Farewell 2013

I have to admit that I am a little excited to say goodbye to 2013. As far as my health, it has been one of the worst years of my life and for that I am thankful for 2013 to be on its way out. At the same time, the year was full of indescribable magic watching my baby turn into a free thinking, independent, often bossy toddler!

Whether 2013 was the best or the worst year (or somewhere in between) I hope that 2014 is significantly better for all my Cysters, Fibros and their families. I also hope for some new health benefiting drugs for all of us in 2014 since we all know we could use them!!

Have a safe and healthy(ish?) New Year!!

Winter Weight

Uhhh so somehow I managed to lose weight over this holiday season. Seriously? Who does that? After indulging in all the winter treats, holiday feasts, and fatty egg nog I somehow lost weight! Only a CFer could manage to lose weight when the rest of the country can no longer button their pants.

Port Surgery Part 2

I have been dragging my feet with writing this post, but I really want to get it down on paper. After deciding on getting my port I read a lot of blogs about port surgery, but most of the bloggers were cancer patients and most of them were completely sedated for the surgery. My two biggest concerns were not answered: what was it like to have surgery while awake (but loopy) and what would airway clearance be like post surgery?

Part One can be found here.

I was wheeled into the operating room and the nurses were talking to me while they strapped me down to the table. They put something in my IV line to make me sleepy, but as the moments went by and I was still chatting away, one of the nurses looked at me and said, "That did absolutely nothing for you, did it?" Realizing I was not in the least bit sleepy they gave me a little (or a lot?) more. The nurse told me not to fight the sleepiness and the next thing I knew I was out. I remember being awake for parts, but I think I was going in and out of consciousness. At one point I remember the doctor saying she had created the pocket for the port. I also remember being shoved pretty forcefully back and forth. I am not exactly sure why (I don't think I want to know) and am not sure if these feelings were exaggerated by my loopiness. I told them at one point that it hurt a lot. I am not sure if they gave me more sedative, but I remember nothing after telling them of the pain. I will say despite being pushed around and in pain I was 100% content. Even though I felt pain it really didn't bother me and my telling them was more informative rather than out of concern. I am pretty sure they could have said, "Suck it up, wimp!" and I would have gladly said, "Okay." So all of my fears of being scared or worried while in surgery were wasted energy.

I woke up towards the end of surgery and remember being wheeled into recovery. I also remember them telling me my PICC was coming out and watching the nurse pull the line. After that I have no memory until I got home. I have no recollection of leaving the hospital or the drive home at all which still weirds me out.

Recovery was better and worse than I anticipated. I was in more pain than I expected. Laying on my side hurt and certain movements hurt. However, my airway clearance did not cause any pain at all (although I did avoid the Vest).

I have had the port for over a month now and it is actually a huge relief to have it put in. The process of getting a PICC placed with my scarred veins and all the complications that came along with the PICC should (hopefully) be a thing of the past and next time I want IVs one small prick should do the trick. I sure can't complain about that! Now the whole skin allergy aspect is a whole different story..

18 Months

Dear KK,
You are one and a half today! I can't believe how much my life is continuously changing with you! My favorite part about this age is that a few days after turning 17 months you started saying, "I love you!" I never thought my heart could grow bigger for you, but it did!
You also potty trained a few days after turning 17 months as well, but I still don't know how to navigate out of the house adventure without diapers and you are not night time potty trained so you still get to wear diapers.

Things You Like: Oh, little one you love life so much, but more than anything you love your Papa and baby cousin who you call Roo. I think Sunday is your favorite day of the week because you get to see your two favorite people! You also love playing pretend, doing anything art related, and helping me bake.

Things You Dislike: You are able to talk a lot, but you also know words that we aren't sure of the meaning. You get really frustrated trying to tell me things that i can't understand. You will come up to me and say something like, "Mama, laloo." While I am racking my brain wondering what the heck that means you keep repeating it over and over, louder and louder. It can get frustrating for both of us!

What I Like About This Age: Our days are full of coversations. Yes, they are simple, but it is so fun to hear what is on your mind. Some of our conversations are as follows.

K: Mama, agua!
M: Yes, this is mama's aqua.
K: KK agua!
M: You're right that is Kaylee's aqua.

K: Dada lights on
M: Yes, dada put the Christmas lights up and turned them on.
K: Yesh, dada lights on!

K: (chanting) KK, baby Rooooo, KK, baby ROOO

New Words: I can't keep track anymore as you seriously must know 30 or more. 

Hola, Hola, Hola

I plan on bringing you Part 2 of my port surgery, but I wanted to share the "joys" of chatterbox toddler.

In Spanish class Kay is learning this song that basically goes, "Hola, hola, hola, (insert animal name here). It is then followed by a little sentence about that animal. For example, the duck waggles his bottom. Anyway, I was walking Kaylee to the park in her stroller yesterday (so we could crunch leaves) and she started singing her song. I loved listening to her little voice singing out for the world to hear until I realized she completely changed the lyrics...

Hola, hola, hola, boob boobs
hola, hola, hola, boob boobs!

Yes, she sang hello to boob boobs for our entire walk to the park. They don't warn you about this stuff when they advocate breastfeeding!!

Port Surgery Part 1

My port surgery was scheduled for Wednesday morning at 10:00. It was the only time they had available and although I was glad it was in the morning I was really nervous about fasting that long! As a cyster I am used to eating a big breakfast and knowing how slow hospital are I figured I would not be in surgery until lunch time which meant I would be desperately hungry!

Luckily, chasing a 16 month old kept me busy enough that I wasn't able to get too nervous about the upcoming procedure. Around 9:30 my mom showed up to watch Kaylee and my husband and I headed over to the hospital where my dad met us in the waiting room. Unfortunately (or fortunately??) I am very familiar with the waiting room since I get my PICCs in radiology so I have spent a little too much time in those worn out chairs. However, today was the first time that I walked into an empty waiting room! I thought that maybe, for once, things would move quickly and everyone would be on time. I should have known better, when has a hospital ever been on time?

I was brought into pre-op and quickly realized I have spent too much time in radiology because every single nurse already knew me, knew I had CF, and knew I was a hard PICC placement. And when the radiologist came out to talk to me about the procedure, she knew me as well! In fact, she placed my last PICC and even remembered our conversation during my PICC placement.

Soon after being brought back they were getting ready to hook up my IV. Since I already had a PICC they decided to use that instead of starting a new IV which oddly enough was such a huge relief. I don't mind needles, but if you don't have to be stabbed, why would you? It also made me feel, despite not actually using my PICC, the daily dressing changes, lack of showering, and the obscene amount of gauze wrapped around my arm for the last week was actually kinda worth it...or maybe not. They gave me a dose of antibiotics (preventative in case bacteria found its way in during surgery) and explained the procedure to me. I then waited and waited and waited (shocker, right?).

I was asked by several nurses if laying flat was a problem for my lungs (which luckily it is not an issue at all for me), if I had ever been intubated (eek, no!), and how my lungs handle being put under (who knows??). They were clearly being cautious about my CF which started to make me nervous. I really had no idea how my lungs would react since the last time I was put under I was 14 and was significantly healthier than I am today. My oxygen levels were fine and the radiologist said I was moving air nicely so I figured all would be well. Right?

After waiting an obscene amount of time they finally wheeled me into the operating room...

Calming The PICC Reaction

Start here to follow my most recent PICC dilemma.

So the nurses and I are looking at my angry arm and trying to figure out what to do. At this point I had only received 2 days of IV antibiotics (I had the PICC one day before my IVs arrived) and I had 12 days of IVs left. We knew that if this reaction progressed like the last PICC I would never make it the 12 days. I felt like I was in the same position of deciding between the health of my lungs and the health of my arm. 

My dad, knowing how bad my PICC line reactions get, was researching without my knowing. He has access to a lot of medical journals and studies that the average public doesn't so he put it to good use. He found a few articles and brought them up to my PICC nurse. (You are never too old to be "rescued" by your dad). At the same time I begged for steroids- topical or oral. We followed the protocol my dad had researched and the doctor prescribed a topical steroid. 

We cleansed my arm with sterile saline and used alcohol only on my line and insertion site as to not irritate my skin anymore than it already was. We then covered the skin around my insertion site with topical steroid (with sterile q-tips while making sure not to contaminate the steroid cream which was also sterile). We used steri strips to hold the PICC in place despite the fact that they irritate my skin, but I needed something holding the PICC in. They then covered my arm with (sterile) Vaseline gauze because the regular gauze was sticking to my blisters causing the skin to tear off with each dressing change. We then covered my arm with sterile gauze and finished with coban. 

Within a few days my arm started to improve which was a wonderful change from last time when each dressing changed revealed a more damaged and angry arm. I actually started to get hopeful that I would complete the course of IVs without further complications to my arm which was a huge relief. The problem was that they needed me to come to the hospital for a dressing change daily. This proved to be a difficult task. They were open 9am-3pm and I needed to find childcare for Kaylee for my appointments. Since most people I know work finding someone to watch Kaylee for the 1 1/2 hours it took to go to the hospital was beyond stressful. Kaylee also learned quickly that I had to leave her everyday and she protested by becoming clingy and crying hysterically when I would leave which made it even harder to find someone to watch her. 

Somehow we made it work and I got through my 2 weeks of IVs (although I was allergic to Vancomycin and spent the second week covered in hives). Unfortunately at the end of my 2 weeks I caught a nasty cold which filled my lungs with mucus all over again. I did not feel as bad as pre-IVs, but I did not feel nearly as good as I should coming off of IVs. I was beyond frustrated and tried of being sick! 

I begrudgedly called my doc and asked for more meds and a Port. He gave me orals, and to my dismay told me to keep my PICC until my port was placed which meant more dressing changes and more time away from my daughter. They did change my daily changes to every 3 days since my PICC was not being used and my skin had healed relatively well. 

Nothing is easy when it comes to me, that is for sure!!