I realize we are just getting started helping our children and family as a whole unit live and succeed with chronic disease. We have definitely had more experiences in the hospital and at the doctors than an average family, but know there are other families that absolutely have had more experience than us. Watching each of our infants experience at some point an extended hospitalization left us feeling confused, afraid, lost, guilty, and often very angry. In the beginning I remember a toe to toe nose to nose discussion with one pulmonologist on call one day in the hospital with my 7 month old son (who heart breakingingly screamed bloody murder through every IV). The pulmonologist told me to “get used to this mom, you have to get used to this, you have children with a chronic disease you need to expect weeks in the hospital.” I was furious. I told her I refused to accept the hospital as normal and I refused to quit asking to go home as soon as we could as often as I could. She never came back to our room, and I never saw her again. She asked another pulmonologist to handle us (lets be honest me). I think I would like to let her know now that I apologize and I understand. I’m not happy about it, and it still feel angry about it a lot of the time but I understand that being intermittently hospitalized is part of my children’s life. We also understand that our emotions are second to helping our kids do their best to prevail with positivity and hope. Our attitude will be mirrored and magnified in them especially if it’s a negative one.

Sunday, May 21, 2017

Throwing Up In Front of 800 Children



It was the kind of week where you throw up in front of 800 people.

Monday: Primary care physician says Ruby’s lungs sound junky enough that he wants me to get into the CF clinic right away.

Tuesday: Frank takes the day off work to get Ruby to the CF clinic first thing in the morning while I serve the day enjoying the jury selection process in downtown Phoenix from 7am to 4pm.

Thursday: I am sitting in the back of the packed school auditorium proudly watching my second grader (The Real Prince Charles) perform his 2nd grade fish play, "Sounds Fishy To Me." The Baby Ruby Forever on my knee starts the much dreaded puke cough. She had done it earlier in the day, enough for even the King of Brave Orson to ask “is Ruby going to puke Mom,” but she never did puke. She hadn’t been eating much for the past couple of days and I was so worried about her that I cooked up some of the only thing she had willingly eaten that day so far. Bacon.  

Yes I had packed her a sandwich bag full of bacon and a sippy cup full of calorie doctored up orange juice (since she was also on strike from drinking her straight up half and half) to eat on the way out the door for the Real Prince Charles’ school play.

The wet harsh cough begins about 10 minutes into the performance. The back quarter of the assembled school children all turn to see who is making that terrible noise. I turn her towards me and try to be nonchalant while she makes a few more terrible sounds and the back half of the kids turn around to spot the sound. Then bam. Up comes a terrible mixture of bacon, snot, and OJ. Once. Twice. Three times a lady I’m darting out of the auditorium through to the outside doors trying to be responsible and not spill any or get anything one anyone else. You know basically smashing barf all over myself and Ruby.

I left my poor mother sitting on the bench to see at that point surely all 800 children of the school turn to witness the great puke display.

But as we have found with our kids this unfortunate experience was a necessary evil at this young age when they have terrible allergies combined with the nasty thick CF snot they can’t clear the beast on their own. They must throw it up to get it out. Yuck. Sorry to all who had to witness the upchuck. BUT I promise I had been working so hard to help her with extra vest time, inhaled mucus thinners, broncodialators, hospital grade suction machines, etc. But puke happens and this time it happened in front of the entire assembled elementary school. 

The amazing fantastic glorious news (besides of course Ruby didn’t end up hospitalized) this week was…….SHE STARTED SWALLOWING PILLS!!!!! We saw an awesome video posted by the CF Foundation on Instagram of a little 15 month old girl using her applesauce pouch to take enzymes and decided to try it with Baby Ruby Forever and it worked! She found her own way to do it (no water, no sauce, just dry swallowing and sometimes chewing) but it was really easy for her and a huge awesome milestone in the life of a Cystic Fibrosis inflicted human! I tried to catch a really good pill swallowing session (she takes 5 pills every time she eats) and ended up with some pretty hilarious footage.

We are surviving this swirling world of existence with three CF children and one non CF child and I feel like every day this week really great things happened in our family. There were several moments this week (feeling nostalgic with my baby boy finishing preschool and dodging for now the hospitalization bullet) when I wanted to put the happenings into a snow globe so I could pick them up and watch them over and over again. Oh and good news, Frank ran such a flawless day with his clinic visit and perfect treatments with all three kids morning and afternoon he said he would consider switching places with me if I could find a job that made a million dollars a year so if anyone out there is hiring I’m worth it baby!  

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1 comment:

  1. KatheeJune 5, 2017 at 1:30 AM

    Your writing ability should certainly be worth a million to someone. It is worth a million laughs to me! I could feel that ooey gooey barf bucket running down my chest that only stripping down in the shower would fix. Been there done that but not with 1600 eyeballs watching. No one can accused you of living a boring life

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