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 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 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 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 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'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!