Friday, August 10, 2012

Hospital IV Pole Rides

Thursday, August 9, 2012

Thankful Thursday: PFTs and Progress

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 girlfriends. I have a great girlfriend who has a daughter just 2.5 months older than Mckenna. It is so nice to get together with my friend and her daughter, both for me and Mckenna. Angie and I love to chat and hang out, and the girls LOVE playing! They are so cute together.

I'm thankful for a passionate husband. Ronnie gets into this and dives right in. Currently he is super into a book about nutrition and exercise and I LOVE watching him get so excited about things.

I'm thankful for good PFTS. Ronnie's is a rockstar and had his PFTs go WAY up over the first week he was in. They NEVER go up after the first week, but this time they did and I'm so thankful. I pray Ronnie will be out and home with us soon, and good PFTs are the first step!

Ronnie's List:

I'm thankful for faster than normal progress while here in the Hole. As I've mentioned before it usually takes about 5 or 6 days for me to feel “normal” as it relates to body achiness and an overall blah feeling, but this time has been kind to me and for that I am grateful. It seems that the quicker I can get through that feeling the faster I improve overall.

I'm thankful for technology that allows me to communicate so easily with my family. It's of course tough being away from my wife and daughter but the computer and iPhone sure make the distance feel smaller. I get about 5 videos a day from Mandi of all of the cute things Mckenna is doing plus iChat and FaceTime are a very common occurrence from my hospital room. 

I'm thankful for my family living in Tucson. It also makes it a little bit easier to be away from Mandi and Mckenna when I have my mom, stepdad and brother visiting often. They are always willing to bring me food and just hang out to help pass the time. I can assure you I would go a little more stir crazy without them around.

So, what are you thankful for today?

Wednesday, August 8, 2012

Update from the Hole - Vol. 376

Hey everyone! I thought I'd give everyone a little update from here in the Hole. I have no idea why it's volume 376, but it's the first number that came to mind.

  • It took me a few days to get scheduled for PICC line, but after what seemed like forever they finally got me down to IR. I guess scheduling wasn't the issue but making the time to get me on the table was. Because of my extensive history with giving PICC lines placed, having them done bedside by specialty nurse just isn't an option. The 40+ PICCs that have passed through these veins have made the tunnels much narrower. I've been told many times that “this is the last one” but so far, I'm still trucking.
  • Both this time and during my last tuneup my CF doctors have bought in to running my antibiotics over a longer period of time. I've got to say, I think it works! Generally, I feel like I was run over by a truck for at least my 1st week. Last stay that feeling only lasted about 2 days while this time it was only present for about 3 to 4. That of course wasn't the reason they decided on longer infusion times, but they found the antibiotics are more effective in killing the bugs. If your CF center isn't on board with this new strategy I would recommend at least bringing it up to them.
  • Many people ask why I come into the hospital so often. The most simple answer -  I come in when I don't feel awesome and under my own power I can't feel more awesome. I of course could still function on a daily basis, still went to the gym, was still a husband and a father, but I just wasn't performing those activities with as much energy. I know that when that time comes it'll be a matter of a month or two before I'm forced to come in for a hospital stay. Let's just say I'm not a fan of being forced to do anything! Rather, I choose to come in before I deteriorate to that point. I found that if you can beat CF to the punch you're generally better off in the long run
  • About 10 days ago at CF clinic I blew a 74 FVC and a 62 FEV1. They repeated PFTs this last Monday and to my surprise they were up. I say this because usually my numbers don't budge after just a week in the Hole and in fact they usually go down. It's often been the case that my numbers don't increase or increase vary slightly over the course of my entire hospital stay. On Monday however my FVC increased to 85 and my FEV1 to 74. I haven't seen those 2 numbers since last November! Not sure how that happened, but I'll take it. With that said, as it relates to being in the hospital, I really don't care what my numbers are. All I care about is that I'm put back into a position that I can kick the crud out of CF on a daily basis. That is the only thing that determines when I come into the hospital and when I leave.

I think those are about the only updates so far. If anything changes all be sure to let you guys know! In the mean time just do one thing for me - DO LIFE!

Tuesday, August 7, 2012

When He Calls Us Home

An excellent question from a reader about a difficult topic. 

I hope you don't mind but I thought of you after receiving some devastating information about a friend who has been battling cancer for 2 years and has now been put on hospice. I've contact you because I know we share a common faith. I cannot wrap my head around the purpose of taking such a vibrant woman of faith home and away from her family, including two young children. 
I am grasping for some level of direction/understanding from others that I know who live a God centered life . . how can I support her - knowing she has "gone to the well" many many times, trying to maintain her faith in the Lord thru all of her painful trials . . . what words are there to offer in such a difficult situation . . .
I'll understand if this is too much of a burden to reply to; however, your words have moved me many times to thinking in a new christian perspective. Thank you for that . . . prayers of love and light to you and your beautiful family. Enjoy each and every second of this blessing!

I know Lisa's story as well, and it's certainly a sad situation.

I'd like to, if I may, ask you to think about this from another perspective - God's. He's not taking her from her home, He's allowing her to actually go Home. It's never easy to leave children behind on this earth, but God didn't create us to serve the world or our children, we were created to serve Him. Part of our service to Him is to eagerly join Him when He has called us back to His arms.

I had many of these same questions when I lost my 16 year old cousin and her dad (my uncle) in a roll-over accident. Jodi was a bright, beautiful, Christ-loving person. I wondered aloud why in the world God would allow that life to be cut short. I was coming at it from a human perspective however. God allowed my cousin to live for 16 wonderful years here on earth before calling her home. That's 16 more years than any of us deserve.

Think of it this way - God has no concept of time (at least as it relates to us). He's already set the beginning and the end of the race. It just so happened that Jodi and Lisa were running a bit faster than the rest of us  Their race is over, and they ran it well.

The only thing we can do in their memory is run the race as well as they did.

As far as what to share with Lisa - I think Paul's life is a great starting point. Paul suffered for Christ unlike many of us will ever experience, yet, he still rejoiced. He knew that the life we live here on earth is but a speck on the continuum of time.

There are times in life that we suffer, only for the fact that we can rejoice in being saved by a Savior who will in a short time, take away all of that pain.

Hope this has helped, even if just a little bit. God bless, and I will continue to pray for peace in this situation.

Monday, August 6, 2012

It's not terrible. It's just different.

It's no secret that Ronnie and I are big supporters of hospital stays. Moreover, Ronnie and I always talk about looking forward to them and what a fun time they can be. I still hold to those two beliefs, but I will tell you, this last hospital stay has been hard.

Ronnie's been in a week, today. Some of you know, Ronnie gets treated in Tucson, 2 hours from our home. We have decided to keep things as normal as possible for Mckenna, so we decided to keep visits to just a couple days a week. Last stay we were down more than that, and it turned her into a monster. She wasn't sleeping and was cranky during the day. It made for a tough 2 weeks, for both Mckenna and myself. This hospital stay I was sure was going to be different. I was sure it would be easier since she's sleeping through the night, taking naps on her own in her crib, and a little slower to become overstimulated. However, that hasn't quite been the case. The day Ronnie left, Mckenna started showing signs of a stuffy/runny nose (blessing that Ronnie wasn't here to catch it, bummer for me to deal with a sick Peanut on my own). Unfortunately, it didn't end with a stuffy nose. She started have diarrhea and a raging diaper rash. My days quickly became filled with a baby that was "off" all day, and totally beside herself screaming as I changed her diaper every 30 minutes. It was exhausting. I looked forward to having help on the weekend when we went to visit Ronnie. I looked forward to seeing Ronnie. I missed being down there with him and all the fun hospital traditions we used to fill the stays with.

Well the weekend came and Mckenna was doing a bit better. I was hopeful that we'd have a fabulous family weekend. Nothing so much went "wrong". Mckenna slept decently well. She wasn't a total overstimulated monster. She was "well behaved" at the hospital. But holy cow, it was exhausting. She wouldn't nap at the hospital, so I drove back and forth, 3 times a day, from his mom's to the hospital. While we were visiting, it was a bit of a chore chasing her around and trying to keep her occupied. Time together was limited to short 2 hour periods, where we didn't really spend any time together, just entertained Mckenna. By Sunday, I was drained.

It's not terrible. It's just different.

Being that it's so different, I have to start changing my expectation. We are so blessed. Ronnie has a great hospital; great medical care. We have great family down there taking care of him, bringing him meals and keeping him company. I have a wonderful daughter keeping me busy. I have family near by to visit daily. These hospital stays can be great, I just have to let go of the old hospital stays. I need to realize I can't be the one caring for Ronnie during that time. I have to not feel guilty that I can't. I have to manage my expectations for how it's going to be. I have to just go into it knowing it will be exhausting. I have to decide going into it that I'm going to just enjoy the phase, as different and difficult as it is. Change is ok. I may not like it sometimes. But change is healthy. Ronnie and I are so blessed. We are blessed with a beautiful, healthy little girl, who is now my focus during hospital stays, instead of Ronnie. I have to remember that the best thing I can do for Ronnie while he's in, is take care of Mckenna and be strong, so that my emotions don't make the stay harder for him. He can take care of himself. And the love and care he does "need", he gets daily from his mom, stepdad, brother, and extended family. He's not alone, I'm just not there. And that's ok. My focus needs to shift from Ronnie, to being a good and strong momma...just for a few weeks. It needs to shift from missing what was, to embracing what it is today. It won't go back to how it least not for awhile. So I need to move on, and cherish our current phase.

All that is fine and dandy. It's really easy to tell myself all of that. It's really easy to know and understand it. It's another thing to actually get there mentally to the point that I don't still have thoughts of what used to be and feel overwhelmed by the current situation. But this is just my second go at it. They'll get better. Last week was better than the whole first hospital stay. This week will be way better than last. This week Mckenna is not sick, so I can go back to the gym, giving me a little time to myself. And since she's not sick, I can hang out with my mommy friend, giving me more interaction with someone that says more than sounds all put together. This week will be better. And this week I'm choosing to change my mindset. Instead of allowing myself to become overwhelmed, and choosing to become sad about what used to be, I'm going to choose to enjoy this week...even when my patience and sanity is running thin.

I understand this blog has a bit of a different tone. I just figured I'd share some raw feelings! Ronnie is 100% positive, in any situation. I'm trying to learn from him. To take my 75% positivity and bump it up quite a few notches! That's the beauty of marrying a man who's so positive, I'm hoping he'll wear off on me :) I will end with this though. We are blessed. In my frustration, in my emotions, in my missing what used to be, I'm constantly reminded just how blessed we are. We have a fabulous life! We have an ideal situation with hospital stays, even if they're a bit more stressful now. We are so blessed!!