Tuesday, January 9, 2018

HOSPITAL RECAP


I went into the hospital Nov 6 - 21 due to recording a lung function of 35% on my testing. I have not ever experienced a result that low and needless to say scared the 💩 out of both Ric and I. We knew I needed to be admitted and start treatment. I had a pretty solid stay, nothing too out of the ordinary -- oh, yeah, except that blood clot, that echocardiogram and the hemoptysis.

I am continuing to throw clots each time a PICC line is placed. It is really uncertain the reason why. They have ran every blood test and clotting test imaginable and each comes back 'normal or negative'.

We ran an echocardiogram to look at the pressures of my heart. With pulmonary disease, once your lungs start failing this causes your heart to work harder to pump what little oxygenated blood there is throughout your body. This can elevate the pressures in your heart and slow down the flow of the blood movement through the heart. Speculation was that this is where my disease was headed and that the clots might be developing in my heart all along. Concerned that the 'shortness of breath' I have been experiencing was due to pulmonary embolisms and not just CF - as we had previously assumed. Thinking about this brought my nerves out, but nevertheless -- once again, normal. A true relief this time. This allows us to believe, my body has a quick and strong response to the "trauma" associated with the PICC line placement and that the formation of a clot is how my body responds to the negative stimulus.

I had my largest episode of hemoptysis ever. I freaked my nurse out - now, it's kinda funny thinking of his reaction. Hindsight, ya know. If you don't know what hemoptysis is, look it up. I don't like typing it - it freaks me out.

I ended up having to stay an extra day, making my admission 15 days, but I was still out in time for Thanksgiving. Yay! It was great to spend the holidays with my in-laws who travelled to AZ from all over the states.


 I was out of the hospital for 11 days and then returned for an admission. Normally this would be highly disheartening, however we were in good spirits because this admission was to prep my lung to undergo anesthesia for a surgery I'd be having in 7 days. The ENT Team was nervous about putting me under; with the current low lung function, and they wanted to make sure I was as prepped, and clear from infection/sputum buildup as possible - to ensure success for my lungs. Plan was to remain in the hospital after for another seven days post. This was no problem to me, until I looked at the calendar and realized I'd be in over Christmas. Man 😕 This post can't go any further, without me thanking the sweetest 6 year old boy Owen, who when he found out I would be in the hospital over Christmas was devastated himself. He gathered all the colorful Christmas lights set up in his bedroom and brought them to me. He said "to hang on the wall and create a Christmas tree." This lit up tree brought such happiness, joy and light not only to me but also the employees who came in to provide care. Many stopped, paused, reflected and/or commented when it would catch their eye. Thank you Owen for being a light to others from far away. You are far more mature and in tune than you know, you made the holidays better; for so many. 

Week prior to surgery consisted of lots of hanging out and book reading. We had our first 'Sherman Army Live Q&A' (#SAQandA). Thanks to everyone who tuned in! DM a question anytime, more Live Q&A's are in the works.

Surgery on my sinuses and deviated septum went well. They relieved a lot of congestion and blockage in each of my sinus cavities. This should help alleviate my headaches, reduce my nose blowing, as well as hopefully decrease my quick recurrent lung infections from post nasal drip. Recovery was going well, painful but well, and they told me I'd get an early release -- I'd be home for Christmas! Oh how this made my Mama heart happy. I had been having a hard time being happy, when I knew I would be spending the holidays away from my 2 year old. It just didn't seem fair to him. How I was dealing with it was maintaining the mindset that he didn't understand a calendar yet, and would be okay celebrating on any given day.

The morning following my good news, and after packing up some of the stuff from my room, our CF doc rounded and broke the news that I had cultured a different bacteria from my sinuses. They wanted to aggressively treat this infections in hopes that it would help me have a smoother six months rather than the rough six months previous. They would also be doing a 15 day course of IV antibiotics - requiring me to stay inpatient and restart my "clock". I would be in over Christmas. I would be in over New Years. I was devastated.  I took my time to cry, and then realized the only thing I could change about this situation was my attitude. Sure I'd be missing this Christmas, but really, we take action now to hopefully have a brighter future. We are planning for Christmases 5 years from now.


I could sit and pity or I could look for the positive and create change myself.
I then asked Ric to bring aallll our Christmas stuff to the hospital- we WOULD celebrate on Christmas Day and we would celebrate in style. We had a beautiful Christmas morning with presents and Santa came to hand deliver Hawke his toy! How lucky is that kid?! We were so grateful that Grandma and Grandpa could be with us during this time and make the "magic" a reality. Being in the hospital during Christmas was very humbling. I felt much of Jesus Christ's love as I reflected on him and his birth. I slightly hoped he would come again and heal all those in the hospital -- maybe it really would be my lucky day 😉.

Staying longer in the hospital ended up being a tender mercy; several days post surgery I dislodged a clot from my sinuses which resulted in a severe nose blind (think mild hemorrhage). Because I was in-patient they were able to have the ENT doctors come to my room quickly and take care of this. I bled for six hours. It was aggressively coming out my nose as well as my mouth. (Sorry for the graphics, but hey the medical life ain't always pretty, but it sure is adventurous!) I narrowly missed going back to the operating room and cauterizing the bleed. They put packing up my nose (think tampon), and inflated it with air to create a type of pressure dressing. This slowed and eventually stopped the bleed. This "device" called the rhino rocket, earned a nickname in our room as 'T'mera the Tampon' or 'The Wonder Dam'. She was with me for 7 days and then was removed. I hate to think what would have happened if this incident had occurred at home, I don't think we would have been able to make the 2.5 hour drive back to our CF Clinic and would have ended up at a hospital that didn't treat CF or know my body. Again, grateful we were there.





 At the end of my stay I had to undergo a debridement of my sinuses to remove clotting/crusting that would hinder a proper healing. During this time we reaffirmed the sinus surgery was successful, but realized my septum surgery and removal of scar tissue in my nares was not. I will go back in three weeks for slicing and removal of the scar tissue. This will be an outpatient procedure with only topical numbing. Send good vibes, I hope to not pass out! I've yet to pass out from pain, but I saw the scar tissue on video and it definitely made me queasy thinking of getting that taken care of while awake. My deviated septum will need to be fixed again with surgery. When? This will be determined at a later date. I remember a specific moment in the hospital when Hawke bumped my nose and I ..cringed.. followed by the sentence, "if we have to redo my sinus surgery it is from this moment right here." Thanks to my son, I am now practicing my patience and remembering that I love him despite all things. 😆

I couldn't close this post without saying a  THANK YOU to each and everyone of my family, friends (3D and from social media) who sent Christmas Cards to help brighten my room. This holiday cheer was so fun when I would receive a mail delivery! I love, love loved hearing from you. To look at your photos, read and be inspired by your stories/letters/notes. I am grateful for your thoughtfulness and taking the time/making the effort to make my holiday brighter.

Those of you that work in the healthcare field during the holidays, thank you. My heart is overflowing and so big for you. Sacrificing your time with your family to care for those who aren't with theirs. Yes, I know you get paid, and probably a little more than usual, but still. Thank you. You efforts are noted and gratefully respected and appreciated.

I was finally released after spending 25 straight days in the same hospital room and 6 out of the last 8 weeks in the hospital.

Nov 6 - 21
December 11 - January 4
What I thought was 39 days, I actually recounted and made it to 40 days in.





Here's to the New Year and resolutions of staying out the hospital!

Xx, M




Monday, December 18, 2017

A BIT ABOUT MY BIRTH



When I was born how did they know I had CF?  My birth story is a little bit crazy & rather lengthy so in a condensed version....I was born with 'meconoum ileus'- I did not pass the black tar-like poop. In fact I did not have any type of bowel movement for over a week. As you can see in the photo, I was born with a swollen stomach and frail, tiny limbs. I also had the tube in my mouth to suck out all fluids from my stomach until I had a movement (they didn't want anything else getting backed up in my intestines). I had an IV in to keep me hydrated. I was moved to the ICU for a week & eventually had my movement. I refused to eat & a feeding tube was placed in my nose so I could get the necessary nutrients. I was then moved to a different level of critical care for another week. Every test in the book was being run but they all were coming back negative or normal. Everybody was baffled because they couldn't figure out what was wrong. The doctors had told my parents I wasn't going to live past the first few days, but I was still here so I must be a fighter! They had no idea who they were dealing with. ;) One day my Ma was holding me & kissed my cheek, "Oh, that tasted salty!" She said in passing & to no one in particular. One of the blessed, angel nurses with bionic ears, overheard my Mom & asked her to repeat what she had just said. The nurse went & grabbed my Dr. and told him they needed to run a "sweat test" on me. (One of the two tests that determine cystic fibrosis). They immediately began treating me as if I had CF. I started to improve & began to stabilize. At six weeks the "sweat test" was run, came back positive & I was officially diagnosed with cystic fibrosis.



How did I get CF? It's a genetic mutation...too bad it doesn't give me super powers like the x-men. One mutation must come from the Mother & the Father. Many people carry this gene mutation unknowingly. My parents did not know they were carriers until I was born. I will always pass the CF gene to my children & they will all be carriers of the CF gene. If Ric does NOT carry the CF gene, NONE of our kids will have the disease, but all of them will be carriers. If Ric IS a carrier of the CF gene, then there is a 75% chance our kids will have Cystic Fibrosis. Either way, we will be happy.  Yes, we all hope for & pray for healthy babies BUT if ours do have CF it's okay. I've had a beautiful, blessed life that has included CF. Living with CF has taught me SO many life lessons at an early age & some lessons that I simply may never have learned without this experience. God knows what he is doing, even if we don't quite understand it. 

XX, M

Friday, December 8, 2017

I FOUND A LITTLE GEM


The Gem Studio - it's the smallest little treasure, with the very biggest heart.

Located in Provo, UT they reach far beyond those boundaries. I was seriously stoked when I found out about them. I flew up from Arizona (no, I wan't paid) to get behind what they were doing and participate.




Mat is a man with heart. A heart of gold, a heart of compassion. His compassion began years ago when he worked doing wilderness therapy and outdoor behavioral care, at the non-profit Anasazi Foundation. His love of Native Americans, their jewelry, and culture quickly followed.

Mat began making his own turquoise jewelry during college. Word spread of his skills and intrigued others to stop by and see what he was doing. He began teaching the art of silversmithing - on his bedroom floor - to friends, neighbors and strangers alike. Fast forward and the idea of The Gem Studio, became more than an idea. As his first project in construction HE renovated an old grungy garage, and, turned it into a beautiful, quaint silversmithing studio.

Keeping up with his charitable reputation, three years ago Mat founded and built an orphanage in Uganda. He teaches people how to save money and start small businesses.  To practice what he preaches; profits from The Gem Studio go to the orphanage to fund the classes, uniforms, supplies, water, food, etcetera. How inspiring is The Gem Studio mantra; "Learn a skill  //  Build an orphanage." 

Click here to see the video



ANYWAY, I had a GNO with my friend Lexi, and we spent the evening crafting our rings with Mat. Not only did WE have a fun time, Mat and Jake are awesome instructors and totally make you feel 100% capable of doing an extreme DIY on your first try. They are there to guide every step & answer each question (or 1,000 questions 😜). They really want YOU to do it all and feel proud. I'd be lying if I said I didn't walk out with a big grin and giving myself a pat on the back --  if you know me, you KNOW I ain't no 'Pinterest Mom' or crafter. I've always thought, 'why make it, if I can buy it?' 
But this, THIS, is so different. I had the time of my life.


I created a silver ring with turquoise stone, while Lexi crafted a brass with turquoise.





Ladies schedule this for your next GNO, or birthday bash. I also couldn't help thinking how fun this would be for a bachelorette party, or a bonding experience with your sibling, in-laws, or that new friend you met.

Men, this isn't just for women. I saw some dope men's rings constructed, and Ric's response when I came home, "That's sick! I want to go make something." This is the perfect date night for that special someone you've been wanting to impress. If a ring ain't yo thang -- make yourself a hip bolo tie or duplicate Ric's idea; make a belt buckle 😎 ....maybe I really should have taken Ric for our date night?


DM @the.gemstudio on instagram to book a slot and enjoy the process of creativity during your intimate 'custom ring making session'.






Xx, M




SITE DESIGN BY RYLEE BLAKE DESIGNS