CF Is Not Forever: May 2017

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!

Sunday, May 14, 2017

The Hell Raiser and the Butt Kisser A Memoir of a Medical Mother

The IV team had unknowingly IV'ed and taped his thumb sucking hand.

We were enraged and helpless caught up in the moments after the surgery of a g-tube placement of our son. What we were told by the surgeon in regards to when he could eat after the surgery (even popsicles or drinking ice water) had not been what she had then relayed to the nurses taking care of our son post op.

See don't I look like a nice sweet butt kissing

mother? But don't forget I have a pair of hell

raising pants and I'm not afraid to put them on.

He became desperate for something to drink. He was hungry and already sore and hurting from his new “site.” He was already experiencing so much trauma with the tubes, beeping machines, an IV in the hand he sucked his thumb with so it was all boarded up and taped to the nines. We just wanted to provide the relief that we could but we were trapped in uncharted post op instructions. The fact that the surgeon had told us one thing and then either that thing was a lie, or she had just neglected to relay the message was infuriating. We begged every nurse and doctor that came into the room to ask the surgeon, double check, please we know what she told us! But to no avail. Everyone was too afraid to bother the high and mighty surgeon for such a question. They each assured us that he wasn’t dehydrated because he was hooked to an IV. This gave little relief to his dry mouth, cracked lips, and cravings that come with not eating or drinking for 30 hours. All we could do was cry with him and not eat ourselves as the tiny little boy wrapped up in tubes and hospital blankets begged to eat and we had to say no. Until nurse H came on shift.

The whole family after the surgery (baby Ruby in my stomach

yet to be born and hiding behind her older sister in this picture).

Nurse H came in bright and early the next morning and we immediately informed her of our sons plight. She immediately informed us “don’t worry I’m the kind of nurse who isn’t afraid to ask questions, I get myself into trouble quite a bit for this very thing.” She tracked down the surgeon called her, paged her, finally getting a response. Yes of course he can eat, I told you he could last night at 8, the surgeon said.

To quote Mrs. White from Clue, “flames, flames on the side of my face.” The anger! The infuriating nonsense that had happened should never had happened. My son hurting already from his new stomach hole and crying himself to sleep from hunger and thirst pains on top of it should never had happened, there was no reason for it besides a negligent surgeon who had created such a fear inducing reputation for herself to stop nurses from asking follow up questions.

Then. Then was the moment that I knew I would need to be a bit of a hell raiser like my favorite Nurse H to prevent this sort of bologna from happening to my kids again. Side note this happened at a different hospital than the one we currently attend and we will as long as we can prevent it, never go back to the other one again.

The spell that was on me of being afraid to question charts and follow protocol was broken. I would no longer bend to the will of the chart. I would get my son a cup of ice water and soup and bread dang it! Get out of my way I’m going to the cafeteria, my son is hungry and I’m feeding him. I’m not waiting for room service. Watch out. Clear the elevator you’re not going to want to ride with the crazy mumbling mother, it will be uncomfortable.

On the other hand I continue to try with all of my heart to be as grateful and kind to the medical staff that work with my children in the hospital. Or in other words I try my darndest to be a talented butt kisser. I think it is BEYOND important to start out doing everything I can as civilly and kind as possible with extra sugar, thank you, and a cherry on top for all your efforts sir and mam’ that work with my kids and their CF, but please don’t mess around we take their comfort and care very seriously.

I'll tell you what I'm a natural rule follower. Being obedient is OK with me, but situations like this and other enlightening experiences along our medical road have helped me to see that its important to be a butt kisser that raises a little hell when the occasion calls for it.

Tuesday, May 2, 2017

I Caught The Ball of Poop, And She Helped Me Clean It Up!

I really have to give a round of applause to our CF clinic team at Phoenix Children’s Hospital. Today when we came in the nurses were waiting for us in our room to do vitals. We always get two nurses (sometimes three) since they are doing vitals for three patients at once. Its pretty nuts in there as soon as we all step in so they have to be efficient and awesome and they always are.

Today’s visit I let Charles, our non CF kid, decide if he wanted to attend the appointment or not. Usually I make him go to school but he decided he would like to go today so we were all together.

Everyone was keeping their sanity pretty well. The clinic is really good at timing all the people we have to see so that we don’t have any long lags of time when we aren’t seeing and talking to someone (social worker, pulmonologist, nutritionist, respiratory therapist, nurse) which I appreciate. The appointments have always been long because each CF person requires being seen by 5 medical professionals so multiply that by three and we’ve got 15 different appointments so it’s no wonder if takes almost 4 hours.

Ruby had the roughest time today pawing the door and prowling around the room desperate to leave like a hungry tiger waiting for the zoo keeper with the steak. She is ready to be toilet trained but I’m putting it off until school gets out so we don’t have as many car rides. She is obsessed already with taking her diaper off and sitting on the toilet. Demanding it! So it was no surprise today when the boys kept leaving (5 times for the bathroom, because that’s normal right? NO they wanted to play in there the little turkeys) to “use the bathroom” that she began screaming “POTTY ME, MY TURN,” and tugging on her diaper.

Well I fought her off while I was talking to our charming pulmonologist who is very skilled at what she does and is the most people-iest people person doctor I have ever met. She makes me feel totally normal to have the circus happening all around me with three CF kids and today was no exception.

Ruby had pooped and it smelled awful and we were all trapped in a 10x10 room. Maelee kept saying, “MOM RUBBY POOPED” (just you know in case I hadn’t smelled it yet NEWS flash sister my nose works great I smell the RANK!). So while I am attempting not to scream at Maelee and also to casually change a poopy diaper a few feet away from another adult I respect and admire and also keep eye contact and focus on important health discussions I all of a sudden am holding a large ball of poop in my hand.

When I had wrestled Ruby to lay down on the exam table to change her diaper and began to take off her skirt I did not know she had half way taken the diaper off already, sneaky like a ninja. When I pulled her skirt down the magic moment of the solid (thank heavens) ball of poop rolled perfectly into my hand and also the mess of the rest of “it” was smeared inside of her skirt, up her legs, and on the exam table. Really a magic moment for me catching Ruby’s poop ball, with another adult whom I admire and respect watching me two feet away.

What was our charming pulmonologists reaction? She gloved up (genius!) and came over with sanitizing wipes to help me clean up the mess. She also provided some handy biohazard bags (I love this lady! She just made it into my best friend dream team) and didn’t flinch with disgust for a second during the whole messy process.

I’m impressed, pleased, and grateful for her kindness and grace in such a crappy situation (wink).

To top it off she announced with grandeur that “this is a momentous occasion! All three of your kids are in the GREEN ZONE!” Which translates into all three kids are above the 50^th percentile for BMI on the CF growth chart. This news is just what we were hoping for. Orson has NEVER EVER EVER been in the green zone since birth. Momentous occasion indeed! What was my reaction to her announcement? I started chanting, “GREEN ZONE, GREEN ZONE!” and our pulmonologist joined me (I've always loved starting a good chant). It has been an ounce by ounce miracle to see Orson go from the 13^th percentile to the 67^th percentile over the past two years.

What will I do with this memory of holding a poop ball in my hand in front of our incredible fantastic pulmonologist? Treasure it. Definitely move it to the top of my best awkward moments and then move it to the top again of the coolest most appreciated acts of kindness I’ve seen.

Yep I’d say our CF clinic team at PCH deserves a round of applause to deal with us knuckleheads for 3 hours and 40 minutes every three months. Did I mention our respiratory therapist left the room saying he needed to go “decompress?” Ha! I love the people who have decided to continue working for the CF community even though my personal CF community is a coo coo’s nest.