News provided by Cystic Fibrosis News Today

Tuesday, June 7, 2016

Marathon Recap and Takeaways


On Sunday I ran my second marathon: the Rock n Roll San Diego race in, you guessed it, San Diego, CA...

Upon having Bennett, I decided a marathon would be a good way to feel like I was totally back in shape, and a good excuse to have some me-time during the week to train. I suckered a rockstar friend of mine into training with me. Training went like training always seems to go. I did my runs, I felt like I made great progress in my endurance, and by the end of the 16 weeks of training, I was ready for the race...and to be done running for awhile.

We decided to leave the kiddos with Ronnie's mom and make it a super quick trip (since I'm still nursing), so we left early Saturday morning (for the Sunday race). My parents were nice enough to come along as extra cheering crew. They are both marathoners themselves (my dad having run 11 and my mom having run 5), so having their knowledge, encouragement, and presence always helps. My running buddy and her hubby met us there. Saturday was filled with good company and good food. Sunday morning rolled around and it was game time...well race time.

My first marathon I qualified for Boston with a time of 3:34:56 (qualifying by all of 4 seconds). This marathon I set a goal time of 3:30. I trained harder and was in better shape than for my first. So I set out confident that I would accomplish this goal.

I felt good standing at the start line. The gun went off and off we went. We took off and I felt good. My Runkeeper read each mile's stats and I was on pace with my race plan. I finished the half on track to hit my goal...even a couple minutes fast. Then mile 16 hit and my legs felt heavy...not awful, but like I had to work a little harder to keep up with my pace...I started to slow a bit and each mile that my Runkeeper read, my average pace climbed a second. I began feeling a little discouraged and frustrated. However, I had a little cushion, so I made it to mile 20 still on track. I held on through mile 22 still on track. And then, BOOM, Mt Everest. We hit a hill I had seen on the typography map, but didn't think it sounded to bad. Well it looked bad and felt bad when I hit it. It stretched just under a mile. It looked like a death march up it. Thankfully at mile 21.5 my dad joined me to pace me for the last several miles. I could tell he wanted to encourage me up the hill, but respect the pain I felt all at the same time. He could tell I was discouraged. He checked his phone repeatedly as I alternated between walking and running up the hill. My legs were spent. My mind was about finished forcing my body to do what it didn't want to. And then my dad, in his infinite wisdom, said something that I needed to hear...It went something like this. "Don't think about what could have been. That's doesn't matter. You're here now. Worry about finishing well..." He was right. He knew I was semi-giving up because my sub 3:30 goal was out the window. But he knew I'd care about how I finished, even if it wasn't sub 3:30. I let his words roll around in my head as I ran-walked the hill with his encouragement. Bless him! Running on a bad knee just so I'd have support (not to mention it's the same knee that is especially screwed up from training with me for my first marathon...whoopsie)...what a guy. We made it to the top and thankfully it was all downhill from there...literally. I hit mile 25.5 just done. Every turn seemed like you should see the finish line, and then, another turn. I must have asked my dad 10 times, "where's the finish line?!" in desperation...like he could bring it closer...or like I was just missing it. He left me right around the shoot to the finish. As I closed in on the finish line I replayed his words again, "Don't think about what could have been..." his words rand..."Finish well..." I sprinted (well, maybe it wasn't a sprint, but I thought I was! Ha!), my head flopping backward, too heavy to hold up, I passed one last person and crossed the finish line. My time? 3:34:52...setting a PR by 4 seconds. 4 seconds. A time I couldn't have accomplished if it wasn't for my dad, or his well-phrased encouragement.

Finishing a marathon is awesome. Finishing a marathon and learning a life lesson at the same time, priceless! How often in life do we not finish well because we are stuck dwelling on what could have been? So often we give up because we aren't going to hit some benchmark of success we have established. These words I'm going to take with me into other areas of my life.

...with that said, I am going to do another marathon...sub 3:30 is a goal too good to not try again to accomplish. But I am thankful that I finished this one well!

(We'll post pictures from the weekend soon!)

Sunday, May 29, 2016

Photo dump of Life Lately

Summary of life lately through a little photo dump:
These two crack each other up...I love watching how them together!

Papi reading the kids his all time favorite book to another generation

These three cousins like banging this drum together more than anything else at Papi and Nana's

One of my favorite pastimes is watching this little man sleep

Mckenna LOVES gymnastics...and I LOVE her cute little buns in a leotard!

My running buddy and I are a week out from our marathon, and here we were pumped about our last long run!



Keni loves having Bennett tuck her in. They lay together in bed and he makes her giggle by head-butting her

Bennett stays content forever when he's digging in this treasure trove of bath toys


Tuesday, May 17, 2016

Adjustment After the Hospital

Ronnie posted yesterday that he’s home…YIPPEE. He has been home a week, and we are all adjusting to him being home. I know it sounds a little silly, we LOVE when he comes home and are all so happy to have him back, but there is always an adjustment period for all of us that can feel a little hairy.

There’s an obvious adjustment for Ronnie. He has just spent 3 weeks in the “quietness” of his hospital room. There are very little demands of his attention and time. He can sleep when he wants (kind of…I know nurses and PCTs like to come in at 2AM to do stuff they could do in the middle of the day…just because they don’t use their brains. HA!) He only has to worry about himself and getting better most of the day, everyday. He can eat when he wants to eat. He can sleep in. He can stay up late if he wants because he can sleep in. But when he comes home he has to hit the ground running. There are kids yelling and hanging on him. There’s a wife talking his ear off and expecting a partner to take on 50% of the household chores…and more than that, there’s a wife that wants to leave the kids with him and run out the door for her own little “quietness” after 3 weeks home alone. To say there’s a bit of an adjustment needed is the understatement of the century.

The kids and I have to adjust too. By the time he comes home, our days and routines have hit a new groove that works for the three of us. I’m used to being a single mom. Our morning routine looks a certain way. Our nap time and bedtime routines look a certain way. Our schedule fits what works for the 3 of us vs. factoring in Ronnie’s schedule as well. My evenings look different. I shut down post bedtime and retreat to my room to watch TV and crash early. All of that needs to shift again back to the old routine, or at least an updated version of the old routine (we sometimes use this time as an opportunity to reboot our routines).

The kids have to adjust in their own way too. They are no longer the center of attention like they were before. They now have to share my attention at home, in the car, etc. with Ronnie. For Mckenna this can be hard. Keni is our little talker. She talks non-stop. When daddy is gone, mommy almost always has an ear to listen. When daddy comes back, she has competition for my ears. When it’s just me at home, I plan our days to include stuff that is very kid-centered a lot of the day. Once Ronnie is home, it’s back to a more healthy balance. She also is very excited to see Ronnie, but has to share his attention with me and Bennett. It’s a tough adjustment for her.


With all that said, we are so thankful to have him home. It makes life so much more awesome. My mom said it best when I told her we were having to “adjust to Ronnie being home”. She responded, “nice to have to adjust.” Amen to that! Nice indeed!

Monday, May 16, 2016

Out On Bail

Well, I'm home.

I got out last Wednesday and still adjusting a bit to the "real world".  For sitting around as much as I do, it's amazing how little energy I have to keep up with our crazy life upon release. It usually takes me at least a few days to adjust. Now Monday, I feel like I have adjusted pretty well and probably running on at least 70% of my cylinders.

I was back at the gym on Thursday, so of course I had trouble walking, sitting, crouching, and going potty (that required me to sit on a throne) this weekend. The soreness was pretty much gone today, but at the gym we did two variations of squats plus other leg workouts, so I'm pretty much hosed the rest of the week.

The weekend was pretty much the picture of perfection for me and a great way to welcome me back home. On Saturday, Mandi and a friend ran 20 miles (that's not a typo), so I had the kids all alone for the early hours of Saturday. We filled it with a lot of snuggles, playing, a walk and chilling at the coffee shop. I met Mandi at the gym after her run and we did a lot of hanging out until our date night. We managed to fit in dinner, massages and fro-yo into 2 and a half hours. Besides the masseuse complaining that she only got a 7 dollar tip, it was a great night ;)

Sunday was full of family walks, chores, church and family time. Went over to the in-laws for swimming and dinner. Always a good time, and good food. Never a complaint.

So anywho, happy to be back and looking forward to being 100% really soon.

Monday, May 9, 2016

No Major Setbacks

Hospital Stay: Day 21

He said – Well, I sure hope I'm coming down towards the end of this stay. After a setback last week, it feels like I've been getting incrementally better, although I wish it was faster and more consistent. Feels like my health is changing by the hour some days. Fortunately, I haven't had any major setbacks this stay so I will certainly count my blessings.

For now, I'll continue to take it easy; Stuff my face with food; Drink about 120 ounces of water a day; and try not to go insane. The end is near.

She said – This stay is flying by. Our days are so jam-packed that they all just flow one into the next. These days have looked a lot like the past days. Every day has been filled with the gym, swim lessons, a playdate or two, and some errands and some naps. There was school Friday and today. This weekend we went down to see Ronnie Saturday after my long run and the gym. We stayed over night, so Mckenna got to have another sleepover with Ronnie, which is her absolute favorite. We also really lucked out because there was an event at the hospital for all the kiddos…so there were booths with people doing hair, makeup and face paint. They had characters in costume, games, pizza and cupcakes. Keni was in heaven! We stayed until mid-morning on Sunday, and then headed back to Phoenix where we went straight to my parents’ house with my brother, sister-in-law, and niece, and we all just hung by the pool.

Today was more of the usual. The only new tidbit was that I volunteered at Keni’s school, which she always loves, and always leaves me thankful I just have one preschooler at home and not 12! Ha!


We are holding tight to hear how Ronnie’s PFTs look tomorrow. I know he is itching to get out. We miss him a lot, so we’ve love for him to get home SOON. That said, we are doing well, so we don’t want him to get out any earlier than he needs!

Wednesday, May 4, 2016

Single-momming It

Hospital Stay - Day 16

He said – At this time last week, I was thinking there was a pretty good chance of me going home today. Uhhh, nope. Unfortunately, I started to feel new lung pain on Monday and had increased crackles, mucus and coughing. It was slightly better on Tuesday, but still not improved enough not to have an effect on my PFT numbers. I came in at 36, last week 63, this week 56. It's not all in the numbers, but I generally don't like to see them going down while in the Hole. I'll be okay though and we'll come up with a plan. Look forward to being back on the right track soon!

She said – We posted an update on Sunday. It’s Wednesday night. What happened to Monday and Tuesday? Talk about a blur. I’ll fill you in…this, that and the other thing happened…The end ;-)

Kidding.

We have filled our days with swim lessons, the gym, play dates, school, and fun dinners. Mckenna has continued to be a doll. Bennett, despite cutting his top two teeth, has been super flexible with all of our running around and napping on the go, and has been sleeping like a champ at night.

I was really hopeful that Ronnie may get home today. I even thought maybe he was punking me when he said he wasn’t getting home until the end of the week. But punked I am not. It is looking like he will be in awhile longer. But that’s ok. This stay has flown by and another few days to a week, we can do it!


I will share an intimate, slightly morbid, yet slightly empowering thought I had Monday night. I felt a little like supermom as the day was great, I had gotten the kids to bed, and finished picking up the house (clearly my supermom bar is really low). I made my dinner and sat down at the table to eat it. As I sat there in the post-bedtime silence, alone at the table, feeling totally content, I thought to myself, “I think would be ok if something happened to Ronnie. I can do the single mom thing.” Yeah. I warned you. Slightly morbid. I promised Ronnie before we got married that I wouldn’t marry him unless I was totally ok with all of the possibilities of CF, including the possibility of being a young widow or single mom. And I married him feeling like I believed wholeheartedly I was totally ok with it all. Then we had kids, and I thought, “eeeesh…single-momming it is rough!” And it is rough at times…but sitting at the table, eating my dinner feeling confident and fully content, alone, kids in their beds, I felt like I may actually be able to do it! Welp, there you go…an intimate look into my crazy, crazy head! Sorry! Now, let’s hope it’s not going to happen, ever. Our days and lives aren’t as fun without Ronnie around every day. But if God has a plan that goes a different route…I realized for the first time that we could actually do it!

Sunday, May 1, 2016

Battleship

Hospital Stay: Day 13

He said - Had another great weekend with the fam. The cherry on top was Keni having a hospital sleepover. She is always very excited about the opportunity when I'm in here, but when it comes down to it, she sometimes backs out and doesn't actually stay over. She's very concerned about doctors coming in all through the night. Well last night she was not deterred and we had a great time hanging out together. She slept like a stud and we both had a relaxing morning together. I even had the opportunity to teach her how to play Battleship before Mandi and Bugs brought us breakfast :)

She said - This weekend has been a goodie. We left off on Friday I think, so I’ll go with the abridged version of the last 3 days so this doesn’t trail on for hours. Friday was filled with swim lessons, a field trip with Keni’s class to the butterfly wonderland (a butterfly exhibit place), naps, and gym. Saturday morning I had the holy grail of babysitters willing to come at 4:45AM, so I could get my long run in before it started getting hot. After my run, I quickly stopped by the gym, and then hurried home to get myself and the kids ready and packed for Tucson. We headed down to Tucson to see Ronnie. 

Ronnie’s mom took the kiddos for an adventure to McDonald’s and a pet store to give Ronnie and I some time sans kiddos. Then we all just hung out, ate dinner, and then Bennett and I headed back to his mom’s house so Ronnie and Mckenna could have a slumber party. Sunday we woke up and Bennett, Ronnie’s mom and I brought Ronnie and Keni breakfast. Then it was just hospital hanging out, followed by an adventure for lunch outside of the hospital (shhh don’t tell), and then we headed back to Phoenix. Once home, we settled back in, played a little, walked for froyo and did our bedtime routine. All in all it was an awesome weekend. Mckenna has definitely struggled this stay when it comes to saying goodbye to Ronnie. There are lots of sobs and devastation. It’s pretty heartbreaking, but once a little time goes by, she gets it together and she’s back to her happy self. She sure loves her daddy! 


The end is in sight…and we are all ready for it!

Thursday, April 28, 2016

Blueberry Scones. Yum.

Hospital Stay: Day 10

He said – Today was a pretty lazy day. I did get outside to catch some rays and get the heart rate going a bit, but other than that, I was purty lazy. I'm improving daily and feel like I'm probably 50% of the way there or so. As soon as I feel like I'm in a position to succeed outside of these walls, I'm outta here!

They started baking cookies and scones in the cafeteria and putting them out at 9pm. Currently eating a blueberry scone. Gaining weight will be no issue :) 


She said – Today was one of those days when you completely overestimate how much you can fit into a day, but it was a fun day and it went quickly. We took Bennett to swim, came home just in time for our sitter to show up…who I had so I could get a run in and work. She hung with the kids, and then I got home, just in time to take a quick shower, and throw the kids into the car to meet another CF wife and her kiddos at Chick-fil-a to chat and let the kids play. We then popped by my parents’ house because we were up in their neck of the woods. We headed straight to the gym from there so I could get in my back workout and then rushed home to meet our friends at our house to do a pizza dinner in the park. They left right at bedtime, so the kids quickly took baths and I threw them into bed! I did my post bedtime tidy, ate my dinner, and relaxed in bed! It was a good day!

A Big Jump

Hospital Stay: Day 9

He said – Today was a great day. I got to hang out with the fam the last couple of days, and they are certainly the burst of energy that I need while I'm in here...and in a strange way, also an energy drain :) Mandi and I even got to have a date night that consisted of a cafeteria turkey melt and some onion rings. But, and this is a big but, they brought back late night freshly baked cookies to the cafeteria, so we were able to take full advantage. I definitely paid for that decision the next morning.

On the health front, I'm improving. In fact, I made quite a big jump in a week with regards to my FEV1. I came in at a 36% and yesterday I blew a 63%. Now, I didn't feel as bad as a 36 when I came in, but I don't feel as good as a 63 now, so ultimately, the numbers are just numbers.

I'm hoping that in the next week I can start feeling more and more normal and be in a position to kick some booty outside of these walls.

She said – The last couple of days have been fun. We went down to see Ronnie on Tuesday and spent the night at his mom’s house, and then saw him again this morning. Monday night we slept at my parents’ house so Tuesday morning I could get my training run in while the kids were with my parents. Then we headed back towards our house. On the way, we went to Bennett’s swim lesson and the gym and then onto home where we packed up and headed for Tucson. I had a thing for work in Tucson Tuesday night, so we got down there in the mid-afternoon so we could hang out for a bit before I went to my work obligation and the kids went with Ronnie’s mom to Chuck E Cheese. I got back home in time to put the kids down, and then headed back to the hospital for a short little date with Ronnie. Today we brought Ronnie breakfast, hung in the room, played soccer outside, and then headed for home. Once home, we relaxed a bit and then headed to the gym where I met a friend for leg day. It’s always nice to have a buddy at the gym so it feels less awful! Ha! We got home in time for dinner and bedtime routine. One thing I do every night that I haven’t documented here yet is after the kids go down, I do 15-20 minutes of a house tidy. Literally no part of me wants to, but I know that if I don’t, things will get away from me, and then I’ll feel miserable. So I wash all the dishes, pick up, take out the trash, you know, the very basic things you have to do to make your house not look like a war zone. It always feels so good when it’s done, and when I wake up the next day, I’m happy to wake up to a clean house…it feels like a fresh start.


I am so thankful for our time down in Tucson. It sure is nice to see Ronnie’s face in the flesh, even if it’s just for a short amount of time!

Sunday, April 24, 2016

Sunny Day

Hospital Stay: Day 6

He said - I finally got outside today and sat in the sun. It was nice, but you would have thought I ran a marathon when I got back. I still have a little ways to go in here ;)

Other than that, today was a lazy day culminating with a meatball sub made by my brother and mom - yummy. My cousin also brought up a peach/lemon Eeggee (slushy type of thing) and it was pretty glorious. I only get Eeggee's when I'm in the hospital, so it's always a nice little treat to look forward to. 

She said - Today was another pretty good day. Bennett is cutting his top two teeth, so he was up a lot last night. That meant I was a little sleepy today, which meant my fuse was a little shorter. But overall, Mckenna had a good day and Bennett was happy and took a great 3 hour nap…probably making up for his lack of sleep last night. I had a sitter come this morning, so I could get my long run in with my running buddy. We even stopped our run at the coffee shop next to our house to grab an iced coffee before walking home. It was so nice to have a morning of adult conversation. The intention was to go to church after that, but Bennett slept through church, and well, momma wasn’t waking that sleeping baby! But his long nap gave Mckenna and I some nice one-on-one play time that I think she really needed. After Bennett woke up, Keni went down for her nap, so I got one-on-one time with him too. Post naps, we ran a couple errands, and then went to hang out with our friends for a little bit before dinner and bedtime routine. 


Another good day in the books. Here’s to hoping Bennett sleeps tonight!!!

Saturday, April 23, 2016

I'm Just a Phone Call Away

Hospital Stay: Day 5 

He said –Today was a great day with my family. I wasn't feeling all that great, but I did my best to be present and active while they were here.

I've been battling nausea a lot this stay and it really seems to be taking it out of me. But, the lung pain is improving and I think I'm close to being able to take a deep, full breath. When I'm able to do that, I'm sure things will improve much quicker.

It was tough to see them go, but having them around is a good reminder for why I'm here.

She said – Today we got to see Ronnie! We planned on going down to see him tomorrow, but this morning Mckenna was missing Ronnie something fierce. There were tears. She insisted she couldn’t wait one more sleep until she saw him. I tried selling the idea that we were going to do something fun today and that it would make the day go fast. She asked me if I could go do that really fun thing by myself while she went to see daddy. It was then I knew that little girl just needed her daddy. So off we went to Tucson.

We had a nice visit. Poor Ronnie seemed like he wasn't 100% up for visitors, but he rallied for the sake of his Daddy’s Girl! We had lunch, went to the library, and played at the gift shop.

When we left it was brutal. Mckenna was the most upset I’ve seen her about leaving Ronnie. If she made eye contact with him she would just lose it. But we all got through the goodbye, and she slept off her sorrows on the drive home.


We got home just in time for dinner and bedtime routine. I put Bennett down and surprised Mckenna with a “girl’s night”…we watched a show and ate popcorn in my bed. It was a nice way to end the day!

Thursday, April 21, 2016

As expected...


Hospital Day #2

He said – I'm not a big napper, but today I was sleepy. I even managed to take a snooze for about an hour. I'm still looking for the truck that ran me over, but I am seeing little signs of improvement.

Little brother made my dinner tonight - chicken breast with BBQ sauce, asparagus and sweet potato fries. And yes ladies, he's single :)

She said – Day numero dos was another success. Keni is seriously nailing it the last couple days. She’s been an awesome listener, tabled the sass, and has been a joy to be around. Bennett has been a little needy, but he only got up to eat once last night again, so I give him a gold star. I even managed to get their naps to overlap by 45 minutes so I could sneak in a little more work and a little kid-free time! #Winning.

Today was packed full again. We got up and had breakfast; went to Bennett’s swim lesson; and then went to the gym. We then scurried home because I had a babysitter coming so I could get a run in (I’m training for another marathon, and I don’t like running on the treadmill). The kids were with the sitter a few hours while I ran and then did a couple hours of work. I came home and surprised Mckenna with a trip to Chick-fil-a for lunch since she had been such a good girl the last couple days. We came home for naps for the kiddos and then left again for a playdate and dinner with friends. Then it was bedtime!

The day flew by and everyone made it through it with happy hearts! Success.

Wednesday, April 20, 2016

First Day In the Hole

You know when you have known someone for a really long time, except you don’t know their name. They told you it once, but you don’t remember it, and it’s been too long to ask them? Well it kind of feels like to write a blog after not writing one for so long. It’s a little awkward, but at some point, it’s necessary to bite the bullet and ask your name-less BFF their name.

I decided a great way to get back to blogging is to take it back to the basics. This blog started just to document my journey to get back lung function and run a mile, back in 2009 by writing what I did daily. So to get back into the groove, I’m bringing it back old school. I came into the hospital for a tune-up yesterday, so I am going to document my stay and what each day looks like. To add a little fun, we are going to make it a he said-she said format; I am going to write what I did during the day and Mandi is going to share her day…if we are feeling really crazy, maybe Mckenna will share her perspective some days here and there.

Hospital Stay: Day 1 

He said: Today was like most first days in the Hole…It felt like I had poison flowing through my body. I was tired, my eyes were heavy and I was achy all over. I also did PFTs and ended up having the worst numbers I’ve seen since 2009. I’m not shocked, but seeing an FEV1 of 36% was a bit jolting. You know what they say – Nowhere to go but up!

My lungs are certainly feeling much more junky than normal and I have a stabbing pain that is preventing me from taking a full breath. So, are my lungs really that sick right now? Probably not. But I have a lot of work to do and feeling like this is not acceptable, so I’ll do whatever it takes to dig out of this hole.

Looking forward to the challenge.

She said: Today is our first full day of Ronnie in the hole. It started out awesome because both kids slept well! Bennett was only up once in the night to eat, and Mckenna slept in my bed, so I didn’t hear from her except a little snuggle here and there.

We crammed the day full of activities to help the day go faster. First up was the typical morning routine of cartoons and breakfast, then Bennett had a swim lesson, I volunteered at Keni’s school (Bennett came too). After volunteering, Bennett and I came home, he took a nap while I worked, and then we went back to school to pick up Keni. It was then home for naps. While the kids napped I picked up the house and got a little more work in. Post-naps I met a friend at the gym for leg day. After the gym it was home for dinner, baths, and bed.

All in all it was a great day. How Mckenna behaves usually dictates how good the day feels to me…to be honest. Mckenna was a good little listener with a happy heart today, so the day felt pretty smooth. Unfortunately, we did have a couple little crying bouts by Mckenna because she missed Ronnie, but she recovered and was good otherwise. This stay seems like it bums her out more than stays in the past. The stays after Ronnie’s crazy stay where he was in for longer and I had to be with him for 3 weeks, seem to be harder on her. But she will get it one day!

Thursday, January 21, 2016

Being The Parent to a Teenager (With Cystic Fibrosis) Is Hard

It's been awhile since I've answered a question through the blog, or written anything for that matter, so hopefully this spurs me into writing more blogs!



Hey Ronnie. Hope you have been doing well! Question for u. I'm hoping u can give me some insight as to whether or not I'm being too nagging of a mom or not, and to see if you went through some of the feelings/emotions ______ is dealing with right now. 
First, please understand that it is essentially impossible to be a parent and not a nag. I can't imagine a world in which a caring and loving parent doesn't nag once in a while. Now, an apathetic parent won't nag, but if you're an apathetic parent and your child has cystic fibrosis, he or she is probably screwed.
He is 14 yo BTW. 
Say no more! I have known very few, if any, unemotional, or frankly, level-headed 14 year-olds. Certainly some of his response can be as an indirect result of having cystic fibrosis, but it is more likely due to many of the same issues most 14 year-olds go through socially, physically and mentally.
Anyway, he had his clinic visit last week. Not a great visit for him, as his weight and BMI continue to drol, along with the fact he has this lingering cough that reoccur after being off oral antibiotics for a week or 2. Anyway, since that visit he has been not himself. He is usually a pretty laid back, go with the flow, happy...and compliant....kid. But something changed in him after that appt. 
We all like to feel like we're in control and doing a "good job". My guess is that he felt like he had lost some control over his body and as a result "failing". With many CF patients I've known over the years a common response is, "What's the point of taking such good care of myself if it doesn't really matter anyway?". With this, they are saying that death is inevitable and taking good care of themselves doesn't seem worth it. In my opinion of course, they are missing the point. Yup, we're all going to die. I'm not concerned about that. I'm much more concerned about being at the top of my game while I'm alive. It would really suck to feel terrible, hate life and then die. I like the prospect of feeling good, loving life and then dying much better.
I've really been on his case about him taking over more responsibility when it comes to remembering to take his pills, especially his appetite stimulant. I've also been on his case that he needs to be eating more, as I'm afraid if his BMI drops anymore they'll want to do a feeding tube for nighttime.
I'm sure that he is more than aware of the possible consequence of not maintaining a healthy weight. You'd think that'd be a deterrent wouldn't you? Now, who has the ultimate decision to make whether or not he would get a feeding tube if he were to drop below a satisfactory weight? Are you going to make the decision? Will he?
Last night I saw a side of _____ I've never seen. After having a lengthy discussion about him just eating fries for lunch and not taking his pill, he freaked out. Went up to his room and was so angry he kicked the wall putting a hole in it. 
First, I hope that he will be paying to fix the wall. Second, sounds like a teenager. Third, he sounds ripe for natural consequences of his choices. Just as the consequence for kicking a hole in the wall is figuring out how to pay to repair it, the natural consequence of not taking your appetite stimulant and maintaining a healthy weight is medical intervention. It's not a punishment, it's just the result of his choice. Now, if he's making the decision and elects not to get a g-tube, he'll have to deal with those consequences as well.

On a personal note, my mom made basically every medical decision for me until I moved out of the house at 20 years of age. If I lived under her roof, I went by her rules. Her number 1 rule for me was to do what was best for my health. Missing treatments wasn't a option and I often had a tune-up if my numbers slipped just a bit.
Mind you, this is sooooo out of character for him. I tried getting him to talk about what he was feeling, but couldn't get him to open up. I'm guessing he's annoyed as heck with me nagging him about all this CF stuff, and I think he's just plain pissed he can't be a "normal" kid and not have all the worries/responsibilities that CF brings. 
So, is his big issue the appetite stimulant? If he does all his other therapies, which require a lot more time, but has an issue with a pill, I feel like there is something bigger going on. Does he take it at home? Id his issue taking it at school?
My heart is sad for him. I explained to him I don't mean to be a nag....that I am just trying the best I know how to prepare him for taking care of himself when he goes off to college. 
I'm sorry. Being a parent is sooooo hard. Being a parent to someone with a chronic illness can be even tougher.
Do you remember getting upset with your folks like this when it came to CF stuff? 
I'm sure I had my moments, but honestly, my mom established early that it was her way or the highway. I got upset about plenty of stuff, but generally speaking, it wasn't CF related. Maybe it was because the burden of treatment time wasn't as lengthy for me when growing up? Remember, I didn't have a Vest until I was 19 and Pulmozyme came out when I was 14 or so. Until I was 14, I only got pounded by hand twice a day, did albuterol and of course the various pills.
Any words of wisdom or advice you could give me would be appreciated more than you know. Sorry to ramble on, bit I thought you'd be a great person for me to get some input from. Thanks.
I don't have many regrets, but one of them makes since to share here. I made some very bad decisions when I thought life was all about me, friends, school/work, sports and having fun. I've ALWAYS loved my life, but I definitely made decisions in spite of CF and far too often ignored my CF to "be one of the guys" and not let CF or my treatments get in the way. I always felt like a fit in, that wasn't it, but I was too stubborn to let CF cause me to "miss out" on something. If it were a choice between doing a treatment or getting ready to hang with friends, guess what I would do? Deciding to get to the bar early or do my nighttime treatment often resulted in me getting to the bar early. Getting a mid-day treatment in was often trumped by working as much as I could during the day.

Looking back, none of that mattered. Did I have fun? YUP! Was I helping people and making the world a better place? I hope. Would I take it all back to not have to do so many treatments now and miss time with my family? In a heartbeat. I can't tell you how many Valentine Days and anniversaries I've missed because I was in the hospital. It sucks. I feel guilty. I feel completely selfish for the decisions I made in my 20's that lead to a huge drop in my health.

I wish I wouldn't have "lived" so much then so I could live with my family more now. I wasn't nearly mature enough to realize that then and honestly, I don't know what someone could have said or done to change those decisions.

As a parent, I think you need to try and picture yourself 10 years from now and look back and make decisions now that you'll be comfortable with. Make sense?

My mom was tough. There were a lot of times that she wasn't nice. I certainly "hated" her in some moments. But I know she can look back with confidence in the decisions she made with me knowing that they were the best at that time and with the son she had. I love her to pieces and am so thankful for the mom that she was.

Thursday, December 10, 2015

To port or not to port?

That was really never a question for me.

I've been getting PICC lines for the last 20 years or so and with nearly (over?) 50 under my belt, the answer to getting a port or not was an easy one - If it ain't broke, don't fix it. Well, that was the easy answer.

Recently, I've had issues with my PICC lines that started making me open to the idea of actually entertaining a port. It started with PICC line placements taking longer and longer because of so much scar tissue and switching to the other arm when the first one was "shut off". Then there was the time (last year on Thanksgiving) that the PICC line got stuck in my arm the day of discharge and the worry that came along with thinking it may have snapped and was now making it's may through my body. The straw that broke the camel's back, and my tag line, was this last hospital stay in April when they had to leave the line short and weren't able to do any blood draws from it. That became particularly sucky when I had to spend two weeks in the ICU and 35 days total in the Hole with multiple stabs and blood draws.

In short, it's broken.

After I was released, the decision was made - next time I get a tune-up, I'm going with a port.

Well, that time is now.

A port was placed last week and the procedure was actually faster and less painful than getting a PICC placed. There was (and still is) a recovery period with some pain, but it was the same, albeit a longer period with a port, with the PICC.

I was always asked why I didn't get a port (see my answer above), but I thought it would be fair to all of you guys to really think about the answer and try to articulate it in a blog. Here is my attempt.

1. I never liked the idea of leaving the hospital with a medical object in my body. In fact, I'm still not wild about that idea, but it is what it is. What I loved about the PICC line was the fact that when I went home after a hospital stay, I felt like I left the hospital at the hospital. Let me remind you (maybe contrary to what you might think), I don't think about my cystic fibrosis that often. I'm too busy with life. I'm too busy thinking about others' cystic fibrosis. Frankly, I don't see a reason to think about my disease. Doesn't move the ball forward. By leaving with a port in my chest, I'm afraid that I may think about CF more than I want to when I look into the mirror...although I guess you could
argue that the 6 inch scar on my belly would do that.

2. A port always seemed to be the "next (unwanted) step" in the CF life. If you haven't noticed, I like to be different. I don't find my identity in having a disease and therefore try to avoid doing "disease things". I don't know how to put that more eloquently. If I was supposed to live a certain way, feel a certain way or die a certain way because of cystic fibrosis, I would fight like hell not to. I've always been good at compartimentalizing my CF and separating myself from all of the sickness and dying around me, while still being fully immersed in the community. Getting a port just felt like I was taking a step towards being more disease and less Ronnie.

3. I've always been worried about any limitations, real or perceived, with a port. The first two objections I had can be easily overcome as they are mostly mental. I've always prided myself on my mental approach to (CF) life (thanks Mom!!) and there is no doubt that I'll be able to look past (or justify) the medical object in my body and the next step in the CF life, but it's hard to look past limitations that could be physical ones. I've heard the stories. Friends of mine who had to stop certain workouts because of the port. A gentleman in the community who had to change careers due to a port. I don't like being limited. Part of my comeback story has been the ability to push myself in the gym and live life like a nut. If I feel at all inhibited in doing so, I'm afraid of the mental impact caused by the physical limitation. With that said, we've all seen some amazing athletes with CF and a port.

So there you have it. I tried to be as honest and thoughtful with this post in identifying the road mental block to getting a port. Now that the port is in my chest, there is no turning back. I'm all in. I will own this silly little button in my chest and use it as a reminder to push myself even harder to avoid taking the "next step" in this CF life.

Plus, my wife thinks it's sexy. And that my friends, doesn't suck :)