Friday, May 10, 2013

...The Fun Continues

Mckenna and I have continued to fill our days with fun. Each day we have continued to do some fun adventure. Monday we went to the railroad park for our afternoon adventure. It's this fun park where you can ride a train, look at trains, and ride a carousel (I'm not sure how a carousel fits the theme, but she was into it). The first train video shows Mckenna BALLING because she was startled by the horn...but I missed her being startled and just got the aftermath. The second video was me doing what any (twisted) mom would do. We sat and had lunch looking at the train. And I knew the train would blow its horn before its next run. So I grabbed my camera to make sure I caught the fear on film. One day she will be glad I got it on video, right? Regardless, Ronnie continues to watch it over and over and laugh out loud, so it was worth the footage :) You'll notice in the carousel video, she's not totally sure she likes it and wants to be in the safety of the wagon across the way!
Mckenna being brave...when it wasn't moving

Semi-enjoying the ride after she stopped crying

Tuesday we went to the zoo. Mckenna loves the zoo, and it's familiar. So it was a good way to get out, but not wear her out too badly, and keep her from getting to overwhelmed. I don't have any pictures though because, well, we probably have too many from the zoo already!

And then Wednesday our afternoon adventure was going to see Ronnie. It's a bit of a drive (2:15 from my parents' house), so I drove during her first nap, we hung out for 4 hours between naps, and I drove again during her second nap. It was a lot of time in the car, but we weren't sure how she'd do visiting him (and by how she'd do, I mean, how exhausting it would be for us to entertain her in a 15 by 15 box). Well she did great. She loved it. She had fun in his room exploring, but she REALLY loved walking the halls like the Mayor of UMC. She was little miss meet and greet. "Hi!" "Doctor" "Hi" "Man" "HI" "Woman" "Hi" "Bye bye" "Hi" "Hi" "Doctor"....she said enthusiastically the whole like we would walk the halls. It took everything in her little body to keep her movement to just a walk, as she reallllly wanted to get to run all over, but we wouldn't let her. We brought her down to the new children's hospital where she played with all the toys, activities, etc (see pictures/videos).

 Enjoying the interactive wall with daddy at the hospital.

All in all, it's been a good week. We both miss Ronnie, but we are filling the time with fun. In my opinion, Mckenna's thoughts about hospital stays are already being shaped, and I will stop at nothing to make her love and appreciate them as much as we do.

Thursday, May 9, 2013

Thankful Thursday: Adventures & Snacks

It's thankful Thursday time! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for hospital visits - regardless of length. Mckenna and I went to see Ronnie in the hospital yesterday and it was awesome to be together as a family.

I'm thankful for my parents. We have been living with my mom and dad while Ronnie is in the hole and man does it make life easier. They are such a huge help. The stay would be so much more difficult without them.

I'm thankful for adventures. Mckenna and I have been taking adventures each afternoon and it has made the days fun and fly by.

Ronnie's List:
I'm thankful for a hospital pharmacist who is on top of it. I see the hospital pharmacist almost every day and he is always looking to make slight adjustments to make sure I'm on the right track. It takes an active and engaged team to maximize a hospital stay and I feel very thankful that I have one here.

I'm thankful for snacks from the wifey. Mandi made some good treats for me for this hospital stay that I am taking full advantage of. She sent me down to the Hole with a huge tupperware full of oatmeal raisin cookie muffins and when they visited yesterday, she brought down a big ol' tupperware of "white trash". It's Golden Grahams, pretzel sticks, Coco Puffs, Reese's Pieces and peanuts all covered with melted white chocolate. YUM!

I'm thankful for lip balm. Whenever I'm in the Hole, my lips start cracking and peeling. I'm not sure why, but it's like clock work. Thankfully, I'm able to slather on some lip balm 781 times a day to keep them as moisturized as possible.

So, what are you thankful for today?

Tuesday, May 7, 2013

What Brought Me Into The Hospital

What brought me in the hospital this time, is basically what brought me in the hospital last time - the inability to fight off whatever cold/flu/virus/"insert name here" that I was battling. When I came in the last time, January 7th, I had been fighting a cold since December 15th. When I came in this time, May 3rd, I had been fighting a cold since about January 23rd. Now, that's not to say that I have felt terrible for the last 3 months, that's certainly not the case, but I've probably only been on top of my game about 3 weeks total. It's been full of days (and nights) of throat clearing, nose blowing and throat lozenges sucking that finally made it's way to my lungs.

When I was released from the Hole on January 21st, I blew a 75% FEV1. That's the highest number I've seen in the hospital since 2003. I was VERY encouraged especially since I was coming off a terrible cold over the holidays. I was looking forward to working my booty off and seeing if I could push that number a little higher. Unfortunately, I started sniffling again about 2 days after my release. I was still able to workout, and of course do all of my treatments, but I wasn't able to attack my body with the kind of effort that I usually give. One and a half months later, I had a follow-up clinic appointment - I blew a 63% FEV1. I was certainly disappointed, but not at all shocked. Exercise is what keeps me at the top of my game and I hadn't been able to exercise like a normally do (a lot more walking than running). The team was a little concerned and asked if I needed some sort of intervention and I declined thinking I was on the mend of whatever I was battling.

I started Cayston shortly thereafter and had a few weeks that I felt great. I was running like normal. I was able to push myself. I didn't have a sore throat. My snot wasn't green. I wasn't going through a box of tissue a day. I felt good.

Fast forward to the third week in April. The wheels started coming off the bus. I started up again with a stuffy nose, sore throat and coughing, but I was confident that it wouldn't last long. I was wrong. The fourth week of April I was worthless. I basically laid in bed or on the couch all day doing treatments and then I'd be in bed by 8:00pm every night. I was trying like heck to fight off whatever it was I was battling. I found myself with less and less energy, and worse, symptoms becoming bigger and more pronounced. It all came to a head when on the night of April 27th, I coughed up quit a bit of blood (1/4 cup to 1/2 a cup). I then knew that whatever I had was not just isolated to my head and sinuses.

I called the team on that Monday, after coughing up more blood, to see what they wanted me to do. To be honest, I was calling to see if we wanted to start an oral antibiotic because I really didn't want to go back in the Hole. My pride was getting in the way since it had only been three months since I was last in. After describing my symptoms (blood, pain, shortness of breath, fever), they recommended a lung x-ray to make sure nothing major was going on. Thankfully, the x-ray came back negative, and the plan was to start an oral and inhaled antibiotic and keep them updated. I only continued to go downhill. (I ran a 101 to 102 fever for the entire week)

I fought like crazy on Monday, Tuesday and Wednesday, but on Thursday, the white flag was waived. I knew I needed help. Whatever it was that was going on, I couldn't beat it down "on my own" (its never actually on my own). I swallowed my pride and I called the team. They set up a clinic appointment for me on Friday (May 3rd) and I also did some PFTs. I blew a 57% FEV1. That's a far cry from the 75% I blew a few months earlier. We all agreed that a stay in the Hole was necessary.

So here I am. Writing to you from my bed at UMC Hospital. Doing what I need to do for my family. Not something I wanted to do, but in the big picture, it's not about me, it's about them. If I needed to live here to be able to have the chance to spend more time on this earth with my wife and daughter, I'd do it in a heartbeat. Now, it's all about doing what I need to do in here to maximize my time and hopefully my health.

I raised the white flag last week. I'm looking forward to waiving the checkered one soon.

Monday, May 6, 2013

Let the Games Begin

As some of you may have read, Ronnie is in for a tuneup (and if you didn't read it, you may have gathered it by the lack of postings). It's no secret that Ronnie and I don't dread hospital stays. Before Mckenna was born, we used to treat them like a "vacation" of sorts - filling the time with all sorts of fun traditions. Things are a little different now that Mckenna is in our lives. I no longer stay in the hospital with Ronnie, so for the 2-3 weeks, he is in Tucson and Mckenna and I are in Phoenix (2 hours away). We visit, but any of you that have kids can relate, the room feels about 30 times smaller and the hours 6 times longer. For a kid as active as Mckenna, a hospital room is exhausting to entertain her in, and the last thing Ronnie needs is to get run down while he already doesn't feel great and needs to rest. So we visit, but not much (unfortunately). The first hospital stay was AWFUL. Me, alone, with a 3 month old that wouldn't sleep...really, like I'd hold and nurse her all night, was AWFUL. She was just off the whole stay and it was awful. The next stay was a little better yet. Mckenna actually slept, sooo that was a plus. Then last hospital stay was AWESOME. My parents had moved back and Mckenna and I practically lived with them, all but a night or two here and there. 

So this hospital stay, I was actually looking forward to again. Mckenna loves her Nana and Papi and LOVES playing at their house. I took 2 days a week off so the amount I had to work was WAY down, and I have all sorts of fun activities planned. Each morning I will work and we will just play at the house, and then after Mckenna's first nap, we will go on an adventure to somewhere fun. So far we've been the to zoo (not a new adventure for her, as we've been going 1-2 times a week, but she LOVES it and we just hit the highlights) and to a little aquarium. The aquarium wasn't that great, but she kept talking about the fish, so I think it was memorable at least. My parents also have a pool, so Mckenna is becoming quite the fish herself, which is fun.

Obviously I would prefer to have Ronnie home with us, be at our own house, etc, but this is very much like a vacation - it's really fun, you look forward to it, and then, it's nice to be home. So we've been having a blast on vacation. I told Ronnie the other day that it's actually a little less work for me when he's in now because Nana and Papi do SO much, I mean, I don't make dinner, my mom folded my clean clothes yesterday, I work less, sounds like a sweet deal, right? Not to mention it's SO fun to watch Mckenna with my parents. They are so good to hear and she LOVES being with them. 

Some pictures from the weekend: