Out of Bed

Today was a huge day with some milestones. At 5:45 a.m. 4 nurses helped Danny move from the bed to the chair. It was pretty intense because of the huge spider web of IV lines and other cords/tubes attached to Danny. It truly took all 4 nurses working together to help him stand up and not pull anything out. Currently, he is not allowed to push or pull with his arms, so they had to help Danny stand. The #1 concern is the LVAD (pump) power cord. If that comes unplugged before it is connected to at least one battery, the pump will stop and Danny will die. He was clearly scared about moving and asked the nurses many times if he was going to stay plugged in. They were very patient and kind and reassured him each time he asked...God please give me that kind of patience when I'm his nurse at home. 

He rested in the chair all morning and about lunch time 2 physical therapists arrived. His PT for today was to stand up (with assistance) for 30-60 seconds, twice. That completely wore Danny out and he fell asleep again after that.

After Danny was shocked by his defibrillator a couple of weeks ago, the psychologist on the transplant/LVAD team put Danny on an anti-anxiety and sleep medicine. She did this because he was having nightmares about being shocked again and was terrified to go to sleep. This morning Danny asked why he didn't get that medicine last night and the surgeon told him there is no way he can have it. He told Danny to choose between the pain meds or the anxiety/sleep meds. Danny, feeling unhappy, chose the pain meds. Danny is really struggling with anxiety. He is scared to fall asleep, about the pump breaking, pulling the IV cords, becoming unplugged, or discharged, etc...I don't blame him. Being dependant on machinery to stay alive has got to be scary. He has asked me to pray with him more times than I can count today. God is definitely able to replace Danny's anxiety with peace!!

He is also struggling with pain. We were told today that the younger, thinner, healthier LVAD patients experience more pain that do the older ones. This is because they have more muscle tone and use those muscles without realizing it after surgery and it just hurts. The older, weaker people are not accustomed to using the muscles prior to surgery, so it's not a problem afterwards.

I started reading the LVAD user manual today...it's about an inch thick! I gotta say that this is stressful! Mistakes in dealing with Danny and his LVAD are not just "don't cry over spilled milk" mistakes; they are potentially fatal.

I learned that it is crucial to only unplug one battery at a time (he has two in use when he is not plugged into the wall) when changing from battery power to wall outlet power. If I mess up and unhook both batteries at once, I will kill him. That's just scary. I feel like the more I learn about caring for him, the more unqualified I will think I am. I watched his first dressing change today...I will start helping tomorrow and eventually I will do it alone with the nurses watching. The nurse stressed over and over again about making a sterile field because if I didn't and germs got into the driveline hole, infection would go straight to his heart. That's an unbelievable amount of pressure. Just think about it from Danny's view...he has to completely trust his caregiver--with his life! 

~Tricia

Prayer requests:

Danny: anxiety, sleep without nightmares, peace

Tricia: sleep/feeling rested, ability to learn everything I must learn prior to discharge

Praises: 

Danny: Moved to chair today and stood up with PT twice

Took away a few of the IVs

One Day After Surgery

I'm still in complete awe at how God answered prayers about Danny so much more than what we ever expected!

Timeline:
LVAD,  Thursday
Chest closed up at time of surgery,  Thursday 
Off of ventilator, Friday 
Balloon pump removed, Friday 
Extreme pain from surgical area, Friday  
IV pain meds started and pain getting under control, Friday 
Sit up in bed, Friday evening
Will get out of bed and move to chair, Saturday 
Will move to step down unit (not ICU level) either Saturday                              (8/7) or Sunday (8/8)

If he keeps improving at the fast pace he is now, he could be out of the hospital and back to Baton Rouge in as soon as 10 days!!! We will have to come back to New Orleans at least once a week for a while. (When he has the transplant, we will have to live in New Orleans for about 2 months after hospital discharge...)

The staff here at Ochsner is absolutely amazed at his progress so far, but I know this is all God's doing.

Danny and I have a ton to learn about how to take care of the controller (computer that controls his pump), batteries, driveline (plug-in cord), and the place where the power cord comes out of his abdomen. Mistakes can be fatal, so we need to learn well! Before he is discharged from Ochsner, we both have to pass oral, written, and practical tests. We have to learn how to monitor different things every day and keep the information recorded in a book. It's a lot to learn and seems quite overwhelming at this point, but I know we can do it!

He will go back on the transplant list as soon as his body has recovered enough from this surgery. Transplant is a huge, painful, emotional roller coaster because he gets a call, drops everything to get to New Orleans, do blood and tissue testing to check for compatibility, all to potentially hear that the heart is not for him.

However, God says, "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own" (Matthew 6:34). So, that's what I'm gonna do...focus on one day at a time!

Apparently his recovery will look very different each day here, so I will update and provide pictures often!

Here's the computer that runs his LVAD...It's called a controller. He will wear that on his belt or in a vest. He will also have to carry 2 pretty big batteries all the time and a travel bag with 2 extra batteries and an extra controller. This stuff has to be with him at all times. 

Controller (computer)

4 batteries on battery charger

I have no idea what this thing is yet...

Travel bag with extra controller and spare batteries

~Tricia

Post Op Day 1

We are 24 hours post op and full of gratitude to God for keeping Danny safe during surgery.  Though he is in serious  pain,  he's moving all his body parts, breathing on his own, and is alert and talking.  We were told that recovery would be difficult and so far it's living up to its reputation!   But hey.... We're okay with that!  Today's goals: get pain under control, sit up, remove balloon.

They are letting me stay with Danny tonight, which was not part of the original plan, but helps him get well more quickly, which translates to going home more quickly.  Trust me, after being in the hospital for 4 weeks today, we are really looking forward to going home.  We have a huge manual we have to KNOW and be able to apply before they let us leave. We will have an 8 hour test that evaluates our ability to deal with emergencies that could come up with Danny's mechanical heart.

He is progressing so well at this point that they might move him to a step down unit tomorrow or the next day rather than in a week or two!  That's my Danny, an overachiever!!!

Thanks to you all who are praying for us.   We sense His presence and the prayers of His people!  We will keep you posted!

Praises

Not only did Danny make it through the surgery successfully, but he was one of the 2% who came out of surgery with his chest closed up!! He was moved to an ICU room and at about 8:30 p.m. was taken off the ventilator...apparently a miraculous thing after an LVAD. That's only somewhere between 11-12 hrs after a major open heart surgery!! I'm just completely in awe of how God hears prayers and then answers them in ways so far beyond what we asked for! One of the great things in life is when your own precious child wraps his arms around your legs and says "I love you Mommy" or when you are holding them when they are sick and they just melt into your arms. That's how I feel right now. This has been so scary and hard...tonight I'm all alone in the hotel and can't feel guilty about not being in the ICU with Danny because I'm not allowed in there after hours! I can feel God's arms cradling me in his comfort and peace. I'm so tired and He gives me rest. This is the song I can't get out of my head...I don't know how to put the tune into written form for you, so I guess you have to make that part up!!

As the deer panteth oer the water
So my soul longeth after you.

You alone are my heart's desire
And I long to worship you.

You alone are my strength, my shield
To you alone may my spirit yield

You alone are my heart's desire
And I long to worship you.

God is proving Himself through this experience. The Bible sin 2 Corinthians 12:9, "My grace is sufficient for you, for my power is made perfect in weakness. "

I am not strong...I'm scared, tired, weary, overwhelmed, sad,...all of those things mixed together equals weakness, BUT God's "power is made perfect in weakness"!

Also, why did God do so much, much more than just answer a prayer? Because..."The effectual fervent prayer of a righteous man availeth much" (James 5:16).

LVAD update

The surgery went well!!! The LVAD is in and the surgeon closed up his chest! That means that Danny is among the 2% of people who had a small enough amount of bleeding and whose right heart accepts the new pump that the surgeon felt it was safe to close him up. Another benefit to closing his chest today is that he will go back on blood thinners tomorrow, which adds another level of safety to the whole thing. The one concern the surgeon had was that Danny's valve was too leaky to leave alone. The surgeon had to sew the aortic valve shut to stop the leaking because it would have definitely caused problems with his heart. The problem with closing the valve is that in the rare event the pump stops, there is no place for the blood to flow out to the rest of the body, which would cause certain death. However, the pump failing to work is rare and that is absolutely something God can handle!!!

Danny is still fully sedated and will wake up on his own probably in 6-12 hours. When he is breathing on his own again, he will be extubated. Of course they cannot be fully certain that brain function and liver function is normal yet, but I'm just believing God for that!

I will keep you updated and we still have a very long road ahead of learning how to use this new machine inside of him! He can go back on the transplant list after he is recovered from the LVAD surgery somewhat. Remember, the LVAD is designed to keep him alive until transplant...

But, so far PRAISE GOD!!!!!

Thank You Prayer Warriors!!

Update again soon :)

Tricia

LVAD Surgery

The LVAD procedure has officially begun... the computer monitor switched to "in procedure" about 9:30.

Last night we were both asleep when two doctors came in with an ultrasound machine and started looking at his heart and balloon pump. They were discussing things between themselves and when they finished one of the guys left. Before the second one left, the nurse spoke up and asked Danny and I if we knew why they were doing an ultrasound. I said no, but Danny really said NO! The doctor was a little surprised and said "Oh, well we needed to do an ultrasound because your augmentation was too low and the nurse called us. We wanted to see if the leaky valve was causing a problem with the balloon pump. It is leaky, but the surgery will happen as planned...no change" and then he left. Danny said, "What a bunch of clowns! If they had thought to ask the PATIENT who is lying in the bed how he felt and if he felt like anything had changed, they would have found their answer really quickly. When I woke up I immediately noticed that I didn't feel the balloon pumping anymore." I asked him why he didn't tell the doctors and he said, "you know, they didn't ask!" He is right and this is important for any doctors in training out there who may be reading this. We've been at Ochsner since August 9th and we have seen many, many doctors who are in their fellowship (the two in this situation are fellows). We have had ONE who naturally understood the importance of talking to the  patient and family about symptoms, concerns, thoughts...The rest of the fellows are focused on the textbook and forget to "talk to the patient". Of course they introduce themselves and ask basic questions, but they have not yet developed the skill of learning from the patient. Maybe they don't even know that the patient and family plays a huge role in the diagnostic process, I don't know. I just thought it quite interesting that these two guys came in the room, did an entire ultrasound of Danny's heart and balloon, left, and still didn't know that Danny knew the whole time it wasn't working.

A chest x-ray was also ordered to see if the balloon was working. Well, we know it wasn't/isn't and I'm sure they know by now since the surgery has begun. The surgery can be done with a balloon or without, it's just better to do it with. There's not much sense in worrying about that, so I'll move on.

At another point last night while I was sleeping, Danny called me over to his bed. He told me to listen to the sound and said he remembers that sound while going to sleep as a little boy. I recorded the conversation and sent it to his mom right then (about 1:45 a.m. I think) because it was so sweet. I knew she'd love it! Here it is... 

Well, it will be coming soon. I'm having a compatibility issue between my iPhone and PC. I need Danny!!!! I'll figure it out, don't worry. It's worth checking back because it is a REALLY sweet video. All you moms out there will cry!

Early this morning, the nurse and I gave him a bath and she finished prepping him for surgery...shaving the left side of his chest, last minute blood draws, last minute IV meds,.. When she was done she left us alone before I had to leave for shift change at 6:00 am. Danny was very quiet. I prayed for him and he really just wanted to rest...I think he needed some time alone with the Lord. I took a few pictures, and promised him I'd be there in the ICU with him as soon as I'm allowed. I didn't say much else before I left, because what do you say? "Bye? See you later? See you soon?" I just couldn't find the words, so I just said "I love you" and left.

And here I am, in this freezing cold OR waiting room, with family waiting...

I know many people are praying all day and I will update this as often as I have news.

Thank you! I couldn't do this without the strength that comes from the Lord and the prayers of His people.

~Tricia

Tomorrow is The Day

Well, the day is almost here that no one I know could have ever guessed would happen. At about 7:00 am the surgeon will begin the process of putting in the LVAD. I won't take the time to go into details about what an LVAD is in this post...if you don't know then keep scrolling down to earlier posts and it's all there! 

I am allowed to spend the night with Danny in his current room. However I do have to leave the CCU between 6:00-8:30 am and pm daily for shift change. Currently I'm in a hallway in the hospital waiting for 8:30 pm to get here. Danny requested with tears in his eyes when I left at 6:00 that I return promptly at 8:30. 

Earlier today the surgeon came in and said that he needed to be very clear and not sugar coat anything. The surgery is risky. He could have a stroke and he could die. If he sees a clot in Danny's left heart the surgery is over and Danny must wait for a donor heart. Installing a pump on the left heart with a clot would cause fatal bleeding. if at any point after the surgery, weeks, months...the right side of the heart decides to not do its job, Danny dies. The surgeon described it like this. There is a bucket full of water and you want to get the water out without dumping over the bucket. What do you do? You use a pump. Correct. The left heart is the bucket and the LVAD is the pump. What needs to happen before the pump can pump out the water? Water must go in the bucket. Correct. That's the right heart's job. If at any point after surgery the right heart decides it doesn't want to pump blood into the LVAD (get water into the bucket), the LVAD stops working (the pump runs dry). I don't think the risk can be any clearer than that! 

The surgeon also said that he gives his word to do his best in the OR, but he is not God. However, God is always in the OR with him and in fact, God does the surgeries using the surgeons hands. That part was wonderful and encouraging!!

Next he discussed the days after the LVAD goes in. As I explained before, Danny's chest will remain open for a couple of days to give the right heart all the time it needs to accept the LVAD and work with the LVAD successfully. During these days his chest will be packed with saline and gauze and then wrapped with something I describe as saran wrap. This keeps infection out. The doctors cannot have Danny on blood thinners during surgery or as long as his chest is open because of bleed risk. The surgeon said Danny is on his own during this time and there is nothing he can do to help. It's all on Danny, his body,and his faith. He likened the situation to going into battle in Afghanistan with a knife--with the tip cut off. (Surgery is the battle field, knife is the LVAD, and no tip on the knife is no blood thinners). Danny must survive those days his chest remains open without blood thinners or he will not survive! Once the right heart is happy and his chest is closed, Danny will be intubated (taken off the ventilator) and expected pretty soon thereafter to start walking. Apparently this is excruciating, but necessary for the quickest and best recovery. 

Are you scared? We are! 

I'm a realist. I face problems head on and if I'm dealing with it correctly, I pray my way through the issues. The reality here is that Danny may die tomorrow or in the days after. This could be our last night together and when I have to leave the room at 6:00 am, that may be our last kiss. Do I think that? No Way!!! I couldn't function if I didn't choose to believe the best. But Danny and I have talked a lot about the worst case scenario and I have to say...it's awful. Awful discussion, awful reality. So here I am again saying that this is a lesson in faith, second by second. Also, who am I in the worst scenario? Do I still love God? Do I still believe He is good? Do I still believe He is a healer? The answer is yes. No matter what happens tomorrow, I love the Lord. He is good and wants the best for his children. He is a healer even if he doesn't heal. When you go into battle you have to have your mind made up on what you believe beforehand, otherwise you might crack under the pressure. Danny and I are not cracking!! Here's my heart open wide for all to see. Thank you Lord for this horrible trial because my faith in you is deeper and my need for you is stronger. Our prayer for our children is that they learn the same lessons through this. All of our days are numbered...so let's make sure we learn the lessons well along the way and don't waste them!

It's 8:30 and I'm so excited to get back to Danny. I will be posting tomorrow and I know you will be praying! Thank you, thank you, thank you...from both Danny and I.

~Tricia 
tasauer@cox.net

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