This is Eli

A blog about Eli. A blog about survival – and by that, I mean life!

eli-at-clinic-2

Eli had his quarterly clinic visit! I attended and played the weird, hovering parent papparazzo.

Clinic day!

Clinic day!

Here we are at Children’s in OKC. Groups of people kept crowding us at the elevator, which I found annoying and rude. I hate being in close contact with anyone at the hospital. This giant group overtook us and I backed up on out of there. They didn’t get the hint. Group of ten dim people, did you seriously just crowd around me and expect me to load with you into a flippin’ germ incubator? GROSS. Has anyone ever heard of personal space? My attempts to mask Eli were futile. He likes to hide behind his stroller hood, though, and I was OK with that. We waited a long long time for an empty elevator. You can judge me when you have a child with a fatal lung illness.

Eli sees a specialist four times a year for cystic fibrosis. We get a throat swab to check for alarmingly-named bacteria that could hurt his lungs, a height measurement and weigh-in, pulse ox to see how well his blood is oxygenated, a nutrition consult and discuss any problems, equipment needs, issues or concerns I might have.

Pulse ox

Pulse ox

At this moment in time, Eli’s treatment routine each day consists of an hour of automated chest therapy on a vest machine, a dose of the inhaled med Pulmozyme – takes about 10 minutes – , an ADK vitamin and additional dose of vitamin D, enzymes before any meal and then any antibiotic he may be on. He has not yet had inhaled or IV antibiotic at nearly 3 years old, nor has he been hospitalized aside from two surgeries to fix his guts after birth and one ER visit when he randomly struggled to breath and scared the hell out of us.

S$%^& that sounds like a lot on paper but it’s become routine. We try to make daily treatments fun for Eli with cuddles, puzzles, M&Ms, juice boxes and the like. Some mornings we don’t have time to make it fun. Some mornings he screams and whimpers for a solid half hour.

That’s when his care routine starts to feel like cruel and unusal punishment, and times like these break our hearts. Mark took Eli’s vest machine into daycare for the first time a morning we couldn’t get it done beforehand. Eli looked at him, looked at the breadbox-sized contraption with its vaccuum tubes and camo vest attached, and in total silence, tears streamed down his cheeks. Guess he thought at daycare he was safe from being strapped to that damn thing, poor lil guy.

We have the option to get him on an inhaled Saline just to further bust up gunk that likes to settle in his lungs but haven’t done so yet.

I’d like to try and get a faster nebulizer before we add any inahled anything. Ten minutes may not seem like a lot, but it feels like a lot at the end of a long day and administered to a rootin’ tootin’ wild tot who isn’t, shall we say ‘keen’ to be strapped to anything for any amount of time. He briefly did his inhaled Pulmozyme and his vest at the same time, but that ended fast.

We have a new lung doc! Doc Mehdi took over for Dr. Royall at the OU Children’s cystic fibrosis clinic/pediatric pulmonology clinic. We had a good, thorough visit and she encouraged/reminded us to call over the weekend and page the on-call pulmonologist if we ever run into any health issues. Good reminder, and two days later, I’d use the advice.

Hi.

Hi.

 

His throat swab came back with “normal flora,” which means no alarmingly-named junk that can hurt him are stuck in his lungs at this moment in time.

His pulse ox read 97/100, which is OK.

Throat swab!

Throat swab!

He did a 180 from the last time I went to clinic with him.

No tears, screaming, inexplicably missing socks or nurse SWAT teams required to hold him down.

Here he is last time being over it.

over. it.

over. it.

This go-round, look at this happy fellow!

Big boy!

Big boy!

He gained more than a pound and now sits in the 38th percentile among all tots. He’s a pretty big boy. The 50th percentile is the goal, but his height and weight now are great, the doc assured me.

I’m glad he has a big appetite. This could change overnight, other CF parents of tots have warned me, so I’ll take it.

Eli had *just* gotten over a cough at his late September visit.

Two days after his visit, on a Saturday, he went from zero to crappy overnight, with a sore ear, cough that sounded horrid and gunk eyes. I took the doc’s advice and called the on-call pulmonologist. He got on amoxicillan right away and has been taking that round for nearly two weeks.

Well, he’s improved but still coughing. His base-line is no cough, so if he keeps it up, we’re going on a stronger antibiotic for yet another 21 days. Hopefully we can pound it out of the little guy with the rest of his milder antibiotic extra vest sessions.

Confession: We’ve been slacking on extra vest sessions. Mark and I haven’t had the heart to do it. While coughing he should be on 1.5 hours a day and we’ve been doing 1 hour a day. With fall break coming up, we’ll have the time to get back into it, to buddy’s horror, I’m sure. We’re going to have to start hauling his equipment to daycare.

The only other tidbit to report is that our regular physician has put in a request for Synagis, a shot that helps prevent RSV, a severe type of cold that can morph into pneumonia and hurt a CFers lungs. Bad news is that insurers are again being greedy in approving the $1,000 per dose shots that should be given 1x/month for five months. While Dr. Mehdi reassured me that Eli is bigger now and his lung plumbing can better withstand RSV if he gets it, I woulds still like the shots, especially since he’s in daycare now.

I fought hard for Synagis, only to be denied, two years ago. Last year, I was too discouraged to put up a fight.

This year, for better or worse, I’ve agreed to give a speech about my experience to illustrate how it is decided who gets what medicine.

I’m not bitter at my insurance company. The path to drug denial starts much earlier than a denial letter. How the drugs are priced, what studies have been done and whether or not the American Academy of Pediatrics lists the drug and the condition in an annual guide are all factors that can lead to approval or denial of a drug. I’d just like to explain it.

Because a mother (#$%^&*) never forgets.

xo

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