MIA

Apparently I've been MIA once again. Quick update:

• IVs are going well. I'm feeling like I have some energy back. 
• I have discovered that I'm allergic to chloraprep (antiseptic skin cleanser) and/or tegaderm (adhesive). Remember how I said I dread dressing changes? Well, I knew something was wrong when I was looking forward to them, knowing that peeling the adhesive off my skin would relieve the itching more than it would be painful. Isopropyl alcohol for sanitizing and IV 3000 bandage seem to have done the trick.
• We went on a "ski" trip to North Carolina. I lounged at the cabin with the kiddos instead of skiing, though we did do some snow tubing on our last day.
• My sinus surgery went well. In fact, if it weren't for the bleeding, I might think they hadn't done anything to me. I've hardly needed pain meds. I mostly feel tired and congested, but that's to be expected.
• Family is arriving today (Laura and Robin) and tomorrow (my mom and dad). I always love having family around, and the extra hands will be nice while I continue to rest.
• CF follow-up appointment is tomorrow. Though I have been feeling better, I'm afraid it won't go well just because I'm still in recovery from the surgery. Prayers for good results, please. :)

Curious?

Because I have done this a few times, and have a sister who has as well, I kind of forget that not everyone knows how home IVs work. I've had several people who seem genuinely curious about the process. So, for those who are interested, and not squeamish, I thought I'd kind of detail what the process is like and how it all works.

First is the insertion of the PICC- a peripherally inserted central catheter. The PICC is a type of semi-permanent IV line so I don't have to have a needle stuck in the back of my hand for two weeks. The doctor this time around, Eugene, also explained that the amount of antibiotics can be too much for the veins to handle, so the catheter allows the medicines to be delivered directly to a very strong artery just outside the heart. The meds are then immediately pumped throughout my body.

The process of inserting the PICC used to be a lot more simple- a nurse would apply some numbing cream, then insert the catheter into my arm. I'd go for an X-ray afterwards to ensure it was in the correct place. Now it's much more complicated (thus the anxiety leading up to it). The last three times I've had a PICC inserted I was in a surgical radiology room where I laid on an X-ray table. The doctor sterilizes my entire upper arm and preps the area then uses an ultrasound machine to find the best vein. Once he decides on the best location, he then injects lidocaine to numb the area (sometimes I wonder if the "bee sting" pain of the numbing injection is really worth it). A tiny incision is made in my skin (2mm), then a wire is pushed in through the incision and into and through the vein. The doctor takes an X-ray to ensure the wire has followed the correct path to my heart. Then he inserts the catheter- a really thin tube, and removes the wire. He finishes up by securing and "dressing" it. Curious what it looks like? Because I have several friends who are squeamish about these things, I thought I'd give you the option to look, or skip it. Click here if you want to see what the insertion site looks like. If you don't want to see an actual picture, here is a good illustration I found on the internet.

Once the PICC is inserted and ready to use, my prescriptions are called in to a home healthcare pharmacy. A nurse comes to my house, takes vitals, then teaches me how to infuse my medications.

In this case I have two antibiotics to take intravenously. Both are to be taken every 8 hours. One of the medications takes (at least) an hour to infuse. The other takes 30 minutes. If you do the math that means at least an hour and a half of medication and six and a half hours between the doses. Funny how those 6.5 hours seem to be quite lengthy during the day, but far too short at night!

When it's time for a dose of medication, I unscrew the cap from my PICC, and twist in a syringe of saline. I inject the saline to clear the line, then I hook up my first "ball". Unlike in the past when I've had poles and hanging bags, home IVs are now usually done in a small ball that is pressurized. The pressure slowly forces the antibiotics out of the ball and into my body. This allows me a lot more freedom as I can put the ball in my pocket and continue with daily life. I even did it at work!

Saline

The syringe screws right onto the line

Full/Empty infusion ball

Once one medication is finished, I switch to the second, screwing it onto the line as before. Once it's fully infused and the ball is deflated, I inject another syringe of saline to clear the line and ensure all of the medication made it through, then I inject a syringe of heparin which helps prevent the blood from clotting in the line and causing blockages.

It's honestly pretty simple and easy, but there are a few things that get bothersome. The lack of sleep, of course, is frustrating. How can a person get well when they can't get a full uninterrupted 8 hours of sleep? I also hate that I have to have Jason help me before and after every shower- the dressing can't get wet so I wear a rubber sleeve designed to cover PICCs and casts over the site. I can't get the sleeve on or off my upper arm by myself.

Technically you're supposed to suction the extra air out
but the ends are so tight on me I find I don't need to

Stylin'

I also despise the required weekly dressing changes. The bandages over the PICC line have to be changed weekly in order to clean the area and prevent infection (the line goes directly to my heart after all). I hate having the bandages peeled off. I'm also a wimp when it comes to "boo boos" (ask Jason- any time one of the boys is bleeding I make him take a closer look to see how bad it is. I just can't.) and I hate anyone messing with them. Having someone move it around and rub it with alcohol makes me cringe, even if it doesn't hurt. I joked with my nurse this time, as she changed the dressing, that it's funny that I have given birth naturally, but I can't handle the small amount of pain that comes with the dressing changes. She was incredulous, so I told her, "it's different! There's a prize at the end when you're in labor. There is no prize here." Having had two children herself, and having chosen an epidural, she outright disagreed with me. :P

For the time in between doses, I usually put a "sleeve" of some sort over the tubes to keep them from dangling around and getting caught on things. I usually use a nylon-type stocking with the toe cut out, but I've also used an athletic neoprene sleeve of Jason's which works nicely (Jason says Nike calls them "shooting sleeves." You see basketball players wear them.).

June 2008 (when I had my previous sinus surgery)
Not sure if that margarita would have been recommended or not...

The actual placement of the PICC does vary from time to time. Lately it's been a lot higher on my upper inner-arm whereas in the photo above it was closer to the crook of my elbow.

It may not be fun, but I'm thankful to be able to stay at home with my family, away from the hospital and germs. Jason has been ensuring I still get lots of rest, and having Tuesday through Friday off this week due to weather certainly helped with that as well!

An announcement

Earlier this week I posted a link to my most recent post on Facebook:

Which received this comment:

Yup. I can totally see that. Especially with the title "Again" and a picture of a big bag of candy!

My news was quite the opposite of that, and the comment made me go, "wait, they don't know...?"

So here's a little announcement for you that I've been meaning to share for a while...

That photo was taken in June of last year. That's when I had started writing this post. It was right before leaving for our trip to Canada and things were crazy busy so it never got finished and then... I guess I forgot about it and just assumed you all knew.

I know it is not an announcement that needs to be made public, but I have found myself rewording things so as not to cause unnecessary excitement (I obviously missed it this time!), or avoiding pinning cute baby things that I want to pin for fear of raising suspicion.  My original intention was to post this and purposely make it seem like we had exciting news as a way of having a last bit of fun announcing that, from this point onward, if I post/say/write/pin something that makes you wonder, you can go ahead and stop because it ain't happening (or at least the chances are incredibly slim).

At the time I was planning to post this James was only 8 months old (I took the above photos at the same time as doing his monthiversary photos) and our decision was already "permanent" so my original post read as follows: Perhaps you think this is a hasty decision and it's too early to know if we'll want more. Or you worry that it's just the phase we're in and promise us it will get better. Perhaps that's all true, but this is a decision we came to through a lot of thinking and prayer. In fact, it's something I wasn't even considering yet until praying one night, when I felt God led me to this decision.

The honest and bitter truth of it is that my body can't do it again. Or maybe "shouldn't" is the better way to put it. Either way, I've been blessed beyond measure to have had the ability to carry and naturally birth two beautiful, healthy babies. I can't even tell you how many times I've been questioned by doctors and other professionals who say, "sorry to be rude but... I actually didn't know people with CF could have children." The fact that I can, and did, is truly a miracle that I do not take lightly. So, though we have truthfully considered having a larger family, I feel God spoke to me and told me that, at least as far as natural children are concerned, we've been blessed and should be thankful, but we're done.

So now I can be free to pin cute baby pins or tell you I have "exciting news to share" without the worry of making eyebrows raise. And hopefully I can be somewhat free of the questions of "when are you going to try for that girl?" We are very happy with our family of four, and blessed to have our two amazing boys. I'm also blessed that so many of our friends have little girls that I can buy frilly clothes for and have tea parties with, and even better yet, that most of them still have their "baby number two"s to work on that we can hold, snuggle, and give back. ;)

Again

Goodness gracious... there has been so much going on I don't even know where to start. With colds, stomach bugs, crazy weather, and everything else, it kind of feels like there's been a lot of chaos around here. And it's going to get a bit worse before it gets better, it looks like. 

I had a CF appointment earlier this week and, despite having fended off the colds that all the boys suffered from (or so I thought), my lung function had dropped. Like, drastically dropped. In retrospect I shouldn't have been so shocked; we have an upcoming ski trip booked for which I had already planned to just stay at the cabin with the kiddos because I "don't have the energy to put on all that gear". But still, I've been working very hard on my health lately, so the large drop was an unpleasant surprise.

In addition to that, I already had a sinus surgery scheduled for Wednesday next week. This is one of the puzzle pieces that should hopefully help me start feeling better. I've been suffering from sinus infection after sinus infection so my CF doctor and I decided it was time for me to see an ENT again. After a scope and a CT scan, it was decided that surgery was the best option to clear out as much of the infection as possible. I had this same surgery done in 2008 and, again in retrospect, I realized that between 2006 and 2008 I had been admitted to the hospital for CF exacerbations 2 or 3 times. This past spring, April 2013, was the first time since then that I have had do IV antibiotics! I don't think sinus surgery is going to be a magical cure, but I am certainly hoping it will give me some relief.

So, what to do when lung function has dropped and you have an upcoming surgery? The answer was IVs. Again. As it is, the last time I had my sinus surgery they put me on IVs for 2 weeks as a precaution. I was trying to avoid that this time around (antibiotics as a "precaution" when I already have multiple antibiotic-resistant strains of bacteria?), but it looks like it really is the best option. It's funny, but I kind of think the big drop was God's way of convincing me to go ahead with the IV antibiotics, otherwise I would have fought them. 

Aside from trying to use antibiotics judiciously, one of the biggest reasons I wanted to avoid IVs was because of the PICC line. I had a truly miserable experience the last time I had one put in (and the post I linked to doesn't even include the part about the fact that they couldn't even remove it because the doctor put it in too tight!). That, when I was already nervous, kind of created a climate that's perfect for a panic attack/nervous breakdown. I couldn't even listen to my doctor when he was trying to explain his plan because I started crying the moment he said "IV". I told him my concerns, and he thankfully agreed to schedule me to have the procedure done at a different hospital that's NOT a teaching hospital. My sister also sent me a sweet "Worry Healing Stone" in the shape of a heart to bring along with me to help me stay calm. Oh, and an awesome stash of candy!

I write all of this just to keep family informed, and to ask for prayers for the upcoming procedures (and recovery):

PICC line procedure tomorrow, 2/7

Sinus surgery next Wednesday, 2/12

General prayers for keeping up with the course of antibiotics

Diane's Sopa Mexicana

I'm not sure how many who follow my blog know that I spent a semester in college studying in Costa Rica. Stacey and I went together (10 years ago!! Where did the time go??) and we lived with a family; they cooked us breakfast and dinner every day, and the food was always fabulous. Well... except for the plantain and cheese pie. Imagine mashed banana and chewy cheese... in a pie... for dinner. That one wasn't so fabulous. But pretty much everything else was!

One of the dinners our "mother" made was what she called "Mexican soup". She topped this chicken-based soup with white cheese, corn chips, and avocado. It was one of my favorites! Upon returning home I discovered that, sure enough, Mexican restaurants here often serve a very similar chicken soup.

[I can't really find a natural segue to the next paragraph, but I promise I'll tie it together.]

We've recently started buying whole chickens instead of just chicken breasts for meals; we find it's actually quite a bit cheaper and if we're careful we can get 2 meals (plus some lunch) from each chicken. I've also been putting the bones in my crock pot once we've cleaned as much meat off as possible and letting them go for 24 hours with some veggies until I have a lovely chicken broth. Each week I've been making a different soup for my lunches with the broth (plus freezing some of the extra broth for use in sauces and for cooking rice or steaming veggies).

Besides the fact that bone broth has a lot of great health benefits (homemade, of course), it makes quite a warm and satisfying lunch on these colder winter days. My go-to soup is just chicken broth with some veggies (carrots, celery, onion) and rice. Easy peasy! But I was getting a little bored (and hungry) so I started looking for some other ideas. I did a kale and white bean soup one week, which was fabulous, then I did an old favorite potato, chickpea, spinach soup last week (which I ended up being able to share with my friend Cassie while she was snowed in here! Perfect!)

For some reason this week I decided I wanted to do a soup with rice and beans in it and I just started throwing things in a pot instead of searching for a recipe as I usually do. Though I rarely follow recipes as they're written, I even more rarely attempt to cook something without at least a guide, so I'm not quite sure what bug bit me, but once all was said and done, and without really intending to, I ended up with a soup that was very reminiscent of my "Costa Rican Mexican soup".  I enjoyed it so much I thought I'd share the "recipe" for you to give it a try (and as a means for me keep track of it!).

Lovely photo courtesy of Wynn Anne's Meanderings

Diane's Sopa Mexicana

Ingredients:

• 6 cups of chicken broth (I know this is a frustrating measurement if you're using boxed or canned broth, sorry! But, hey, if you need tips for making your own bone broth I'll be happy to share some!)
• 1 can of diced tomatoes, juices included
• 1 1/2 tsp. salt (my broth had no salt at all, so adjust as necessary. I also have the luxury of being allowed to eat as much salt as I desire and I tend to like things salty.)
• 1 tsp. cumin
• 1 tsp. chili powder
• 1/2 tsp. coriander
• 1/4 to 1/2 cup of rice (I used about 3/4 cup and it turned out quite a bit thicker than I intended. Still yummy, but I would use less next time.)
• 1 can of beans, drained (I used pinto, but I think Great Northern or even black beans would be yummy)
• 1/2 cup leftover chicken (not necessary if you don't have any)
• Tortilla chips
• Avocado

[As I said above, I rarely follow a recipe as it's written, so I apologize for all my addenda to my list, but I'm always thinking about alternatives and adjustments]

Directions:

1. Add chicken broth, tomatoes, salt, cumin, chili powder, and coriander to a large pot. Bring to a boil.
2. Add rice and lower temperature. Simmer until rice is tender (35 minutes in my case. I used brown rice). [Side note: you could throw in leftover cooked rice and skip this step!]
3. Add drained beans and chicken and cook until heated through.
4. Serve topped with crushed tortilla chips and diced avocado! The avocado is a MUST!

As I said, I added a little too much rice, and it was already quite thick in the above picture, but, as you can imagine, the rice soaked up even more of the broth and now I have more of a stew (or chili as Drew called it), but it is still just as yummy and tasty! Enjoy!

"Monday" Minute: Mirror, mirror

I meant to post these yesterday, but I forgot. I was trying to get a picture of James snuggling with me, so I turned the camera on my phone to face forward. James caught a glimpse of himself on the screen and got that huge grin that told me it was time to turn the video camera on...



Of course Drew wanted a turn too...



And then James caught me watching the video of him watching himself...



My boys are so silly and cute!

Only in Georgia

Our one day playing out in the snow reminded me of one of the reasons I am thankful I live in Georgia- while I do miss the snow from time to time, I can see how it would quickly get old. Especially with kids. As if the effort it took to bundle the kids to go out and play wasn't enough, the wet mess that was brought back inside afterwards was the straw that broke the camel's back. I felt like a bad mommy for not letting Drew go outside to play in the snow that still remained on the ground on Thursday. I tried to make myself feel better by reminding myself that we're going on a ski trip in a few weeks and that he'll get another chance to play in the snow then. But still, the opportunities to play in the snow are so few and far between, so when I saw that there were still patches of snow in our backyard even on Friday, and that the temperature was 50, I figured it was a perfect opportunity to go outside and play without having to get so bundled up, and with a lot less snow to trudge back inside!

James was not a fan of the snow, as you saw, so I waited until the little ones (yes, plural, we were graced with the company of Alyson yesterday, who was also not a fan of how the snow made her boots "dirty") were down for naps then Drew and I ventured out with only thin jackets and mittens. Thankfully the warm temperature meant packing snow so Drew and I built a snowman.

The tip of a carrot and some raisins

Then we had fun playing in the various remaining pockets of snow.

We were still a bit wet, but only our shoes and mittens needed to dry, instead of piles of jackets, pants, hats, scarves, etc.

Our backyard is shaded by our house most of the day and only gets a bit of afternoon sun, which has allowed the snow to stick around. Even today (Saturday) there is still a small amount of snow back there, though it's disappearing quickly. School was cancelled for me yet again on Friday; initially I was surprised, but my backyard reminded me that shady patches could still be dangerous. Sure enough, I ran a few errands yesterday and was surprised by just how much ice remained on some parts of the roads. I actually ended up being surprised instead that schools in the county I live in (I teach in a different county) were not cancelled yesterday after I saw a couple icy school parking lots and large icy turning lanes just outside of a nearby school. But still, all I could think was, "only in Georgia would we have temperatures below freezing for days followed by temperatures in the 50s!" It sure was fun to play in snow and not worry about being cold!