information? Am I missing something?


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