The tapestry of the life of a medically complex family

Archive for July, 2012

Sticking the Landing

I guess traveling this trach journey is complex and busy and adds some limits to our lives on the day-to-day. Many of our docs want us to rush toward decann – I cannot TELL you how many docs have the “Get it out. Get it out. Get it out.” mantra on their letterhead… And, I am in FULL and complete agreement that THIS is our plan- but I am not willing to rush it at any risk.

Currently, my son demonstrates regular difficulty breathing- his resting respiratory rate is in the mid to high 20s, while his sister rates in the teens. Last night, after an afternoon visit by a friend and spending time outside playing [mild/moderate activity bursts…] for less than an hour, he had a very high Respiratory Rate (RR) through dinner and into evening nebs- high 30s/low 40s while seated. At one point he began to look “dark” [his version of blue…], complaining of headache and his sats were hovering in the mid-80s [84-87 bounces] until I began running the hypertonic saline off oxygen. He had just had an albuterol/atrovent duoneb and should have been really “opened up”, but the fatigue of the day caught up with him and he was not moving oxygen efficiently. After nebs, his RR continued to be high, with lower sats than normal on 1L* versus his normal 0.5 … While in bed, even after falling asleep, I continued to get RRs in the 40s while he satted 96% [his norm is 98-100 while on 0.5L oxygen]. After a couple dips and continued high RR, I increased his Liter flow to 1.5L and he finally seemed to rest more comfortably. I am MOST thankful our docs know that Trachboy does not indicate any readiness to have his trach removed at this time.

With regard to Trachgirl, she breathes with a pretty normal rate for age with her trach in place, across all activities. She has higher energy than her brother and sister, but still not nearing typical for her age- and she does show some heat intolerance, although tolerates outdoor temps much better than her brother. She passes the “screening” pressure for the Passy Muir Valve [speaking valve] to be used, without modification, although increased pressure [above limits] was noted while speaking [seated on a bed]. She also once passed a momentary test for simulated capping [capping blocks air into and out of trach & requires a person to breathe through their upper airway]. Because of this, she is the child some docs want on a faster track to decann- altho our surgeon has told us for YEARS she would need more extensive surgery to get there. Our surgeon seems to have agreed to the “team” plan [not including me] of working to fast-track her to a capping trial, without surgery for the collapse at her trach stoma. This type of plan has been my 100% reason to keep our ENT at a separate hospital- because it is out of character for him to “experiment” versus repair…

The data I have? Trachgirl tolerates the PMV for about 45minutes consistently. She regularly has oxygen desaturation during use of her speaking valve, especially if she is moving around playing. She slows down, or sits down, and asks to have it removed- saying she feels like her “stomach is heavy”… I continue to collect the data to share with the team- primarily through nursing notes of time tolerated and events. The docs may be concerned that I am not running with them to make this leap for my child. I guess sometimes they lose focus that: It’s not the jump you have to worry about; it’s the landing.


* Oxygen flow is defined in its rate: Liters per minute. Tav typically is on 0.5L/0.5Liters per minute of flow, all day every day.



If there were not enough reasons for us to stay mostly inside this summer, we can add another: cellulitis. Youngest got bit by a bug on her arm and it swelled up quite a bit pretty fast. By the next day, about half her forearm was swollen and there was a red patch 2.5 inches by 1.5 inches. It was itchy and she complained of pain but no fever and it seemed pretty stable at that size so we watched it on Friday. Saturday morning, she awoke a bit crabby. She sat down to eat breakfast and complained about her arm. The swollen area had doubled in size and the redness was spreading down into her wrist and up to her elbow. Made it to the Saturday pedi hours and got her on antibiotics, which finally seem to have gone to work as of today.

Good thing we have her on Vitamin D…

Summer Bummer

Here we are nearing 4pm on a day I have 15 hours of nursing. You might think this would be the day I get tons of things done, get my groceries, do something fun. Well, today I was supposed to meet a new nurse- but she cancelled. Then we were considering going to a museum on the coast- regardless of how anxiety-provoking that is…
While getting the kids ready to go, the oxygen man arrived. We delayed un-dressing & re-dressing until he concluded his 45min process of removing, refilling then resetting the twins’ oxygen tanks. As I began redressing my Youngest, I stepped down onto a large dog toy, lost my balance & went flying onto my back. Another hour gone trying to ice & make sure I could keep moving & keep the headache at bay that threatens each time I land akimbo.

Then there we are at lunch time. 40 minutes for my feeding disordered Trachboy to eat a half cup of yogurt. 15 minute break at the table so we can get peanut butter formula in him so he has calories & more fluids for mid-day. Then I am tired. The idea of packing a car with suction, oxygen, portable oxygen, transferring the twin stroller versus the triple since there are 2 adults & my back is tweaked… The idea of going ANYWHERE complex medical family/ trach-style EXHAUSTS me. Sure there are errands I need to run- the packing & re-packing’s not worth that.

So the nurse & I sit & try to come up with ideas. The movies? No rated G movies are out right now. Bowling? ICK! Community shoes, seats, computers & balls? No thank you, never. The bookstore? The nearest one: “Leather & Lace” does not really seem like my sort of family adventure… B&N is 25-30 minutes away in 3 directions. Sure, it’d be fun, but I can’t afford to buy books this week while paying off the electric & gas that’re overdue & “on notice”.

EVERYTHING outdoor is out. The heat today is “wilting” for a ‘normal’ family. Add trachs, reactive airways, preemie lungs & the added bonus of “heat intolerance” as low as 70 degrees & every outdoor activity is out until September. Cooler temps at the beach? Sand, water & crowds are not our family friend either.

No wonder we rarely go anywhere. Fall is definitely better when it gets cool- but then there’s flu & RSV to avoid. Not really having a good day.

Fourth of July 2012

Today was another hot & humid day for us here. We spend hot days indoors because heat fatigues Trachboy VERY quickly and Trachgirl & Youngest have little stamina in heat themselves. On days like today, we crank down the AC and find things to do in the playroom.

My sister-in-law & nephew came to visit for a few hours and all the kids enjoyed playing with their toys as though they were new again. Trachgirl & Youngest drew pictures for our guests and Trachboy raced cars and spun weebles on the “ferris wheel”. It was a great way to break up the string of hot days we have been having and gave Momma some adult conversation! A great day which ended with cake! [how could it be anything BUT…]

Happy Fourth of July!

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