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Tuesday, June 23, 2015

From the Chaos: Strengthened Bonds and Learning from the Best

This last hospital stay was eventful, to say the least. It was chaotic, but I wouldn't go back and change it if I could because I learned so much. Now that the dust has settled, and we have successfully neglected the blog for months, I figure it's a good time to share some of the things that I learned, the things that I appreciated, and the things I treasure.

In updates during the stay I touched on what a special time the stay was for our marriage - how much it strengthened us as a couple. But I haven't yet shared the bond it helped form between Ronnie's mom and me.

I've always had a good relationship with Ronnie's mom. I know, I know - there's always supposed to be some great tension between a mother-in-law and her daughter-in-law. And I will say, it is fun to play up the dynamic that is the fodder for so many great movies and shows. But we've never had those issues. Ronnie's mom has always given me respect as a woman, a wife, and a mom. She has always done a great job finding the balance between being involved but not overbearing.

Of course, I've had to figure her out...like anyone. My own mom, I can tell what she's thinking and feeling before she feels it because of who she is and how long I've known her. But Ronnie's mom was a new person to figure out, to read, to learn. And not in a bad way. Just in a way that is the reality in a new relationship.

Well this hospital stay made her entire being come into focus. After a night of epic bloodshed by Ronnie (1500ml), an early morning of trigger-happy residents throwing out all sorts of extreme solutions, and kissing Ronnie goodbye before walking out of the IR for his 4th embolization, I lost it. I walked through the doors into the hallway next to his mom, and I just couldn't hold it together any longer. I hadn't made it but 3 steps out the door when I let out an audible cry. You know the kind. The kind that come from the gut and pour out of your mouth before you realize they're coming. Ronnie's mom's eyes became teary. With the upmost compassion and love she looked me in the eyes and said, "I know it's hard. But don't let him hear you upset." She held me as she walked me farther from the doors that held him. I knew she wasn't telling me to squash my feelings. I knew she hurt just as badly as I did. In that moment she made sense to me. I understood who she was as a person, and who she was as a mom. A woman who had spent 35 years pushing down her visceral feelings to put on a strong, confident face for her son. A woman who's outward strength was the reason Ronnie was who he was. But in her eyes I could tell she was scared. Soft. Tender. But her face and body language showed confidence, strength, poise. I loved and respected her so much more than I already did in that moment. I learned from her.

This is just one example of how I learned from her throughout the 3 weeks we spent being a team - together making all decisions, plans, etc. Ronnie wasn't very lucid, and he certainly wasn't with it enough to make decisions, plans, or to really be company throughout the day. Ronnie's mom was my rock for 3 weeks. Together we navigated a unique situation. I watched how a seasoned pro operates through times like those. I watched how she cared for Ronnie. I knew that no one knows better than her how he likes to be cared for when he can't express it. I knew she had learned through trial and error and knew I should just watch and learn how best to care for my husband by emulating her. It was a weird spot to be in, but a good one. I appreciated having someone else there who was better than I was at what we were doing. It was really nice to have someone guiding a path that was so unfamiliar to me. But she did it in a way that was respectful. Though she was the seasoned pro, she let me take the driver's seat. She very much made sure she wasn't stepping on toes, yet continued to care for Ronnie the way only a mom knows how. And beyond that, she cared for me. She fed me. She held me. She was my mom...not my mother-in-law!

It has bonded us in a way that I cherish, and will not forget. It grew our relationship in a way that I am so thankful for. I wouldn't trade those 3 weeks for anything because of what it gave me in her. And it made me confident that in the future I will be able to navigate any upcoming challenges, from what she taught me, and with her by my side...guiding me.

Saturday, June 20, 2015

29 Weeks Pregnant!

 How far along: 29 weeks pregnant...Due September 3rd!

Gender: Baby BOY!!

Total weight gain: Up 15 lb.

Exercise: Same old, same old. I have been run/walking 4 miles in the mornings about 5 days a week early in the morning to beat the heat…around 5-6AM. I usually alternate running a mile, walking a mile, etc. I managed to pull off running a mile, walking a mile and running the last two miles the other day at a pretty decent clip and it felt great, so that was encouraging! I also then do additional cardio in the afternoon and some weights.

Maternity clothes: I mainly live in workout clothes, dresses, and the pair of normal shorts I bought a couple sizes up. But a friend of mine gave me some of her maternity clothes last week, so I did wear a pair of her maternity pants to work, and a pair of her shorts to dinner the other night…I have to say, they feel pretty glorious.

Miss anything: Sleeping on my stomach. I can cheat it a bit and lay on my stomach with half of me on a pillow, but it just isn’t the same.

Movement: Baby boy’s movements feel like they are getting bigger by the day. I love it.

Have you started to show: Getting large and in charge!

Stretch marks: This is a tricky one. I never got stretch marks on my belly with Mckenna. But ever since puberty I've had stretch marks on my thighs, tush, and hips. They are very fine and you only really see them when the light hits them right. So there's a good chance that I got more with Mckenna, I just have no idea. My guess is I may be getting more as we speak, I just can't see them in comparison to what is already there!

Belly button in or out: It's in...but it's not going to hold on much longer.

Wedding rings on or off: On, when I actually wear them! I take them off for exercise, showers, and sleeping...and with my baby brain and pregnancy brain, I often forget to put them back on!

Sleep: I’ve felt a little more tired lately. I’m not sure if it’s the early mornings starting at 4:50AM paired with Baby N still getting up once in the night to eat, or just from being pregnant…maybe both.

Labor signs: No labor signs, but my Braxton Hicks contractions are legit. I get them when my bladder is full, during exercise, when he's really active, and for no reason at all...so really, I just get them all the time.


Best moment of this week: Baby N has 4 hour visits on Sundays with her mom – with an hour commute on both ends. So she’s gone Sunday afternoons for about 6 hours. This gives Ronnie, Mckenna and me a nice time to do something fun. Last Sunday we went to a community pool that had a lazy river, water slides, etc. It was a blast! We all loved every bit of it…except Mckenna when she stopped enjoying the dance party on the car ride there:
I mean really...don't you love 3 year olds' attitudes?

Friday, June 12, 2015

28 Weeks Pregnant!


How far along: 28 weeks pregnant...Due September 3rd!

Gender: Baby BOY!!

Total weight gain: Up 14.5 lb.

Exercise: This week was a little different because we were in Mexico for part of it, so while in Mexico I just ran/walked with Mckenna in the jogging stroller for 2.5 miles. Then once we got back, I went back to the gym and my morning running buddy. I have (we have) picked up our pace a bit for the running miles, so we do an 8:00-8:40 running pace and walk the miles around a 16:00-18:00 min/mile pace. It feels great!! I have then been going to the gym and walking another couple miles in the afternoons, and lifting weights on a couple muscle groups each day. The last 2 days Ronnie has joined me to lift...it has been AMAZING to be back in the gym together!!

Maternity clothes: Still no maternity clothes. I live in workout clothes, dresses, and the pair of normal shorts I bought a couple sizes up.

Miss anything: Being able to eat sodium filled foods without feeling like a water-retaining blimp the next day. I've cut out a lot of sodium for that reason.

Movement: I cannot get enough of all his movement. Seriously, it's the best feeling in the world.

Have you started to show: Oh yeah! It seems to be growing at rapid speed now.

Stretch marks: This is a tricky one. I never got stretch marks on my belly with Mckenna. But ever since puberty I've had stretch marks on my thighs, tush, and hips. They are very fine and you only really see them when the light hits them right. So there's a good chance that I got more with Mckenna, I just have no idea. My guess is I may be getting more as we speak, I just can't see them in comparison to what is already there!

Belly button in or out: It's in...but it's not going to hold on much longer.

Wedding rings on or off: On, when I actually wear them! I take them off for exercise, showers, and sleeping...and with my baby brain and pregnancy brain, I often forget to put them back on!

Sleep: I've been a little more tired the last few nights, but maybe it's post-vacation catch up!

Labor signs: No labor signs, but my Braxton Hicks contractions are legit. I get them when my bladder is full, during exercise, when he's really active, and for no reason at all...so really, I just get them all the time.


Best moment of this week: We went to Rocky Point, Mexico this weekend for our annual family vacation. Ronnie's entire extended family rents a house. So 30+ of us pack in for a weekend full of relaxation and good company. We weren't sure if we would be able to go this year, but it was a success. Ronnie was about to take it easy but still have fun. Mckenna got to spend endless hours playing with all the kids! It was a amazing!

Thursday, June 4, 2015

27 Weeks Pregnant!


How far along: 27 weeks pregnant...Due September 3rd!

Gender: Baby BOY!!


Total weight gain: Up 12.5 lb.


Exercise: My placenta is moving and isn't covering my cervix anymore, but it still isn't far enough away to clear me for all exercise. That said, I have been able to run some and lift weights. I've been meeting a friend in the mornings for a 4 mile run/walk before the kiddos wake up. We run the first mile, walk the second, run the third, walk the fourth. We run miles between a 9:00 and 9:30 and walk the miles around a 16:00-17:00 min/mile pace. It feels great!! I have then been going to the gym and walking another couple miles, and lifting weights on a couple muscle groups each day.

Maternity clothes: Still no maternity clothes. I live in workout clothes, dresses, and the pair of normal shorts I bought a couple sizes up.


Miss anything: Being able to run without feeling like I have to pee the whole time. I go before I leave, so I know I don't actually have to go, it's just the pressure of baby boy bouncing on my bladder.


Movement: This week baby boy's movements feel even bigger, and I am starting to be able to identify body parts. He also seems to like to use the front of my belly as a hammock. Maybe he will be a snuggler!


Have you started to show: Oh yeah! My belly has really taken off. Although yesterday I took Neylin for a chest X-ray (just precautionary to rule out causes of her wheeze... all is well!). To see if I could be in the room during the X-ray the tech said, "and mom, there's no chance you're pregnant, right?" ....uhhhh why yes, 6 months. I'm sure she wondered how that math worked out...as she held my 6 month old in her hands.


Stretch marks: This is a tricky one. I never got stretch marks on my belly with Mckenna. But ever since puberty I've had stretch marks on my thighs, tush, and hips. They are very fine and you only really see them when the light hits them right. So there's a good chance that I got more with Mckenna, I just have no idea. My guess is I may be getting more as we speak, I just can't see them in comparison to what is already there!


Belly button in or out: It's in...but it's not going to hold on much longer.


Wedding rings on or off: On, when I actually wear them! I take them off for exercise, showers, and sleeping...and with my baby brain and pregnancy brain, I often forget to put them back on!


Sleep: I sleep like any other mom with a 3.5 year old and a 5.5 month old! 


Labor signs: No labor signs, but my Braxton Hicks contractions are legit. I get them when my bladder is full, during exercise, when he's really active, and for no reason at all...so really, I just get them all the time.


Best moment of this week: We had a great week. One of my favorite parts was taking Mckenna to her first movie!! Harkins does a summer movie pass where you buy 10 movies for $7 (yes, $7) and each week at the same time you go and watch the movie of the week. Mckenna isn't a kid that sits still and quiet for long periods, so we weren't sure how it would go, but she did great! We saw The Lorax. It was entertaining for all. 

Monday, June 1, 2015

The First Week Home

It has been amazing to have Ronnie back at home. We are all transitioning well into our new norm, but I have to say, Ronnie has done way better this week than I think any of us thought!

 In the hospital he was on around the clock oxygen and really was only up to go to the bathroom. He came home just on oxygen at night (that's what he's been on for the last 6 years), and has been getting up and around the house. He got home Monday and didn't do much around the house, but by today, he's been up around the house a lot, walking normally (verses kind of slow and hunched over like last week).

He's not quite as tired, though he does take naps here and there. He has also been getting out of the house at least once a day for something...whether it's swim lessons for Mckenna, church, or trips to the grocery store...we even went to a movie as a family on Friday morning. These little adventures usually wipe him out a bit, but you'd never know it, except for his sign of relief and relaxation when he plops himself back down on the couch when we get home...you know the one an "ahhh" said as his body melts into the cushions...it's the same ones I let out when I sit on the couch for the first time after bedtime.

He hasn't started actively "exercising" per say, as playing with the girls and an adventure or two is enough "exercise" for a day for the time being. He did order a new pair of running shoes, however, so I see short walks starting in our future. The only trouble is, with it starting to feel like the surface of the sun here in a Arizona, anything outside needs to be done early, and a trip to the gym is a bit much for 10 minute walk. So I'm thinking it will be a first thing in the morning type of walk.

As for his nausea, it's gotta way better, only surfacing on a rare occasion now. This is meant that he's been able to eat more normally, which has helped his energy level and healing. Right now comfort foods are what are sounding best, but getting plenty of calories and nutrition, making all the difference in the world.

Being less tired, less nauseous, in less pain, and not on pain meds has made a major difference in his personality. For a time there, he was just too tired, sick and uncomfortable to crack the jokes he usually cracks and be his usual goofy and sarcastic self, but now that he has the energy, he's right back to keeping us all on our toes with his whit. I have to say, I missed his humor and sarcasm for a few weeks there, so it has been amazing to have my hubby back in that regard. Like I said to Ronnie, I don't care if he doesn't get back to 100% physically, as long as we get him back to 100% himself!

All in all it was an encouraging week, and he's been a rockstar!!

Thursday, May 28, 2015

26 Weeks Pregnant!

Last time I posted a pic I was 22 weeks...talk about A LOT of growth in 4 weeks!

How far along: 26 weeks pregnant...Due September 3rd!

Gender: Baby BOY!!


Total weight gain: Up 13 lb.


Exercise: Thankfully my placenta has moved some (more on that later), so I've been cleared to do a little more exercise. However, I haven't been totally let loose. I can lift weights as long as I'm not straining too hard doing it (my midwife says as long as I'm not feeling like I have to grunt! Ha!); I can jog (but not run); and obviously I can still walk. So I have been doing what I can when I can. There were 2 weeks in 
there that I was at the hospital around the clock and didn't want to leave for a run, so it was a slow couple weeks, but now I'm back to running, lifting and walking. It feels AMAZING!

Maternity clothes: Still no maternity clothes. I live in workout clothes, dresses, and the pair of normal shorts I bought a couple sizes up.


Miss anything: Being able to run without feeling like I have to pee the whole time. I go before I leave, so I know I don't actually have to go, it's just the pressure of baby boy bouncing on my bladder.


Movement: I'm feeling this little guy move all the time. He's an active little bugger. I love it!


Have you started to show: Oh yeah! The last 3 weeks my belly has really taken off! See?

(As a side note: Anytime I put on a tight workout shirt I think to myself, "Fat girl in a little shirt," in the tune of Chris Farley in Tommy Boy singing, "Fat guys in a little coat)

Stretch marks: This is a tricky one. I never got stretch marks on my belly with Mckenna. But ever since puberty I've had stretch marks on my thighs, tush, and hips. They are very fine and you only really see them when the light hits them right. So there's a good chance that I got more with Mckenna, I just have no idea. My guess is I may be getting more as we speak, I just can't see them in comparison to what is already there!

Belly button in or out: It's in...but creeping towards the surface.


Wedding rings on or off: On, when I actually wear them! I take them off for exercise, showers, and sleeping...and with my baby brain and pregnancy brain, I often forget to put them back on!


Sleep: I sleep like any other mom with a 3.5 year old and a 5.5 month old! I've noticed the last few nights I've been especially tired. It may be from increasing my exercise intensity or from the extra activity of having Ronnie back at home...regardless, I just need to move my bedtime up!


Labor signs: Nope! But I am still having a ton of Braxton Hicks contractions. I get them when my bladder is full, during exercise, when he's really active, and for no reason at all...so really, I just get them all the time.


Best moment of this week: We have had a lot of good moments this week. First and foremost: RONNIE IS HOME!! WAHOO! We have a ways to go until he's 100%, but he has improved leaps and bounds since getting home. We are so thankful to be under one roof as a family. The second GREAT moment was that we had another ultrasound yesterday to check on baby boy and my placenta. Baby boy looks healthy, and my placenta has continued to move! It moved another .37cm away from my cervix, so it's not .97cm away from my cervix. They just want to see it over 1-1.5cm away to clear me for all normal activity, and to allow my to deliver vaginally. We are SO close!

Monday, May 25, 2015

Home Again, Home Again

As of noon today, Ronnie is back home!! After 5 weeks in the hospital, we were all ready to get him home...there's no feeling like it!! They weren't going to do anymore IV antibiotics, so everyone felt it was best to get him home to recoup here. This is just step one in the road to recovery, but we are thankful that to have achieved step one and are fired up to knock out step two...three...four........five hundred...

Right now Ronnie is pretty weak. Between blood loss, muscle atrophy, and the beating his lungs took from all the blood, he is just plan tired and has trouble being up and about much more than a few minutes. We know that this will improve with time, and are just going to do what we need to do to balance the activity needed to regain muscle and lung function with the rest needed to heal and recoup. Another battle right now is major nausea. We aren't sure what is causing it, but it isn't helpful, so we are trying to work through it!

Ways you can be praying for us:
   - Give thanks - Join us in thanking God for stopping the bleeding, bringing Ronnie home, and allowing us to be together again. While we know we have a road ahead of us, our hearts are so joyful and thankful that we can all be together, under one roof, and traveling the road together. It is not lost on us that it is a blessing to just be able to be together, regardless of the circumstances. So first and foremost, pray a prayer of thanksgiving for us!
   - Stamina - I know it has to be exhausting to feel miserable for so long. And I know Ronnie is just plan tired. Please pray for stamina to push through the miserable-ness and tiredness to continue to get stronger.
   - No more nausea - Ronnie needs to start eating more to give his body the nutrients needed to heal. Pray that his nausea disappears, so eating isn't a chore.
   - No bleeding - Ronnie hasn't bled in nearly two weeks. Pray this continues!!

We cannot thank you guys enough for all the texts, messages, comments, and calls. Your love and support is felt and impactful!!

Tuesday, May 19, 2015

Still Going Strong!!

Thankfully, we are still bleed free since Thursday at 2:30AM!! We are so thankful that this is the case!! We now are getting back to his CF tune-up, and going to see what happens regarding the bleeding. They can't tell us why it stopped on its own, and they can't tell us if it maybe just healed on its own. They also can't make a guess as to when/if the bleeding will start again....5 days or 5 years. So here our current plan of action:

- Ease back into treatments - Today Ronnie will start his vest, on a very light setting. In a couple days, he will start inhaled antibiotics (which antibiotic is still TBD), and then Pulmozyme (that will be last added back since literature does note some hemoptysis with it).
- Hypertension medication - He doesn't have hypertension, but some other docs they consulted said that they have found it can help with the bleeding by lowering the heart rate. So we are giving it a try.
- Switch from Tranexamic Acid to Amicar Syrup - Tranexamic Acid helps clot your blood, so he's been on it. But it's not a great longterm option. So they are going to switch him from that to Amicar Syrup, which apparently works by a similar mechanism, but isn't as potent.
- 2 weeks of IV antibiotics - One of the teams Ronnie's team consulted with said this is their standard treatment post-hemoptysis. So they are going with that.
- Hemoptysis Guru review scans - We are having a Dr. from the University of Washington review Ronnie's IR scans, as well as their IR team, to see if there's anything that was missed or something they think they could do, proactively. This was the team recommended to us by our CF team after they asked around and researched to find the best to deal with this specific situation.

Right now we are working on managing lung pain, building strength, and working through feeling like a ticking time bomb. We are all doing well. Just taking each day as it comes! We are eager to get back to normal tune-up mode and then normal life mode. We inch closer every day, so we are thankful for progress. Please join us in praying for a continued lack of bleeding, strength that grows exponentially each day, increased appetite, and daily progress!

Saturday, May 16, 2015

2 Days and Counting...

We cannot thank everyone enough for all the support shown over the last couple days. It has been a nutty ride.

Currently, we are in limbo. Ronnie has not bled since 2:30AM on Thursday morning...so we are over 2 days without an episode of hemoptysis. PRAISE GOD!! We are so thankful for a break in the chaos. After the news Thursday evening that embolization was unsuccessful and was not an option at our hospital at this time to block that particular vessel, we spent yesterday seeking second opinions on what to do to stop the bleeding. However, now that we have made it this long without a bleed, we are now holding off on moving forward with any of those options and leaving Ronnie where he is in Tucson, at least until we know if the bleeds will start again or not. We aren't sure what has aided the bleeding to cease...I believe all the prayers have helped. After the embolization on 5/7, the bleeding did cut down by about 2/3 over the next 24 hours (so we know they got one of the trouble areas), and then dropped off a little more, staying steady at about 75-150ml a day from Sunday through Thursday of this past week, when he had another "little" bleed of around 75ml at 2:30AM. But we haven't seen any bleeding since.

So now we wait, patiently and prayerfully, before seeking any more opinions or options.

He is still really weak. He is functioning with about half as much blood in his body as he usually has. Also, he is on some pain meds to keep his cough a little suppressed, in an attempt to let whatever was bleeding in there heal. We have been able to cut his pain meds by a considerable amount, so he isn't fully sedated and is coughing some in order to start clearing some of the junk out of his lungs that has pooled there over the last couple weeks, but they are still keeping his cough suppressed to an extent. He currently isn't doing any treatments (again, to try not to cough up whatever clot maybe formed to stop the bleeding), apart from an albuterol/atrovent nebulizer 4 times a day. He is getting out of bed here and there, but due to the lack of blood in his body and nausea, doing much more than standing has been a bit much. We are hoping that the bleeding is done and that he can just rest, in order to get back some strength and heal.

Our major prayer for now is that the bleeding won't come back. We have no idea why/how it has stopped, but we will prayerfully ask God to keep it that way. He will bleed again at some point, we are just hoping it's not for awhile and that it's not as much as it has been. We will get things in place in case he does bleed again, but have stopped the frenzied hunt for a set plan, as we will not move forward with any of our opinions as long as no bleeding is occurring. We have stopped looking for second opinions now as well, until we know if we will need to do anything right now or not.

We so appreciate all the support and help. The best way to help right now is via prayers!!

Friday, May 15, 2015

The Beauty of Second Opinions

Unfortunately, yesterday's fifth embolization was not a success. There is one last massive vessel that looks like it could be causing the remaining bleeding. They have tried to access that vessel both last Friday and yesterday, but they cannot get to in a way that they can safely embolize it. It's in a less than ideal location, off the subclavian artery, that makes it risky if they cannot get exactly where they need to be to release a coil. As of now, our hospital's IR team seems to think they cannot do it, and is suggesting a transplant. We do not feel that the logical next step is jumping to transplant...seems like we should work a little harder to fix his current lungs (which sit at 72% lung function as of two weeks ago) before ripping them out and throwing in new ones. For us, we believe second, third and fourth opinions, off site, are necessary as other teams at our hospital, like thoracic and vascular surgery, are unwilling to take the case (at this point). Additionally, we would not choose this hospital to be transplanted at, so all in all, this isn't the right place for us for any of our next options, as much as we love our CF team.

So right now we are seeking second, third and fourth opinions from different docs/hospitals across the country to get their thoughts on logical next steps. We believe that sometimes it just takes the right person with the right skills and knowledge to fix certain problems at the right times, and do not believe that this IR team is the best we can find to fix this problem. We are so thankful that things have settled a bit and that the bleeding is so much less than it was, giving us the luxury to look around for second opinions while it is not life and death. We are choosing to rejoice in small victories, like that, as we continue down the road to recovery...hopefully with his lungs!

Specific Prayer Requests:
- No more bleeding. Boom. I said it. Let's just get bold and ask that God does the healing. We know that our God is big. We know that He created the very process of clotting. Join us in boldly asking God to clot off the area the blood is coming from.
- Good second opinions. We don't care what they are, we just want options. We know that God has gifted people in very unique ways. We are hopeful we can find the person who God has specially equipped his/her hands to fix this problem.
- Peace and patience. We understand that much of this is out of our control at this point. We will continue to do what we can, and pray that we feel at peace about what decisions and next steps we need to take.

Thank you for joining us, arm-in-arm, on our journey. Prayers are the best way to support us and the best medicine!

Thursday, May 14, 2015

Thankful Thursday: We can always be thankful!

Though things have been chaotic and a bit unpredictable, we still have an abundance of things to be thankful for.

We are thankful for family. Our families have rallied around us in a way we can never repay them...though my dad jokes one day we will (I'm wondering if the task of changing adult diapers is in our distant future. Ha!) My parents have stepped up and taken on full kiddo duty...for over a week now. They have rearranged their schedules, given up their sleep, and showered our little ladies with so much love and care. Ronnie's mom has been sharing hospital duties, sharing decision making, and overall being supermom to her son...and me. Ronnie's siblings have helped with kiddos when they were down here. His brother has been by, brought food, kept us company, etc. We couldn't be more blessed by the family we have.

We are thankful for medical care. Though our medical system isn't perfect, and definitely not a well-oiled machine, it is not lost on us the true blessing it is to be able to be treated in a hospital, full of well-educated people, completely paid for by our insurance. Without any of those three things, we would be in big trouble. And by big trouble, I mean big, big trouble!

We are thankful for possibilities. Today Ronnie will go down to Interventional Radiology (IR) for his 5th embolization this stay to try to stop the bleeding. This is our first defense. We are prayerful that this will be the last needed measure. Please join us in praying for this procedure to go well, and that it stops the bleeding. But if it doesn't, we are thankful that there are additional options. Don't get me wrong, the next options kind of blow, but we are hoping there are even more options than we have even been presented. But for today, we are thankful for the IR option, and are thankful that we have hope if the IR option isn't the solution.

Again, please join us in praying for Ronnie's procedure this morning. He is supposed to go in mid-morning Arizona time. Pray for a successful procedure...one that is without hiccups and that fixes the bleeding. Our God is good and His plan is perfect!

Wednesday, May 13, 2015

"Cast My Cares" - Finding Favour

God always seems to have a way of speaking to me through songs. It seems like during difficult times in my life, He puts a new song on the radio I've never heard, or we sing the perfect song at church. This recent bleeding saga Ronnie has had is no exception. On Thursday afternoon I left the hospital for the first time in a couple days to go shower while Ronnie's mom stayed with Ronnie. I had hit a bit of a breaking point, was exhausted, frustrated, scared and emotional. I left to shower...hoping to clear my mind a bit. When I got in the car, this song was on the radio. I had never heard it, and it was exactly what my soul needed at that moment. Enjoy!


Tuesday, May 12, 2015

As the dust settles...

We are making progress. Ronnie's bleeds have slowed, and so has talk of intubation, lobectomies and transplant. Ronnie went from having between 1000 and 1500ml of blood in a 24 hour period, to around 300ml, to now 50ml for the last 2 days. He has gone from being heavily sedated (barely talking or moving) and remembering nothing beyond the last 10 minutes, to sitting up in bed and reasoning through what relationship his nurse's great aunt's dad would be to said nurse. We are feeling so blessed by the progress. But we are still concerned. There is one more area they know will cause him trouble, and the question now becomes do you go in and fix it or see if it will fix itself for a time. Ronnie is concerned he will leave feeling like a ticking time bomb. I am concerned I will be faced with an emergent situation at home, alone, with two kids. But for now, we are thankful that we didn't have to throw him onto an OR table like it sounded we would have to as of just a few days ago. Our God is so good and has been holding Ronnie close. Decisions are still there, needing to be made, but thankfully they can be made slowly and thoughtfully.

Ronnie did receive a blood transfusion of one unit of blood. His hemoglobin levels dropped to a point (levels were 5.5) that there was no choice, it was something that had to be done. This may end up having implications in the future when/if he needs a lung transplant, but it was the right and necessary decision for today, and we trust that God's plan already has it factored into the future in a way that is best for Ronnie.

That's the health side of things.

As for the rest...I'll be honest...Wednesday, Thursday and Friday were nerve-wracking days. There were some tears and a lot of fear. There was also a lot of thankfulness mixed in. We felt thankful for our families and support system. Every time Ronnie would have a moment of lucidness, he would say how thankful he was for his mom and my parents, who have stepped in in a huge way! As for me, I was so thankful to have our kiddos with my parents, and the strength of Ronnie's mom by my side (I will right a whole blog on this later).

But above all, though there was a lot of uncertainty and fear (watching a bleed of 400+ ml an hour after a 200ml bleed can rattle even the most seasoned docs), I think this may be one of the sweetest times in our marriage and as a family. Ronnie is always the rock. Ronnie is always the steady eddy. Ronnie always takes care of everyone else. And for the first time in our marriage, I got to be that for him. As many know, pain meds can really skew a person's mental state (hallucinations, weird/vivid dreams, anxiety, you name it). And Ronnie was himself in some ways, but in others, he wasn't Ronnie at all. He couldn't remember enough or piece together enough to put together the big picture. He woke up Friday having no idea that things had settled and that no one was listing him for transplant. He likes to feel like he is in control when it comes to his health and specifically his health care decisions. So having to turn that over to his mom and I was a place that made him feel vulnerable. But I think it also was a good reminder that none of us are really in control in some situations. That sometimes you have to trust that God is in control at that very second. As he was in the middle of his biggest bleed Wednesday night I could tell he was frustrated and scared. He was barely able to keep up with the rate the blood was coming with his coughs to clear it. The suction certainly couldn't keep up with the rate it exited his mouth. We sat catching the excess in anything we could grab: towels, wash cloths, bed sheets. We were all scared. Doctors and nurses didn't even try to mask it on their faces. And in that moment Ronnie and I just locked eyes, between coughs. I just calmly told him "God is in control and this is his plan;" "We are walking His plan;" "It is ok;" "You're doing a good job;" "No big deal." His fearful eyes would agree as he would give a tiny head nod. Over and over I would repeat the words. When I would see the anxiety build in his eyes I would say, "close your eyes. Quiet and calm. No problem. Quiet and calm. Quiet your mind. Calm your body." And as much fear as I know I felt then, now I simply feel grateful for that sweet time. Not many things we will experience as a couple will bring us closer than that moment. For all the stress, I now look back on those 3 days as one of the sweetest periods in our marriage. I am so thankful for the growth that can come in hard situations. And I know in years to come, we will look back on this week as one of the highlights of our marriage!

Sunday, May 10, 2015

One Heck of a Week

Ronnie last updated almost a week ago. It's been a bit chaotic since. I'll give a brief version of events. When things settle, we will update more, and fill in the gaps with more details.

Tuesday night (technically Wednesday morning, I guess, because it was at midnight), Ronnie started having another bout of hemoptysis, so they moved him back to the ICU. Things Wednesday, Thursday, and Friday were a bit hairy. He coughed up about a 1000ml on Wednesday into Thursday and a little less than that Thursday into Friday. Friday it dropped off to about 300 for the day, and same with yesterday.

In order to try to tame the bleeding, they brought Ronnie back to the IR for embolizations. They brought his in Wednesday night, but he had more bleeds within an hour of coming back up to his room (and continued to have episodes throughout the night...one of which was about 400ml). They brought him back into the IR on Thursday morning. Thursday morning they got another area or two, and that seemed to really slow the bleeding down. During Thursday's procedure there was one additional area they wanted to embolize that they couldn't get to, and he had had enough contrast and radiation for one day (especially compounded with having another 2 within the last week). So they planned to bring him back in Friday to hit that last area. Unfortunately, Friday they were unable to get to the area in the way the needed to release the beads they use to embolize, so after 4 hours of trying, they called it. He continued to bleed Friday, but it was slowed. The volume was less, and each episode it seemed to bleed slower and didn't come up to violently. Friday afternoon they decided to try to get to that last "problem area" this coming Wednesday, from a different access point (arm vs groin). So this weekend we have just been biding our time. The bleeding has improved. He only bled Saturday morning and late afternoon, again this morning, but not enough to measure, and then again late afternoon, but only about 50cc...so he's only at a little over 50 for the day! We will take it.

They have kept him pretty heavily sedated on pain meds in an attempt to keep him still and his cough quiet. It usually isn't ideal for CFers to not cough, and it's not ideal in the sense that he probably has a ton of mucus sitting in there right now, but they have decided to manage the bleeding first, and worry about clearing the mucus second. Also, his hemoglobin levels dropped into the 5s, so they transfused him with a unit of blood, in an attempt to get his numbers back up a bit to prevent organ failure, etc. Of course we wanted to avoid this if possible, as to not cause potential issues down the road with being harder to match for transplant. But once he dropped into the 5s, there was no decision to be made, it just had to be done.

It has been an interesting week to say the least. I came down Tuesday night when the bleeding started. His mom and I spend part of the day both here, and part of the time taking shifts so the other can go shower, get food, etc. He was so snowed on pain meds that he needed someone to hit his call button if he started to have a bleed, and then to help during it by catching spraying/rolling blood that he couldn't catch with his suction thing (I don't know the name of it and don't plan on needing it long enough to learn it!) The girls have been at my parents house most of the time. My mom dropped them off in Tucson on Friday afternoon and my parents picked them up earlier today, so we got to see them a bit, which was nice, but a bit too much of a juggling act. I tried to limit Mckenna's exposure to the scene for the most part, as she is VERY comfortable with medical stuff and blood, but one of his big bleeds would be a bit much, I think...especially the way people run around and some of their poor attempts to mask emotions on their faces (come on people, you're professionals, get it together!) But we did have her come to the hospital for about an hour on Friday and again today for about an hour and a half. Nana, Papi and Grandma all take turns going on mini adventures around the hospital to break up the time. Friday he was really out of it, barely waking up, and I think it took her back a little...even though she knew he was just sleepy from the meds. Today Ronnie has been the most alert, so it was a good lasting snippet for Mckenna to have linger in her brain. She is a smart little girl who reads between the lines, so it's a balancing act. No exposure for a few days and she was verrrrry skeptical, too much and well, it may be too much. We had some interesting conversations (more on that in another blog) that gave me insight into her fears and her brain. For today's visit I prepared her for the mask she would see on him (just oxygen, but via mask with a massive tube to it) by talking about him looking like a scuba diver ("just wait...it's so silly..."). We looked at pictures of scuba divers and then made him flippers for his feet out of an old box and jelly fish for his wall out of coffee filters. That seemed to do the trick! He rallied enough to kick his feet like he was swimming in his flippers.

There are a lot of missing details in there. It's all a bit jumbled in my brain as it is, and a lot to type. There was a lot of chaos Wednesday, Thursday and Friday surrounding treatment options and solutions. We were visited by a surgeon about a potential lobe removal and transplant docs about transplant (yes, you read that right, we were shocked too...I think they were a bit trigger happy!! Thursday they came in guns blazing at 6:30AM...I think it was a case of an overzealous new ICU doc). Of course things like intubation were thrown around. But thankfully things have settled, and we have chosen to take days in 12 hour chunks. Ronnie felt like Wednesday felt really far away, so we just started focusing on the next 12 hours. We are hanging our hats on Wednesday for now. If it's not successful again, we will regroup. But for now we aren't worrying about anything the the next 12 hours and getting to Wednesday with minimal bleeding.

We would love prayers. Prayers for physical and mental strength and stamina for Ronnie. Prayers for peace and sound decision-making for his mom and I. And prayers for the team of doctors and nurses treating him. Our prayer for them is that they will be calm, collected, competent and confident.

I will continue to post updates now that the dust has settled. We will go back in fill in the blanks as time permits!