Sunday, January 29, 2017

A Friendly Face Can Change Everything!


The three surgical procedures (sinus clean out, adenoid removal, bronchoscopy) that Maelee had done this past week are not uncommon. But to her as a 9 year old girl it is this huge looming thing that we have been anticipating for two months since her first CF “clean out” hospital stay of her life in November. This surgery is an extension of that November hospital stay experience for her. She has heard us explain the reason for the surgery many times at this point, which is to bring up her lung function.

What I see her absorb from all of the talk and build up though is pressure. Pressure on her to get this done and get that test score up up up! Me remembering her extreme self disappointment in the hospital back in November when all her hard work just gave her a few tiny points in the lung function test and then back below where she was and not the huge jump we were all hoping for, wished I could protect her from the burden of pressure and the potential future disappointment (duh of course all parents want it to only be smiles and high fives) of this not being the fix or it taking longer than we guessed to increase.  

Finally though her 5:15 check-in morning arrived. We were blessed as the parents to both be able to be with her and each other on this day (thanks Mom! & thanks Frank’s work!). We walk into the hospital to get started and what do we see first thing? Behind the desk of the check in area on the screen saver wallpaper of the computers is none other than our very own Orson boy. The hospital had asked for the kids to do a media photo shoot early in 2016 (along with several other patients and their families) and some of the photos taken that day have indeed popped up in the hospitals advertising campaign throughout the year. As we moved through all the sections of the hospital on the way to surgery we saw that EVERY computer was set up to have Orson’s face on it (along with the inspiring hospital advertisement of course). We felt immediately at ease to have his sweet happy face staring at us wherever we went.

"HEY THAT'S MY SON"
Dozens of other sweet happy faces of patients could have been used on that screensaver, but we do not think it was a coincidence that it was Orson’s that day. It was a gift for us from Heavenly Father to lighten the mood and help us feel at ease. Maelee and I got a huge kick out of Frank telling hospital employees as he passed them and their computers, “hey that kid on your screen, THAT’S MY SON!” as many times as he could. It was special and it was definitely a gift.

Playing Phase 10 to pass the time.
Wonderful day to be on the 4th floor of the parking garage.
So after we waived goodbye to Maelee as she rolled away in the capable care of amazing Phoenix Children’s Hospital staff into surgery we knew we had three hours to spend waiting. We ate breakfast together. I beat Frank in the first 4 hands of Phase 10. Frank did a mini run on the 4th floor of the parking garage to keep his streak alive. I wrapped up in Maelee’s blanket and watched the construction machinery down below the 4th floor working on the fancy new ED of the hospital.  

Before we knew it we were at Maelee’s bedside watching her start to come out of her surgery nap. The nurse told us that she had swallowed a lot of blood during the surgery and right before we came in her recovery room she had just vomited blood. Whew I thought, I’m glad I wasn’t here for the vomiting of blood I don’t think I would have handled that well!

They got us to her room she would be staying the night in and low and behold it was the same floor she was on back in November. In fact every nurse she had (just three shifts this time) was a nurse she had back in November. She knew them all! Plus Maelee remembered all their names.

As Frank and Maelee both took a post surgery nap together (Maelee, now is at the point where she is being silly from the anesthesia) I stumbled upon something that stopped me in my tracks on my Facebook feed. My friend who has been staying with her son in the hospital since August of 2016 posted some thrilling positive news on her sons journey. I had to re-read it a couple of times because I was reading so fast from my excitement to get to the end I missed a few things. I considered this post worthy of waking Frank up for.It said,

No one sleeps well the night before surgery...
First off I have to start this off by saying that God is good. He is there for us every step of our journey. He knows each one of us personally and will never leave us. It doesn't mean it's going to be easy….”

My friends post goes on to explain some literally miraculous news in her sons disease and her feelings as a mother and of her faith, it made my voice do the cry talk thing as I read it out loud to Frank. Maelee at that point came out of her daze and mumbled, “Oh Mom, don’t cry OK, don’t cry.”

A few minutes later and for the next 5 hours she vomited quite a bit. Blood the first four times and then the food she ate between vomits the last two times. But the tone had been set by my friends powerful testimony, God is good and He will never leave us.

Some examples for me that day of Heavenly Father never leaving us. He kept Maelee calm during all of her barfing. She would grab a hospital vomit bag, throw up blood, and then ask Frank and I to please help her rinse her mouth out and then announce “I feel so much better.” If I ever throw up blood I imagine it will send me into a fetal position panic and hysterical tears, but she was stone cold calm.

Another example of Heavenly Father never leaving us, Maelee had all her nurse friends from November happen to be on shift to help her again during her surgery. A gift. Maelee really loved that she knew them all already.

Another example of Heavenly Father never leaving us, Orson’s face smiling at every single person in the hospital during the time of Maelee’s surgery and short stay. I loved watching Frank be so proud to tell everyone it was his son and then Maelee jumping in that it was her brother.     

It is wonderful to have these procedures done with! We continue to work now and always on strong lungs. Trying for extra vest treatments, extra bike rides, and Maelee’s new favorite extra trampoline jumping. We test again in March to see if there is any jump back to Maelee’s personal lung function high. 

In the mean time, Maelee has noticeably matured emotionally through her health issues these past three months. She has made big improvements in my eyes to be the kind of friend she wants to have and has gained an increase in love and a decrease in judgment of others. It is a wonderful time of life to see our kids work through their challenges and be successful and try their best. I am so grateful that I know that my friend has it right. “God is good. He is there for us every step of our journey. He knows each one of us personally and will never leave us.”

Family selfie before surgery.

Orson smiling at everyone always.

Next day after surgery, almost going home.


One of Maelee's awesome nurses from November and January.

Lovely braids and cheerful ring on the dreaded IV hand.
Transporting Maelee to room with mask on and cool wash cloth for fever. Large stuffed dog from Grandma got to ride too.



Sunday, January 22, 2017

Scary Job Is Confidence Aquired

I have enjoyed thinking about and recording a tiny bit of the Big Deal CF Blessings our family received in 2016. I was going to write that this will be my last post referencing our Big Deal CF Blessings in 2016, but I realize now that all of what I write draws on some piece of the past so I won’t say it’s the last. Instead I will stop numbering them and just happily relate our Big Deal CF Blessings for as long as the mood strikes me.  
Big Deal CF Blessings : Nurse Debbie’s Diagram
There are many times in my life when a blessings snowballs and keeps on giving. Maybe the snowball effect doesn’t happen at first, but some small lesson is learned that benefits me over and over again throughout my life and challenges. This happened during our home IV adventure in November of 2016.
When our pulmonologist gave us the glimmer of hope that our oldest daughters hospital stay could be shortened if we would do home IV’s last year we were so happy. Then when it really happened and the nurses at the hospital did the noon IV and said, “OK the next IV is due at 8pm and you guys will do it at home,” I started sweating. I began to physically feel ill. Surely I could convince the home nurse to just come back and do it for me. She really shouldn’t trust me with this job…..I cut myself all the time in the kitchen! I often screw the water bottle lids on crooked and they leak! Once and a while I can’t outsmart a Capri Sun! Don’t let me do this on my own! I didn’t want to hurt my kid!  
Then at 8pm that night we met Nurse Debbie, a very fantastic IV home nurse. She was a perfect match of personality with my family and didn’t mind the circus surrounding her as she tried to teach my husband and I how to administer home IV’s. During this well-rehearsed (on her part) teaching session she started by drawing us a diagram on paper. She drew out with various shapes representing the different IV meds and process. She explained beautifully how to visually go into the process with all the meds and supplies and if you worked simply from left to right following the diagram you would be successful in administering the IV.
The nurse explained that the next IV would be due at 4am and we would do it alone. She said we could call her if we needed her, but that she was confident in us and our ability to do it (but maybe she didn’t want us calling at 4am, ha, ha, hopefully she DID think we were competent and she wasn’t just exhausted). Before she left she again re-iterated that she KNEW we could do it and figuratively made us get down on one knee and knighted us with her nurse-to-parent-sword-of-confidence.
I was so scared for the first IV on our own. Shaking. Anxiety ridden. In wacked out Mom mode I walked into the girls bedroom with my phone flashlight blaring at 4am, not even thinking about the sleeping 15 month old in the crib next to my oldest daughter. So poor baby Ruby got woken up that first IV morning at 4am and stood up in her crib and watched her Dad and I shakily do the first IV. The great news is though that this scary experience increased our confidence.
Nurse Debbie’s diagram teaching method worked perfectly for my husband and I and it allowed us to double check the diagram when we were on our own to clarify and assure ourselves we had it right. My husband and I began to feel like experts with this IV process. Every morning at 4am an IV was due to be administered so we would go in to Maelee’s bedroom together with all the supplies and one of us would administer the IV and the other would take the garbage (we make a lot of medical garbage at our house) and hand back the many necessary alcohol swabs to keep the site clean during the job. We both could do either job (assisting or administering) equally well and it was a unique bonding experience as husband and wife in working together at 4am. I even had the opportunity to really flex my confidence muscles and do the IV a few 4am’s alone when my husband was out of town.
Debbie’s diagram though that first night stuck with me. It became very apparent that I learn best visually. One day Heavenly Father popped the glorious idea into my head to make a morning med diagram for myself to help me make sure everyone gets all the nitty gritty details of their morning meds. I copied Debbie’s method and drew shapes representing what all needed laid out each morning for each kid. I chose to do one diagram instead of three knowing keeping track of one diagram would be easier for me than three separate. This has become a life saver for me. Before the diagram I would write down their morning meds on paper and follow that, but inevitably loose the paper leaving me just trying to remember from memory. Never fail at some point in the day I would either 100% realize I had forgotten something, or 50% wonder if I had or not. Now I just first thing fill up all the shapes on the diagram and then start passing them out! It’s great and works so well for us!
Even more of a bonus it’s going to allow me to train each of the older kids on filling up the Morning Med’s Diagram so that they are all proficient at it and can help each other, me, and themselves. A BIG step to CF self-sufficiency! Hooray!
And it’s all thanks to the nifty Nurse Debbie and her diagram of IV wonder. The blessing of meeting her and learning visually from her IV diagram is the beginning of a huge blessing snowball.
P.S. – On a specific side note for any CF family readers I also in 2016 found this very handy lazy susan of sorts from Hobby Lobby. Its metal (cleanable), and spins (fun), and SO cute! Now all the meds that I keep on the counter because I access them so much are neatly off the actual counter and easy to find. I love and appreciate this CF tool. This along with hanging our nebs to try on the side of our cabinet with shower caddies has saved my kitchen counters from being always full of medical clutter (necessary of course but clutter non the less).

Sunday, January 15, 2017

Mother to Mother Yes I Can Help This TIme! Hooray!




(Meeting my goal and writing about some Big Deal CF Blessings 2016. Here is #4.)

There are often times in my life that I feel like I need a lot and get a lot of help from others which I am very grateful for. For someone like me who feels super needy and already one of those “special” friends who people cringe when they get a text from its great when once in a while I can be the giver and not the receiver. Something special happened to me at the end of 2016 with another CF mom for that to happen.

A few days before Christmas, I got a Facebook message from another CF Mom that needed me help. Because of some previous conversations we had, she knew that I lived close to her mother’s house. That day my friend had packed up and headed to her Mom’s house to spend Christmas there. She messaged me because in the chaos of packing her Christmas along with the typical circus needing to be packed when taking a kid anywhere overnight she forgot her nebulizer cups for her sons inhaled medication. She had sanitized them and had them drying on her kitchen counter, but accidentally left them behind.

There was no way for her to get the specialized neb cup since it was later in the evening, and ridiculously you need a prescription to get a nebulizer cup. (Really? I need a doctor to give me permission to buy an expensive plastic cup? Whoever repeatedly abused the nebulizer cups and used them inappropriately should really know that I’m super annoyed about this rule). CF meds need to be nebulized at a specific particle size so we can’t just use any old neb cup it needs to be a special brand. Anyway her son was symptomatic and needed treatment without delay and she needed this special neb cup.

I snuck into the kids room and used my phone light to quietly sort through my large and robust medicine armoire and was happily surprised to find a new sealed neb cup waiting to be used to help a friend!

She came over and we had a really great visit. It was a weird moment for me because I don’t get to talk to many CF moms in person. She also happens to be pregnant and doesn’t know yet if her baby will have CF or not. Hey! I’ve been there!

As we got to talking it became so surreal. Standing there talking with her my heart remembered how it felt to be where she is right now, or at least how it was for me to be there…. I wanted to give her a massive hug and a really inspiring win-the-championship kind of speech.

I wanted to tell her that she is so so so brave to have another baby and that I was so proud of her. I wanted to tell her that no matter what, CF or no CF it is infinitely worth it to have that child and grow their family. I wanted to tell her that everyday angels help me to help the kids with their treatments and meds and I know they help her and will continue to help us both. I wanted to tell her that all the details and minutia of Cystic Fibrosis matters to Heavenly Father. I wanted to tell her that she’s doing so great and that as she keeps on trying with her Mother heart each day ideas will come to her to help bless her children and make the never ending treadmill of Cystic Fibrosis runnable.

In the end, we talked a little shop. Stuff like where we keep our neb cups to dry. Sanitization. SVN machines. G-tubes. Labeling neb cups. Amniocentesis. We laughed a little. Stood there for a few seconds and realized that we “got” each other. It was such a special experience for me to have her in my home, even for just a few minutes. I think I may have asked her if I could give her a hug. Maybe I didn’t, can’t remember….but I should have if I didn’t. Being able to serve a friend in a specific CF-mom-kind-of-way was to me another Big Deal CF Blessing of 2016.


Sunday, January 8, 2017

Sorry We Dragged Your Trick or Treating With A Broken Arm Baby Ruby


Big Deal CF Blessings From 2016 #3

I have this awesome nephew who was born on Halloween 9 years ago. We try to Facetime on birthdays since his family lives in Alaska. So we (all four kids and Frank and I) are piled on the couch squeezed into the camera shot of Frank’s phone. The call ends. We all jump off the couch. We really must have all literally jumped off the couch considering the motion of us 5 bodies moving up and off caused Ruby’s smallest of the 6 bodies to fall off the couch. She landed on her right hand.  

Ruby then starts to cry quite hysterically. Of course we comfort her and get her calmed down. She still is a bit fussy and clingy to me (which hey is totally normal) but we give her some Tylenol to be on the safe side. We do notice that she is walking around holding her right arm with her left arm very gingerly.

It’s trick or treat time though so we head out on our adventure and after an hour and a half of getting Ruby in and out of a wagon and a car seat the poor baby girl is exhausted. When she wakes up the next morning and is still holding her right arm with her left I call the pediatrician and get her in right away.

The x-ray shows she broke both the bones in her arm. Thanks to glorious insurance (really with us we can’t ever complain about insurance, since we really get our money’s worth like within 5 days of the start of 2017 we meet our deductible), she gets a fantastic waterproof cast. She really does wear it like a champion for her 6 weeks and even asks for it to be put back on after her arm gets washed in the bathtub every night.

What’s the Big Deal CF Blessing in this then? Well I’ll tell you what it was a great feeling to have a normal crisis on our hands. We didn’t have any uncertainties about lung function, weight gain, throat culture results, blood pressure, or any and all of the medical acronyms you can think of in regards to blood, sweat and tears. Nope, for this doctor’s appointment Cystic Fibrosis wasn’t an issue!

Yes we felt terrible that we dragged her around trick or treating after she broke her arm, but HEY we didn’t know she had yet OK so back off!

All I’m saying is, it was nice for once to not have to delve into the CF history explanations and hope you remembered to say everything that matters so the doctor could make an informed decision. Yes this day baby Ruby got to be just a regular kid with a broken arm and the CF didn’t matter at all. And any day when you can be just a regular adorable little girl with a regular broken arm is a good day. See we are normal…..sometimes.  
Photo from family shoot with Stacy Guthrie amazing photographer and friend.

Tuesday, January 3, 2017

More Time to Play


Big Deal Cystic Fibrosis Blessings from 2016, #1 and #2

What a wild year! We loved it! Had great adventures! Had many opportunities to learn and did learn about our kids and their Cystic Fibrosis. Many things lay ahead for us in 2017 too. We will most likely get Maelee on the Orkambi (#wehopetothanktheinsurance, #likewewerentalreadyanexpensivefamily) drug which is a spanking new med made specifically for our kids mutation of Cystic Fibrosis (#DF508), the others aren’t old enough yet, but she is so we are working on it!

Since one of my 2017 goals is to write more I plan on splitting this 2016 CF blessings post into a few pieces. Since no one likes to read a novellic blog post I’ll keep this post to two Big Deal Cystic Fibrosis blessing for 2016, and plan to end the posts by the end of January 2017.

The first two Big Deal Cystic Fibrosis blessings walk together since the one gave the other its existence.

Imagine this. You have this plastic thing wedged inside of your stomach. It’s held in place with a balloon of air on the inside of your stomach and a plastic valve for ease of use on the outside of your stomach. You use this button to give yourself extra calories directly into your stomach while you sleep since you can’t physically eat enough calories to sustain or gain weight on your own during that day. Are you imagining that?

Now on top of this plastic button that has been installed in your stomach you can’t just use it and cruise it - you have to take medicine for those calories to work right when they get into you while your sleeping. But wait! What? Your sleeping so how are you supposed to take medicine?? You can’t, so you do your best to take some before and after your tube feed. But that is not good enough, your pancreas doesn’t work and you need more enzymes during the feed. The result is pooping in the middle of the night and stomach cramps and pain from inevitable malabsorption of the calories…………….

ENTER NEW INVENTION: DU DA DA DA! Relizorb!
This is a plastic cartridge full of the medicine (pancreatic enzymes you need) that you can attach to your formula tube so that is slowly administers enzymes to you with your calories while you sleep! How fantastic! Really I can’t use enough exclamation marks about how neat it is that this invention is a thing now! Thank you inventor! Thank you for helping g-tube patients around the world! You are my hero you mystery scientist! I hope somehow you get credit for this and your beautiful idea wasn’t taken from you by a big pharmaceutical corporation in some terrible and sad-make-a-move-about-it-someday-way. Thank you with all my mother heart! OK you can stop imagining now.

So one night while we are hooking up Orson to his night feed, Frank and I start talking about how amazing this invention is and what a very specific idea and type of person around the world it is blessing (Cystic Fibrosis and other GI patients who need enzymes while tube feeding). Charles, our only child without Cystic Fibrosis who is already super into science and how stuff works PERKS up when he hears us say the word “invention.”

We then dive into a conversation about how yes, someone thought of this idea, and yes they made it work through lots and lots of hard work and idea sharing until now its blessing lives and helping people.  

Immediately Charles’ wheels start turning and he ends the conversation by announcing that he will someday invent something to help Orson and Maelee and Ruby with their Cystic Fibrosis. See, that is how the second blessing walks with the first. The spectacular cartridge of enzymes for tube feeders, Relizorb, inspired Charles to think of his CF invention. Ready for your mind to explode?

Charles is going to invent a machine that someone with Cystic Fibrosis can hook up to while they sleep. This machine will do all their treatments for them while they are sleeping. All their lung treatments, and some fancy new GI treatments so they won’t have to take enzymes during the day. All of it will be done at night during sleep so that the person can wake up and have to spend no time doing treatments. Then as Charles so very cleverly and sweetly thought of, “Orson will have more time to play with me.” Because that is one of the ways that Cystic Fibrosis effects these best friend brothers, less play time. Which of course to me was the loveliest invention Charles could ever think of.

With Charles’ natural traits of obedience and love of law and order I can see him really being a successful scientist. I believe that Charles could figure this out one day. The motivation is real. I’m so proud of my children!

Orson for all of 2016 (except for Saturdays and some holidays and travel days thrown in) allowed himself to be hooked up, tethered really, to an IV pole to get “medical food” or as we call it “milkshakes” every night. He slept wrapped up in tubing and allowed it to be normal all those nights. He woke up to a loud alarm blaring at him at 1am all of those nights to get unhooked from his machine, use the bathroom, and get himself back to sleep – he’s five years old! Amazing! Charles sleeps feet away from Orson’s rhythmic pump and one AM alarm. Does it disturb him every night? Probably yes. Does he wake up and complain? Never. Amazing!

Yep I am bursting with pride for a son who does this hard thing and I’m proud of another son who has never once complained about helping his brother get through the hard thing. AND on top of it is determined to invent a life improving Cystic Fibrosis invention in his lifetime. Just wait, you’ll see.  

#BigDealCysticFibrosisBlessings2016 #CFIsNotForever #BurstingWithPride

The contraption with the purple lid is Relizorb