We're Still Here!

It's been a loooong time since we've posted anything. We're still here and doing well! A lot has been going on in the Parks household lately. It's been a busy year so far. We decided sometime at the tail end of last year we were going to try and sell our house and move. After learning that we were pregnant with our third boy, we realized we were going to outgrow our current home. We could make it work, but it would be tight. We prayed about it and feel we're at a good point in our lives to move. I was hospitalized a few weeks ago for a tune-up after I blew an all-time low FEV1 of 46%. I fought colds off and on since the beginning of the year and we tried a couple rounds of cipro but they didn't do the trick. My FEV1 is back up to 58%, my supposed new baseline (I don't buy it) and I'm feeling great lung wise.

I've been battling some extremely painful knee problems. An orthopedic surgeon diagnosed it as patellofemoral chondrosis. Basically the tendons holding my quads to my knee cap are very loose, stretched out and weak. I've been doing physical therapy for 2 weeks now and see a small improvement. My exercise regimen is on hold for the time being until we get my knees sorted out. It's beyond frustrating to have my lungs in good shape but not be able to capitalize on the opportunity to kick some butt exercising to try and gain more ground with my lung function. This too shall pass. Taking it one week at a time and trusting PT will do the trick. My physical therapists are awesome! One seems to be pretty knowledgeable about CF (surprising and awesome) and has told me repeatedly how amazing and inspiring I am to be doing so well and look so good. I think she may have been hitting on me, but you know....  I'm used to it. ;) Totally kidding by the way.

Monica's pregnancy is going GREAT! This little booger is a mover!! He moves constantly! I'm a little worried we're going to have a Tasmanian devil on our hands when he's born. I forgot how amazing it is to see him move and feel it. It's so incredible feeling your child move around in the womb. She's due July 25th. Her OB is going to let her try for a natural delivery, which Monica's very excited about. We have a c-section scheduled for July 28th, if he hasn't come by then. They will not induce her so he either has to come on his own or they're going in after him.

The boys turned 2 in April. We had a party for them at a local park. We've taken them to some pretty cool places.

Right now things are extremely chaotic. There's always some kind of family function going on, or get together or something we want/need to go to. In the midst of trying to pack up the house and get work done to get it ready to sell (there's a lot of work to do). We were really hoping to already have it listed. That obviously didn't happen. At this point we're hoping to have it on the market at the end of the month at the latest! There's just a lot of work, and with working 5 days a week that doesn't leave much time for doing things. A lot of the work I don't have the know-how to do, so I am having to rely on others to help, and it's a very busy time of the year for everyone. So we shall see.

Here's a few pics of what the boys have been up to lately. Starting off with a photo form when I was admitted when they were 6 months old to a few weeks ago. They've grown so much!!

The boys came and visited me on my birthday at work!

 r

"Driving" the 4-wheeler with Papa.

Had to have "Socks on" with his sandals

First time with their own drinks from a restaurant instead of sippy cups.

Home Sweet Home

I made it home today! Man, oh man, does it feel good to be back home! I was starting to get used to being in The Hole, but there's no place like home! Staying in the hospital for a week wasn't as bad as I would have thought. The days were mainly taken up by breathing treatments and get hand clapped. The only down side is the hospital's new policy on not letting patients leave the floor. I was unable to get out and go for walks/jogs in the park because of this new policy. I understand why they put it in place, but I think we (the CF population) are an exception. The only exercise I was able to get was walking on a treadmill.

I'm excited to be home so I can get some exercise in! I want to see my PFT's up to at least 64% when I go back on Monday. I'm gonna work my butt off this week to make sure that happens!

On a side note, I was released before 10am! This has never happened before. Usually they want me to stay for my 2 o'clock dose of meropenum and then I can leave. Today they got me out fast!

Thankfully, Monica and our families were able to make sure I got to see my boys almost every day! That was by far the worst part of being in there for a week. Not getting to be with my boys all the time!

So far, everything seems to be going good! I'm still coughing a lot more than usual. I'm hoping it's just because stuff is loosening in my lungs and that I won't need a 3rd week of antibiotics. We shall see!

Here's a few more pics from my visits with the boys!

 

Enjoying the view

Jeriah wondering what I'm doing

Jace wondering what I'm doing

Now both looking back to see what dad's doing

Chillin on the couch with Aunt Kara (Jeremy's sister)

They wore their mummy outfits to church and came to see me after



Hole Update & Visiting Daddy

Thought I'd give an update from the Hole. It's Day 3 in here and everything is going smooth! I've only cultured pseudomonas! At one point I was culturing MRSA, stenetrophomonas, and pseudomonas. So, it's awesome that I only have one bug in my lungs!! Only having one bug means being on less IV antibiotics too. 

At the hospital I stay at we get manual CPT. Getting clapped 4 times a day is really moving some junk! I've been crackling and wheezing (not normal for me at all) and with the hand clapping I'm coughing a decent amount of stuff up. 

I did talk to my physician about staying longer and he was totally on board. He was actually glad I mentioned it. He was going to discuss it with me. With the boys at home, life is busier and there are a lot of distractions. So they said I can stay as long as I want. Monica and I agree a week would be good. So, I'll be out of here Monday! 

One thing is for sure, the days go by much slower in here than at home, lol!

Thankfully I've had visits from my boys to help pass the time! They also remind me why I'm here and doing what I'm doing! Here's some pics from their visits!

Trip to The Hole

Looks like its time for a tune-up, which means a trip to "The Hole." It's been over a year and a half since my last admission! I'm very proud of this and it proves that hard work pays off. I've been faithful to two treatment sets a day and exercising (although the exercise hasn't been consistent). 

However, my admission this time is proof that sometimes, even when you're doing everything right, CF still can get the best of you. No matter how many treatments or hours spent exercising, admissions and exacerbations are inevitable. That's CF. 

It seems unfair, it can be frustrating, but it is what it is.

I'm going in with a smile! I'm like Forrest Griffin after he takes a beating in round 1, standing in his corner smiling at his opponent. As if to say, "Yea you got that round, but I'm coming for ya now!" Makes me think of the Disciple song "Game On." So, touché CF, touché. After some IV antibiotics and a couple weeks of intense treatments I'll be back where I was and hopefully higher. My goal is still 70%. I know I can see 70% again, maybe higher. I was getting close. In may of this year I was at 66% after almost a year of rising PFT's! My FEV1 this time is 56%. 

This time is different. Usually when I need an admission or antibiotic pills it's because I had a bad sinus cold that turned into a chest cold and caused a drop in my PFT's. This time feels more like a true CF exacerbation. I don't have any cold symptoms. My PFT's are just down. 

I knew this was coming. Most of us do. I have my own red flags. 

1. When I lay down at night and I cough a bunch as soon as I lay down. Normally I lay down and go to bed without coughing any. When I'm gettin sick I cough a lot when I lay down for a couple minutes. 

2. I cough a lot more all the time. I always cough, but when I'm sick I cough more. People who are around me start to notice my increased coughing too. 

3. I get winded doing things that shouldn't cause me to get winded. Such as carrying the laundry upstairs, going up  a couple flights of stairs at work, and when I exercise having to take breaks or go at a much slower pace. 

4. I am grumpy and irritable. Unfortunately my wife notices this one the most. I get complainy (if that's a word). I become a "negative Nancy" whining about work, people driving, and other insignificant stuff. 

5. I am more tired. Usually I'm up for hanging out later with friends and doing stuff in the evening. I don't want to spend my life being a fuddy-dud. I want to enjoy every moment! When I'm sick, I never want to do anything. All I think about is staying home and relaxing. 

So, I'll be spending the next few days to week in the hospital getting my IV's and taking treatments. Then I'll be at home finishing them up. Ideally I would like to stay in the hospital the entire two weeks or however long it takes. While I'm here I'm forced to focus on my health. When I'm home there are a million distractions that prevent me from taking 4 treatments a day and focusing on my health. With the boys now, it would be very hard on Monica to be home alone for 2 weeks. Granted she'll have help, but it's not the same. So, We agreed that I should probably spend a week in. My CF team usually only wants me to stay for 2-3 days and then go home. They're reasoning is that I'm at risk for catching another "bug" while I'm in here. It's a very valid point. However, I'm here 40 hours a week when I work. I'm already highly at risk. I think the benefit of 4 hand clap treatments and no distractions outweighs the risk of getting more sick. We shall see! I'm not good at being outspoken and expressing my concerns. It's something I'm working on.

I'll be posting updates and hopefully some videos (the boys will most likely be in them :)) 

Thanks for reading to long-winded post!

View from my room on the 13th floor