The tapestry of the life of a medically complex family

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.

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* 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.

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