The tapestry of the life of a medically complex family

Archive for March, 2011

Baseline at Basekamp 3-28-2011

DATESTAMP: 03-28-2011
Meds across the Ward:
Pulmicort, Hypertonic Saline being switched to 5% as a blend of 3% & 7% when the 7% comes in, Albuterol,  Combi nebs became scheduled for Tav, Miralax, Prevacid, Singulair. TAMIFLU- to finish on Monday. New orders for Zofran for nausea & vomiting AND Orapred for respiratory status severe compromise. Deep breaths by Momma!

TRACHS:  Tav  3.5 Neo;  Adrien  4.0 Neo Shiley changed Monday

Scheduled nebs per day: 10

Average nebs per day (past week): 25 (yes, more than hours…)

Nurse shifts (last week): Overnight: 3; Day: 6; Evening: 3; Full days alone: 1.5

Oximeters: 3

Mist Compressors: 2

Neb machines: 3

Suction machines: 2 portable

Oxygen tanks: Liquid: 2 lge., 40% Tav, 60% Adrien; 3 empty E tanks in the last 4 days.

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: 11, over 2 days, 8 are on Friday- Friday night there should be drinking! But, alas, only nursing until 10p…

OT: 2×45

PT: 1×60

SLP: 0

Nights requiring oxygen: 7 Tav (max. 4L, two days); 3 Adrien (max. 3L, Thursday)

The care of trachs

I know, as my trachees turn 5, you would think I would feel there is little left for me to learn about trachs, you’d be wrong. I am always looking to find out more info on ways to make things easier, better, healthier for my trachees- just as parents do with any child’s changing needs as they age. Yesterday I went to a presentation by a doc [http://children.photobooks.com/directory/profile.asp?dbase=main&setsize=5&last=Graham&searchButton.x=0&searchButton.y=0&pict_id=3453790 ]]

This doc is a specialist who travels around checking in with and assisting families to set up/maintain a home equipment environment that best supports their child & his/her respiratory health. I learned, or had reinforced, things about the equipment in my home that supports the health & respiratory well-being of my children. I learned new information about the settings on our mist compressors, about oxygen concentrators, and more about the use of oxygen to maintain my kids’ oxygen saturation.

As I was sitting in the group, learning these things, I thought about how much research I do, medical journal selections I read, and my capacity for learning in general. With all that I do, I still learned some new information at a presentation on a Saturday morning. I think about the average parent, the person who takes home a child with significant medical technology dependence that they were not expecting, and am again thankful for the area in which I live. Although I do not have a “point person” on my kids’ medical teams to learn the trach care & equipment changes, there are resources available for me & other families in our area. This man’s card is not simply going in the bottom of my purse- his contact info. is now in my phone alongside all the providers who serve my kids directly. I am hopeful that his project will expand to other areas as its effectiveness is documented. Health to you all!

The Speed of Sick

Yesterday we had an average day. An average day being the fifth day Keva was banished to the living room as she has been sick and we want to minimize cross-pollination. An average day being Adrien showing the first signs of a runny nose and some sneezing. An average day of Tavi being his usual energizer bunny for most of the day with occasional need for rest- not much hint that today would be today.

Today began with overnight requirement for oxygen that was eventually able to be weaned. It continued with sneezing noises from the trachs of both cribs, with continuous “barrel-rolling” and being turned over for Tavi. It was a more alert & wakeful night than usual for a Mom night so I got very little sleep- but it did not really hint at today’s ride. A ride not unlike being thrust ahead of an avalanche, rolling and roiling and clawing for footing or a handhold to stop the descent.

Adrien has quickly gone from a few sneezes to a fever, increased respiratory rate and decreased appetite. Tavi has gone from apparent health to severe respiratory illness including his sister’s symptoms and adding on vomiting of any intake except a few ounces of pedialyte spooned into him over hours and hours of time. He is in that place, walking that line, doing the dance of “will we/won’t we”- the place where most parents would be in the ER and I work to train the newer nurse how to function like she is in a PICU, without becoming so nervous that she wreaks havoc and forces us to go into one.

The speed of sick in our house is talked about with new nurses as they come on. They nod, they feign belief, but mostly they deal with vibrant, energetic, stable & well 5 year old twins with trachs. Then one day, sick comes. That day is an eye-opener, a test of their confidence, ability, flexibility & belief in my knowledge of my kids and what’s best in which situation. The speed of sick in our house takes every skill a nurse might have- including the ability to listen & to learn at the same speed as the disease.

Decline

Decline is a word I hate to use to describe any health behavior in my children. It is a terrifying word implying “active change for the worse”. It is the word I am now using to describe my son’s respiratory status- and I want a different word, a different experience. I am DONE with “decline”- I will settle for “plateau”… can anyone give me a “plateau”?

Since last summer, Tavi has gone from being mostly clear, rarely suctioned, rarely secretions thickening in the trach to a kid who needs suction almost daily and does worse with any level of activity- even when cool. He regularly needs saline nebs every 2 hours when off his trach mist color- and sometimes needs them in addition to the mist. He has declined throughout the winter to having more secretions outside the typical activities where I saw them previously. Outdoor temps have not even begun to rise and he fatigues regularly during low intensity Physical Therapy sessions in the cool playroom.

Since September, Tavi has required a saline neb during each PT session. Since early February he has required oxygen- typically 2L every night, but sometimes as much as 4L. For 4yrs 11mos of life with a trach, Tavish required no oxygen on sleeping unless he was actively ill. He has yet to develop an active illness since the oxygen requirement began. As we head to the sleep pulmonologist appointment next week, I fell like I need to get familiar with forming this word in my mouth as part of the description. HOPING it is just a temporary problem. Tav’s sleep study cannot come quickly enough for me.

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!

Baseline at Basekamp 3-20-2011

DATESTAMP: 03-20-2011
Meds across the Ward:
Pulmicort, Hypertonic Saline being switched to 5% as a blend of 3% & 7% when the 7% comes in, Albuterol,  Combi nebs became scheduled for Tav, Miralax, Prevacid, Singulair. TAMIFLU (we think it is what Keva & I have- TERRIFIED)

TRACHS:  Tav  3.5 Neo;  Adrien  4.0 Neo Shiley changed Monday

Scheduled nebs per day: 12

Average nebs per day (past week): 14

Nurse shifts (last week): Overnight: 3; Day: 4; Evening: 2; Full days alone: 3

Oximeters: 3

Mist Compressors: 2

Neb machines: 3

Suction machines: 2 portable

Oxygen tanks: Liquid: 2 lge., 80% Tav, 90% Adrien

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

OT: 2×45

PT: 1×60

SLP: 0

Nights requiring oxygen: 5 Tav (max. 4L, Friday); 1 Adrien (max. 3L, Saturday)

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