'S' is for... Sick Day

Gracie's sick. Not the scary, hospital kind of sick, "just" sick... again.
And she missed school today because of it. Bummer.

I've suspected something big was brewing the whole week as she's been needing tons of sensory input, won't keep her clothes or shoes on even in the car and has had that "look" in her eyes. Sinusitis, Tracheitis and still an ear infection that had been percolating the week she got home. Ugh. The tracheitis is frustrating because she is currently mid-cycle on her bi-monthly TOBI treatments (an inhaled antibiotic to help with pseudomonas, tracheitis and overall lung function). So, she's been prescribed an additional antibiotic again.
She's uncomfortable, clingy, her nose is running, her eyes are running, her oral and trach secretions are non-stop. We can literally "tip her over and pour her out." I quote the lyrics from "I'm a Little Teapot" because that's actually what John does sometimes when she's like this - - he helps her drain. We sing it to her (she can't hear us, but Preston can and he'll do the little dance for her). It sounds a little barbaric, but it gives her a tremendous amount of relief much faster than constant suctioning. Gross, I know.

She had a bevy of appointments this week.

Surgical follow-up: He is very pleased (as are we) with how she's doing from that standpoint. Her weight-gain is good (31.6 lbs and not much is fluid retention) and she's tolerating her current feeding regimen well - - something we didn't dare to dream possible. (With this current illness, I've had to slow her feedings down considerably because she is coughing so much which makes her prone to gagging and is hard on the fundo.)

Cardiology: She is "stable." He is pleased that, with all her body endured since May, her heart managed to come out the other end without worsening. The echo looks "good for Gracie... which means it's unchanged."

Infectious Disease: She was not pleased about my suspicion that Gracie was getting sick, but feels that Gracie's issues are likely not stemming from an immune disorder. She has ordered a full immunological work-up to be certain and we will complete those labs once she's well and we have endocrine labs to combine into one draw.

Pulmonology: He prescribed the antibiotic. We discussed the different ways we can treat this recurring issue, which are limited due to her resistance to so many meds. He reiterated some things from the hospital... He is pleasantly surprised with how her lungs look on the Chest CT - - he had expected them to look much worse. He paid us a high compliment again, saying that her status is clearly the result of diligent, constant care. He also stated that, because of her swallowing issues, this problem is not ever going to be solved, rather "managed." She will always be a junky trach and she will always (and probably more frequently now) be fighting bugs as her lungs continue to deteriorate over time.

On the horizon: ENT, GI, Neurology, Ortho, Endocrinology, Audiology.
Good grief.