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!  

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.

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.  

Here is the hard working pulmonologist who helps our

kids survive, while also surviving our kids, and watching

me catch balls of poop. Sounds like a country song.

We obtained some new CF specific literature for kids today! Cute stuff!

Informative too!

This is what it looks like to have a 3 hour and 40 minute long

doctors appointment for 4 kids.

My favorite APP is Jiggity because I feel like puzzles

makes it less like screen time. See how I fooled myself there?

Here is our buddy Oreo who has taken his

g-tube and rocked it like a champion. Oh and he was

thrilled to STILL be the screen saver on all the

hospital computers! He is very happy about that, you know being famous and all!

Did I mention that I neglected to bring my baby shoes to the

hospital. Yep. Gross huh? Crazy morning and we got all the

"treatments" done so I can feel good about that. Luckily although

they do not sell children's shoes at the hospital gift shop they do sell

expensive puppy dog socks so at least her feet weren't bare

on the hospital floors.

When The Fairy Godmother Came To The Gas Station

Two years ago today we were feeling very loaded down and heavy as we pulled into the gas station. We were getting ready to drive to the hospital for Orson's g-tube surgery. He had been fasting since the night before and while it was fun at first to "get the day off from eating breakfast," he was realizing it only meant he was hungry. Trying to convince a three year old that being hungry is necessary was proving difficult.

I was 7 months pregnant with my 4^th child and I was trying to hold it together as much as Orson was. Daddy the gas pumper was doing his best to be cheery too. We were each existing moment to moment assuring each other things were GREAT when really all of us were on the edge of breaking down. Lot of emotions, guilt at feeling like failures at feeding our kid properly, guilt that he would have a piece of plastic installed to fix our failure and it would scar him for earth, etc. Then what may as well have been a golden carriage pulled up on the other side of our gas pump.

Out stepped Orson’s fairy godmother disguised as one of our neighbors and friend. She gathered up her sparkling flowing gown and before she could even start singing she knew just what Orson would need that day. With a wave of her wand she assured us she would make this day better.

A couple of hours later after the surgery was over and the breakdowns had all happened there it was. A stuffed to the brim brown paper sack that had been delivered to our house from Orson’s Fairy Godmother and then brought to the hospital by Orson’s Fairy Grandmother (BeBe). Inside was a note explaining that the next couple of days was going to be rough but when things got tough for Orson he could pull something out of the bag to help distract him and cheer him up. Of course there was plenty to share with the older brother and sister who would be watching and hoping for a piece of that prize in the sack as well. Heavenly Father knew that we needed Orson’s Fairy Godmother at the gas station that morning! He sent her to help us just when we needed her magic.

This memory whopped me in the head (perhaps reverberations of the magic wand waived there for us years before) this morning as I put my car in park in front of the same gas pump two years later. We’ve learned so much about Orson’s g-tube in these past two years! His litter sister even thinks she has one and tries to squirt syringes into her stomach every night when we hook Orson up. He was about 32 pounds when he started and if all goes as planned next week when we go in to weigh in on the scales that count at the hospital he should be about 44 pounds. I’m pretty sure that fireworks and a marching band will begin to play if that’s the case. He has gone from the 13^th percentile on the CF growth chart to (since we last checked on February 13^th clinic visit) the 47^th percentile (almost out of the DANGER zone, AKA below 50^th percentile). I am definitely grateful he has his g-tube and that he has the long term benefits of growing properly now to benefit the health of his lungs long term.  

A Great Trip That Ended With a Gunman, a Dripping Baby, and a Dozen Donuts

We had just gotten back from a trip. I helped my husband carry all of our luggage into the house for it to then explode along with the kids two feet from the front door. I got the baby straight upstairs for a bath.

While I’m running the water for the bath and can hear nothing else but water filling a bathtub there are gunshots outside. Frank hears the shots fired and his natural reaction is to walk outside. Picturing our roles reversed I would have double locked the doors and have been moving furniture in front of the door for good measure, but chalk it up to male vs. female emergency response triggers I guess. ANYWAY, so Frank is a walking back into the house and all of a sudden a barefoot man comes running at him yelling. Frank moves back quickly and inside the metal security screen door while the man is yelling at Frank to help him.

Gunman: “Help me, help me, they shot my friend and they are after me! Let me in so I can hide!”

Frank: “What? I can’t help you! You might have a gun!?!”

Gunman: “I do have a gun!” (Gunman then holds up his pistol to show Frank). “I’ll leave the gun outside!” (Gunman then tosses gun into the flowerpot by our front door). “Please, please, let me in. I think they shot my friend! I think my friend is dead!”

Frank: “OK but we are calling the police.”

Gunman: “Yes, yes, please call the police!”

So back upstairs I have not finished running the water yet but my oldest kid comes in and screams at me that “Dad just let a guy with a gun in our house Mom!” Which of course causes me to triple take my listening comprehension skills. My quick breath panic mode takes over as I carry the dripping baby to the top of the stairs to find my two sons huddled together noticeably shaking.

My ears are straining to hear what Frank and the definite voice of a stranger are saying to each other. Are they angry? Are they struggling? Should I lock the kids in my bedroom and use the landline to call the cops? Is my portable house phone charged? WHO AM I KIDDING ITS NEVER CHARGED! WHAT AM I GOING TO DO? WHERE DID I PUT MY CELL PHONE? IS IT DOWNSTAIRS WITH THE GUY WITH A GUN?  Then I have two seconds of super slow motion thinking and all my questions are answered, not by Frank but by a quiet calm to my heart and clear understanding.

No, Frank is not arguing with the stranger. No, we are not in danger. Frank is helping someone who needed help. We are safe. I knew. I was given a reassurance by the Comforter just as Frank was when he let that man in our house (we would soon discuss together later that night) that we were in no danger.

My next step was to make sure there wasn’t anything I needed to do to help Frank and then to get my exhausted children to bed. I went downstairs to get the babies bottle ready for her. I walked passed the pacing frantic man who said, “I’m really sorry about this mam.” I wasn’t sure what to say back so I asked him if he wanted water or a donut (of course we had donuts we just got back from a trip of course we picked up a dozen donuts on the way home from the airport – what kind of parents do you think we are? The kind who don’t feed their kids donuts – WRONG).

The stranger assured me he didn’t want either of those things right before Frank passed him the phone to begin talking to the police.

I went back upstairs to find all three of my big kids (the baby was in my arms still) huddled on the stairs with huge eyes and tears streaming. I guaranteed them that everything was going to be fine and that they needed to proceed getting ready for bed like normal. They then assured me that there was no way that they would take a shower without me standing in the bathroom with them while there was some nut downstairs with a gun by the front door. This seemed a fair enough request so I sat in the doorway of the bathroom feeding the baby her bottle while each of my three kids progressively took showers.

By the time they were done so was the phone call with the police. Also the stranger with a gun by the front door had finished his phone call on Frank’s phone and made several calls on his own phone then stood up and announced that he guessed “the coast is clear.” He began to walk away from our house and then turned back and said, “woops almost forgot this” and reached down into the flower pot to get his gun.

Frank then utilized all the locking apparatuses on our doors and joined us upstairs to get the kids all bedded and calmed down from the crazy turn of end-of-travel events.

As Frank and I went over and over the nights details with each other that night and since, we both keep coming back to the fact that we are so grateful for the Holy Ghost that helped both of us know what to do in such chaotic moments. “As we strive to stay on the path that leads to eternal life, the Holy Ghost can guide us in our decisions and protect us from physical and spiritual danger” – (link to quote and more explanation of the Holy Ghost here). I’m grateful for the Gift of the Holy Ghost.

We haven’t yet taken the advice of some friends which is for me to make a decorative sign to hang above the flower pot which reads, “drop firearms here,” but maybe we will eventually.  

I'd Recognize That Mustache Anywhere

Our first Great Strides Team MAMA Lou

walk 2008, the whole team!

Before our chapter of the Cystic Fibrosis Foundation changed the Cystic Fibrosis Great Strides walk to Sunday we were able to participate and did so in 2008 and 2009. It was our first experience besides visiting the CF clinic in the hospital in regards to guaranteed being around others with Cystic Fibrosis.

Baby Maelee with Frank Daddy before the

Great Strides walk in 2009

When your first diagnosed one of the bullet points in the “so your kid has CF” speech is a pretty serious run down on why your CF kid can’t EVER EVER EVER be around any other person with CF. It leaves you feeling sad and kind of like other CF people are similar to the boogie man. RUN AWAY and DON’T TURN BACK! Of course the precaution is 100% health related, but it feels really strange to be warned not be around people who are your people.

So for the two years we were able to walk in the Great Strides walk they let all the participants with CF know that to allow the precaution to stay in place, avoiding others with CF, that the CF Foundation would provide camouflage visors for people with CF to wear. This would allow the CF human beings to avoid each other with discretion. 

Me in 2009 pregnant with Charles around walk time

notice huge pregnant belly below in group shot is partially hidden

from view.

In 2008 and 2009 our CF child was a tiny kid so there was no way she would keep her visor on. The first year I think I tried to somehow attach the camo visor to her stroller but it was a fail. So I spent the whole time at both walks darting my eyes around for other camouflage visor wearers ready at any second to scoop up my daughter and go running far away so we wouldn’t get their boogie man germs (I definitely know other people with CF aren’t the boogie man so hopefully none of my CF friends who read this take offense, I’m just writing how it felt to me in early diagnosis - not the medical science behind bacterial colonization in the airways).

This is our 2009 Team MAMA Lou Great Strides crew.

Notice my baby Chuck still in my belly. Almost done

cooking.

Anyway fast forward about 9 years to last weeks baseball game for my son Chuck, our only non CF kid. I’m watching his game with my baby Ruby in the grass behind the dugout. I look over and see a face of a woman I recognize as another CF mom that I know from social media only. We share similar friends and follow each other. Anyway I pull up her account really quick to make sure its her then I come up with my plan on how to introduce myself without her feeling like I did at the Great Strides walk about the other camo visor wearers.

I totally play it cool the whole first inning and then when my son is up to bat I casually stand up and cheer for him then I’m like, “Oh hi social media CF mom friend its me, Kamarah.” We exchange pleasantries and I sit there for the rest of the game thinking how small of a world it is, "after all" (so they say).

Then as I take a backward glance at the sweet couple sitting behind us in the grass behind the dugout I notice a familiar mustache. My cosmetologist heart never forgets a mustache. I remember that I met that mustache and his wife two years ago at our fundraising event. The couple had approached me and we had visited about how they had two children with CF but they had passed away. It was a special moment from two years ago that I hadn’t forgotten.

Being my father’s daughter I could NOT pass up an opportunity to tell someone I remembered who they were, so as we were packing up I spoke to the woman. As unweirdly as I could I asked her if she had two children with CF. She said she did and I told her I recognized her husbands mustache from an event two years agoI'd when we had met. She says “people always recognize his mustache.” In my humble opinion, it’s a spectacular mustache and I think it’s pretty cool that people know him by it. Again we exchanged pleasantries and left for home.

I have smiled about it all week. How three CF families end up on the same 10x10 square of grass watching a coach pitch baseball game on a random Thursday night when statistics say there are only 30,000 CF people in all of the USA’s 318 million is beyond me. But even though we aren’t supposed to be together it was nice to land there anyway even if it was just for the unspoken enjoyment of myself at the time. Cheers to chance encounters with the boogie man.

PS – For anyone who is concerned my CF baby and the other CF bigger girl did not get too close, although Ruby was abnormally friendly that night. She must have sensed their sisterhood, I’d like to think so anyway.

This is Ruby last week at the baseball game.

Heavenly Arranged Friendships (Even With Orange-ish Hair)

I wasn’t even born when my mom developed her close friendship to Kathy. But they grew up together as Mom’s with children of similar ages attending church in the same building. Working alongside each other while at the same time realizing they made each other laugh the hardest. It was a magical friendship made strong with enduring trials together and happy memories together too. But what made her really legendary in my eyes was their farewell story of sharing a neighborhood and a church building.

They were both expecting babies at the same time. My mom already had two girls and a boy so she assumed she would be carrying a boy (in the 80’s before common gender ultra sounds). Kathy also was pregnant and assumed she was carrying a boy. They decided that since Kathy was moving out of state that they would cement their friendship in naming their coming baby’s the same name. Cameron.

It turns out I was a girl so my Dad switched some spelling around and added several A’s and a K and WA-LA I had in their eyes the more feminine “Kamarah” and Kathy did name her son “Cameron.” So they still got their bond just a bit different than planned.

I remember Kathy’s visits to our house over the years with great anticipation. She may not have seen my Mom in a year or two but when they got together a natural and easy friendship was theirs waiting every time. We got to skip school to go to the zoo with “Aunt Kathy” and her kids. We went to movies on holidays together. I have a very clear memory of seeing the Home Alone movies 1 and 2 with Kathy and her family during Christmas time in theatres.

To see my Mom so happy with her made me happy and made me want to find my own Kathy someday.

Unbeknownst to me my Kathy knocked on my door one day while I was “big with child” about 10 years ago to the day. She invited me to a girl’s night and the rest is history filled with kid hang outs, double dates, pool days, cheap kid movies in the summer, grilled cheese sandwiches, bean crisps, and our most anticipated event over the years Black Friday shopping. Of course we have also shared the emotional and physical trials as life as well.

Heavenly Father knows just who we need in our lives and I’m so happy I found me a Kathy. Last week I was trying to decide whether or not to attend an out of state funeral for my Dad’s biological mother. I had only met her one time so I felt silly wanting to go, but I also knew that if my Dad were still alive I would be going with him to the funeral. The pull was strong. I knew it would be a challenge to leave in the middle of the week and a LOT crazy to fly in and out in one day. When I let my friend know what I was mulling over she told me that she had no plans for the day of the funeral in question and that she would love to go with me! My jaw dropped! I could not believe it! So we are off this week for a crazy same day in same day out flight to attend a funeral together.

The first pumpkin rolling challenge. Back when I had blondish hair with a lovely orange tint. I've always liked to keep it classy. Don't want anyone to mistake me for perfect you know.  

The second pumpkin rolling challenge with "my Kathy" my hair was not orange anymore so hooray!

These two women got me through so much! We aren't neighbors anymore but what we had when we had it was heavenly.

I have a strong group of fantastic friends who inspire, motivate, and cheer me up! I thank heaven for being given female friends who understand and accept me. I’m grateful for all the Kathy’s in my life.