Saturday, November 23, 2013

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!!

Thursday, November 21, 2013

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...

Monday, November 18, 2013

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!!

Friday, November 15, 2013

PICC Problems...Again!

It is no secret that my skin hates all things PICC related. I have talked about it here, here, here, and here, Oh, and here too! I have a severe allergy to pretty much all the tape they have ever used on my regarding PICCs.

PICCs have always been a huge headache for me and of course this last PICC line was no exception! Before this PICC my docs decided to cover my arm with all the possible tape they can use in a PICC to find out once and for all what I am allergic to. They even discussed my issue with the wound care specialists and the burn care nurses to find alternative tape choices. They also gave me a shot of lidocain and covered a patch of skin with skin protectant just to rule out all the things I could be allergic to. I was excited because once we got the results we would know how to keep my arm from turning into a heinous mess.

3 days passed and I had no reactions, not even one. Which I sort of expected since my reactions usually started several days into my PICC treatment, but it also terrified me. What if this test proved I was allergic to nothing? Then what? Where would we go from there?

By the end of the day my arm was a little itchy under the stat lock. I was instructed to pull off any tape the second I felt a reaction because of how horrendous my reactions get and how quickly they escalate. Sure enough as I pulled the stat lock off my arm the skin was bubbly, covered in puss and beet red underneath. I also noticed a slight reaction to the skin protectant. As far as tape, nothing reacted which was a huge shock for me. I was skeptical, but we decided to try a PICC with one of the "gentle" tapes that I did not react to and we would not use a stat lock, skin protectant, or chloroprep (which I already knew I reacted to).

The PICC was placed and all seemed well....for 3 days. And then, then the skin started to feel a little itchy so I called AIM. It was a Sunday, but they took my right away. Sure enough when they pulled off the gentle tape my skin was fire engine red, covered in puss, bubbly, blistery, a gory mess. We sat there dumbfounded. How did this happen again and what are we supposed to do now??

Thursday, November 14, 2013

My Very Last PICC

Last month I had what I believe will be my very last PICC ever (portacath here I come!). And like all my PICCs this one went in with a fight. This time, I did not have a resident place the PICC and the radiologist did not tell me that I should not be nervous because it makes her nervous. In fact, the radiologist was one of the nicest medical workers I have ever come across. The PICC placement however, was not so nice.

I went directly to radiology to have my PICC placed because the PICC nurses won't touch my arms anymore. After waiting an obscene amount of time, even for a hospital, I was finally brought back for placement. All seemed normal, I was prepped, the lidocain was injected and I felt the usual pressure and the distinctive, "Pop!" sound of the catheter pushing its way through my skin. And then another shot of lidocain which meant the first location didn't take. Rinse, repeat and repeat and repeat...

It felt as if time was dragging on forever, I lost track of the "Pops" and the radiologist was apologetic and so kind for having to poke me so much. I was having vasospasms which is when your veins clamp down because they are stressed out. I figure my body, being poked over and over, assumed I was being attacked and decided to clamp down to prevent blood loss. The problem is I was not being attacked by a bear or killer shark and I was not at risk of losing too much blood, I desperately wanted my veins open so the blood would flow and the wire could find its way to that magic spot above my heart. But my body, confused and misguided buckled down and demanded a fight.

The radiologist noticed that even with lidocain my veins would spasm so she decided to try the last one without lidocain. Luckily, I was partially numb and so over laying on that table I didn't care. Thank goodness the wire went through and we all cheered. At that moment I decided that I would never get a PICC again if I could help it and that I would call my Dr the very next day to schedule a port placement once I was done with IVs.

Too bad my crazy PICC story didn't end there...

Tuesday, November 12, 2013

17 Months

You are 17 whole months today and each month gets more lovely than the next EXCEPT this month. There were a few days I flopped on the couch and said, exasperated, to your father, "I am not having fun as a mommy at the moment." Don't get me wrong because you are my light, my heart, my soul, my life. But this past month was very challenging. The melt downs, the I do it myself when you clearly couldn't attitude. the tantrum, sigh!! Well, little one I really can't complain because I had it so much easier than you did, you got 4 molars all within the same two days and then with almost no break at all you got the top eye teeth. 6 teeth in one month just isn't fair, little bug. So you had every right to pout and whine and be grumpy!

Things You Like: Doing it yourself even when you can't. You want to be independent and grown up so badly. but you still have a ways to go. You want to dress yourself (when you are not on a clothes strike), you want to change your own diaper, you want to buckle your own car seat, wash your own hair, but you really don;t have the capability of doing any of these tings. It makes for slow moving days, but it is pretty cute watching you try to do everything yourself unless we have a deadline. When we have to be somewhere it is really frustrating.

Things You Dislike: You don't like certain strangers coming up to you and being too friendly. You will often decide to become "friends" with strangers (90% of the time it is men), but you want to be the one to choose who talks to you. You aren't necessarily shy because if you "like" someone you are super outgoing, but if the wrong stranger comes to talk you don't appreciate it.

What I Like About This Age: The other day your found a piece of paper on the ground in the living room. You ran up to me to show me what you found. I looked at it and said, "basura" (garbage in Spanish) and went about my business. I hardly noticed you run out of the room, but I absolutely heard the kitchen cabinet open. I decided to spy on you to see what you were up to. You were opening the cabinet where our garbage is and you you were throwing the basura in the basura! I had no idea you even knew what basura meant. You understand so much and you are a great helper. I love asking you to do or get things for me just because I am amazed and how much you understand. 

"Get your gub gubs (shoes)!" You run and get them.
"Can you get my phone?" She does
"Put your clothes in the hamper" She does.

There are little mis-communications though. The other day you were playing with my pot while I prepared the veggies for soup. When I asked for you to bring my pot back you ran from the room went into my bedroom and came back with a pair of my underwear from my dresser. Not so helpful when making soup.

New Words: You know all the animal sounds in Spanish (which are different than English. Who knew a rooster says, "kikiriki!" and not cockadoodledoo) She also says all the names of my immediate family. She is repeating everything now. She doesn't necessarily know what it means, but she has a great ear for repeating words in both English and Spanish. Although, we have noticed she sticks her tongue out a lot more when attempting Spanish words. 

Wednesday, November 6, 2013


Just after my last post my computer bit the dusk. At the same time my husband also had his wisdom teeth out which was about $900.00 out of pocket (because he has crappy teeth and so we used up our insurance allowance). I seriously missed blogging especially since the last month has been very hard on me CF wise. I really needed my blogging outlet as my therapy, but life had other plans. My computer is fixed (for now) and I am so relieved to have my free therapist (my blog) back. Hopefully, I will stick around this time.