Not Home Long

Well, we weren't home long this first time! We came home Tuesday and he was readmitted Friday when we were back at Ochsner for a checkup. The three problems Danny has are blood too thin, BP too high, and too much fluid.

He's having a heck of a fun time telling everyone here how I punched him in the face, giving him a bloody eye!! It is good to know that the blood vessel popped probably because his blood was too thin, and not because I bonked his head too hard. I don't even remember hitting him and an area on his head is sore enough I think he also has a bruise!! That night while deciding how to decorate his dressing, Danny came up with a creative idea in honor of his new look...

clue: look at the eyes... 

He also has us playing games with the bruises all over his body. Instead of looking for shapes in the clouds, we are looking for shapes in the bruises! Pretend you're Danny and guess what this bruise is!?

Saturn's eye...I'm not sure if that's really a term or if D made it up(I never know whether he is teasing me or not), but I looked up a picture of Saturn and I do recognize the similar shape!

Then we played charades...guess whose shape he has with fluid (normally he's thin)?

~the Grinch!!!

The two full days at home were exhausting trying to get back in a routine with the kids and learn a new one with Danny. It's weird how much more draining emotional stuff can be than physical. In those two days the house was wrecked because I didn't have the energy to pick up. I had decided that this weekend was the time to deal with the mess and then I could relax for real!!!! When Danny was admitted again Friday, I realized that there was no way I was going to be in New Orleans again and leave the house like that...so I drove home to pick up and grab a few things for the hospital and drove back again Friday night. A few friends helped me (thank you ladies!!) and I am so happy to know it's not a disaster anymore.

That experience has taught me a valuable experience. I will not allow the house to get out of control again and we will keep a suitcase packed with a few days of clothes in the car. We need to be prepared to be readmitted anytime we come to New Orleans for a checkup. Now that we're here, sleep has taken over. How crazy and awful is it to sort of be relieved to be back in the hospital so we have to rest because there is nothing else to do?! Danny tried to get up and do things while at home, but his body absolutely said NO after a bit...so he had no choice. But I have such a hard time stopping when there is stuff to do. Sometimes I feel in my spirit so loud and clear "be still" and I usually don't listen. I hate that about me. The truth is that when we listen and obey the Lord with things like resting even though we are busy or reading the Bible and praying even though we are busy, He will bless us by getting more done than we thought possible and by giving our bodies amazing rest and peace. So it's not that I don't know what the Bible says about this issue, it's that I just don't always do it...

"But be doers of the word, and not hearers only, deceiving yourselves. For if anyone is a hearer of the word and not a doer, he is like a man who looks intently at his natural face in a mirror. For he looks at his himself and goes away and at once forgets what he was like. But the one who looks into the perfect law, the law of liberty, and perseveres, being no hearer who forgets but a doer who acts, he will be blessed in his doing." James 1:22-25 

(Read all of James~it's not long, but full of greatness!)

 

 

Danny and I are experiencing something we've been told would happen at any other hospital Danny would be in...we have to train the nurses on how to care for an LVAD patient! The room Danny is currently in is not in the small unit designated for LVAD care because it's full...So we are down the hall with nurses who haven't either begun or completed LVAD training. It's been neat to watch Danny taking ownership of his new, power-supplied body and teaching others everything he knows.

 

 

That is 11 days worth of sterile dressing change supplies. Soon we are going to receive 2 months worth in the mail....I think we will need a bigger cabinet!

Home

It's good to be home...but I've been surprised by a few things and I haven't yet learned how to manage them. Danny still needs my help and support regularly. When we were in the hospital, it was pretty simple for me to meet his needs because he was my only responsibility. When I'm at home the kids need me also and obviously that can be demanding depending on the need! Last night Maggie needed help with homework/study organization, etc...and it was already late, so I felt like helping her was priority so she could get to bed. Right now, I think Charlie feels "neglected"--for lack of a better word", because he's not currently struggling like Maggie is, so she takes more of my time. At any rate, while I am caring for whichever child needs me, Danny is laying there waiting on me to do what he needs. That could be making sure he's taking the correct meds at the correct time. (there are so many we like to double check) It could be holding his controller so it doesn't fall and pull open the exit site in his abdomen, or maybe helping him move when he is too weak...there are so many things. Clearly Danny's needs are important and should not be neglected or put off. But the kids' needs are important too! So that's what I'm dealing with. I've got three people (and a dog :-) ) who all want/need me at the same time. Who do I choose and even though the priority is usually pretty clear to me, how do I put off the other two without them feeling some degree of sadness? I know this is just a day in the life of a mom with 1+ child, but it feels magnified since Danny is so sick and I haven't been home in a while so the kiddos' needs (from me) have stacked up over time.

Eye openers/reality checks:

This used to be a typical morning in our house...Danny jumps out of bed while everyone else (except Charlie) is still sleeping. Danny tells us to hurry up and get dressed so we can get going. Then, we are off to run errands, or watch kid sports, etc...My first morning home I got out of bed and proceeded to the kitchen without a thought. Danny can't reach the kitchen sink when he's still plugged into the wall at night. He can reach our bathroom and the refrigerator, but not the rest of the kitchen. The power module (the power unit that the controller plugs into) has to be plugged directly into the wall outlet...no extension cords or power bars of any type. This means Danny's mobility is truly limited to how long the cord is. There's a routine of data keeping Danny must do each morning before getting dressed for the day. It's not as simple as throw on something and let's get going. The morning routine takes him at least an hour, depending on how he feels/fast he can move.

I'm trying to imagine how it would feel to be attached to a power cord and limited to its' length without switching myself over to battery power. Even if I didn't feel restricted and miserable before, I think that would do it for me.

We've also been discussing our action plan in case of a power outage. He is on the priority list for power restoration since his life is dependant upon power, but that doesn't necessarily mean it will come back on right away. In talking through how a generator works, neither one of us feels safe using a regular gas one to serve as his power source. Here's why...the power module or battery charger must be plugged directly into the wall--no extension cords or power bars. That would mean the LVAD equipment would have to be directly plugged into the generator, which would be outside. His equipment is not in any way water resistant...in fact, Danny will get electrocuted if it gets wet. Neither one of us is wanting to bring the plugs for his LVAD equipment outside where a generator would be because power generally goes out during storms where water is present. It's just a risk that causes us both stress just to think about. So, we're looking into a whole house or partial house generator, but are definitely unsure and frightened of the cost.

This morning I looked at him and the outside corner of his left eye was all bloody. We think it's just a popped blood vessel, but are waiting for the doctor to return our call.

Danny appears to be retaining fluid again...it's like he has a layer of blubber all over, which is unusual for him. His breathing seems to be more labored than it was when he was discharged. Of course, his eye is scary--but maybe no big deal at all...waiting to hear from the doctor.

Is he going to get better? Stronger? Will it really be safe to leave him alone at some point? Will I even be able to function at school when I do go back? How can I be three people at once for my family who needs me right now? Caring for Danny was much easier at the hospital because they were right there should any problems arise. I'm so scared something will go wrong. I'm so scared I can't handle an emergency. I keep reminding Maggie that no matter how out of control she feels reality is that God is right here with her. She is not alone and He is never going to forsake her. We have to live by faith sometimes/often times because our feelings aren't right--they don't line up with what the Bible says.

Father God, help me to be still and know that you are God. Help me to trust in your control over Danny's health and rest in the peace that can only come from you. Help me to not worry about tomorrow but be thankful for today. Help my faith be so evident that our kids see it and want more of their own. Help me to train the kids in your ways by example and not by words alone. Keep Danny safe...repair his eye and prevent any bleeding elsewhere in his head. Give us both rest as we are exhausted. Help Danny sleep at night and take away nightmares. Use this time to draw our kids closer to you than they thought possible.

 

 

 

 

Unbelievable

This is truly unbelievable...except that Danny designs software, so it's not really!! This morning when Danny switched from AC power to battery power, the controller faulted again. It gave the same message as yesterday:" change controller and call hospital contact". So, just like yesterday, we removed his driveline from its faulty computer and switched to another one. 

The irony here is that as a software developer, Danny is always developing and debugging and therefore is quite familiar with pushing out new software. Before software is available to the public, it goes through a QA (quality assurance) period where it is thoroughly tested for bugs. Even after the software is made available for public use, it is still constantly being updated and cleaned of any new errors that may be found (this is why you have routine updates to software you use). Danny's LVAD equipment is no different. The hardware (heart pump) is working just fine. It's the software running the computer (which controls the heart pump) that's erring. The new controller has only been in production for a few months so Danny is not happy about why these very obvious and serious errors are happening (2 days in a row) if it went through the appropriate QA process. At any rate, as I see it and have seen it for many years, that's how computer stuff goes...it works great until it doesn't! It just so happens that THIS computer stuff is keeping him alive, not just a program he's written to make some company's work flow process smoother. 

We think they are going to keep him another day just to be sure the controller isn't going to fail a third day in a row. That would be really crazy!!

In terms of bloodwork and "numbers" as the doctors around her like to say...they are still tweaking his BP meds and Coumadin a bit, but apparently that's an ongoing process for LVAD patients. We are learning that Danny might be back here fairly routinely for a day or two to receive Heparin IVs (make his blood thinner) or change up the BP meds. The LVAD patients are like family members on this floor...which is nice, or maybe not because who wants to be in and out of the hospital so much that you're a part of the staff family?!?!

In the end, he's alive, feeling pretty good, and happy...and that's good news!

Charlie called last night and said the sweetest thing ever: "Mommy, I know this may seem selfish, but do you think you could drive home to tuck me in bed?" I'm crying again just typing the words. I told him we would be home very soon and he understands, but wow!!! That was hard. 

It's a good thing that God loves those kids more than we do as impossible as that is to comprehend...and God's arms can ultimately do more for Charlie than mine. However, no matter how old you get, sometimes you just need your mama!!!

Not a Fire Drill

I learned that doctors don't run "fire drills" for their patients. 

This morning (after the kids had been gone for about 20 minutes, thank goodness), Danny and I switched him over to battery for the day. When he was on battery, Danny did a controller self-test, just like he does every day. The controller went through the self-test and at the end, it alarmed and the screen said "system controller hardware fault...change controller...call hospital contact". Danny and I hesitated for a moment in complete shock. We then jumped into action...paged the LVAD contact on call, called the nurse, and grabbed the emergency bag with the spare controller. The LVAD coordinator called me back as the charge nurse was coming in the room. The coordinator stayed on the phone while I went through the steps to change out the controller and the charge nurse hovered very closely (I was grateful for the hovering!!). It was extremely intense and not as quick and smooth as I would have preferred; however, it was the first time in this serious emergency and in the end, we did great. 

Afterwards, the three of us (Danny, charge nurse, and I) sat there together, completely stressed out and exhausted. The nurse admitted that changing out controllers is by far the scariest thing she does at work! I said that at first I thought it was just a test ("fire drill") to make sure we could handle an emergency and she said NO WAY...they would never scare us like that intentionally!!!Think about it...The controller is the computer that runs the motor that functions as Danny's left heart. I had to unplug the driveline (power cord that attaches to the controller and the heart pump) from one controller and plug it into another controller. That means that his heart pump was not working during the time (seconds) the driveline was not connected to either controller. If that changeover process takes too long, Danny dies. Even now, about 9.5 hours later, my stomach still hurts when I think of the pressure and consequences involved in that. 

The coordinator came to the hospital to bring us a new controller to act as our spare and took the broken one to send back to the company for an "autopsy" :-)...

When it was just Danny and I left in the room, I grabbed Danny's hand and got on my knees in praise, fear, helplessness, thankfulness, dependency...I'm flooded with praise and thankfulness that God gives me the ability to handle an emergency in the moment and break down later. I'm helpless and stricken with fear without the strength and comfort from the Lord, and completely dependent on Him for every part of this. As we prepare to go home, this experience hit me like a ton of bricks that just like we, as parents, are given our children as gifts from the Lord, but he gets them back one day...in the same way God has given me Danny to be my husband and our kid's father and his parent's son and his sister's brother...but the truth is that Danny is God's child eternally and there is a time when God will call Danny back home. It wasn't today. Thank you Lord that it wasn't today. Help me and all of us who love Danny so much trust you that your perfect plan for his life is perfect. I don't know how to live without Danny and I don't want to. I just can't bear to think about it. BUT...I know that whatever the outcome is of this LVAD and future transplant, "as for me and my house, we will serve the Lord!"

I'm not living in fear of living without Danny. We did have a scare today but the backup plan was successful. Thank you Lord for the technology you have helped man create! It's amazing! Thank you for life and life through technology! 

Switching topics to the infected driveline...

The driveline exit site is still red and a little inflamed, but the drainage has dried up. The doctors think it was just irritated by the newer dressing change kit, which uses alcohol instead of soap and water. We are going back to soap and water until the site is much further on its way to being fully healed. 

I THINK we are going home tomorrow (Monday). That was really exciting news for us until Danny's controller failure. The controller doesn't ever have to be changed for most LVAD patients and Danny hasn't even been discharged from the initial surgery yet...I anticipate routine prayers and standing on 2 Timothy 1:7 "For I did not give you a spirit of fear, but of power, love, and of a sound mind..."

When I'm not thinking about being scared of Danny's electronic parts failing, I'm sooooooooo excited to think about home! I'm going to be the best wife, mom, cook, cleaner, picker upper, ironer, organizer, yard worker, teacher, nurse for Danny, and anything else I ever may have not appreciated as much as I should have!!! 

We know a young guy (Charlie's age) who decided (on his own) to make these bracelets and sell them to raise money for Danny. Wow. That's a special kid with a precious, caring heart. Thanks sweetie...I can't wait for my next hug!! 

Possible infection & slumber party

Danny completed the 6 hour excursion yesterday--yaaay!!! We didn't do much because we were both so tired. We made it to the atrium on the first floor and sat down to rest. Then we looked around the pharmacy and sat down to rest again. Next was lunch in the cafeteria and then off to nap in the most comfy chairs next to a fountain that sounds like the rainforest. Keep in mind that the first rest stop to the cafeteria were all very close to eachother...the rainforest nap was a little further. Did I say we are exhausted? I'm not sure there were ever two people more ready to get back to a hospital room than Danny and I were! Maybe that's how all excursions go....

Danny's driveline site (hole where the power cord comes out the abdomen) appears to be getting infected. 2 days ago I noticed redness and a tiny bit of drainage. I notified the nurse who notified her supervisor and charted it in the computer. Yesterday it seemed more red and had more discharge. Again, I notified the nurse but also paged the LVAD coordinator on call. She called the doctor who was to come in this morning and look at my pictures and then order a culture. That's where the ball dropped...Apparently the doctor didn't put the order in, so the nurse didn't know which culture to request/do. He spoke to his charge nurse, who suggested calling the lab to see if there is a standard culture for possible LVAD driveline infections. Can you guess? The lab didn't know. I did the dressing change again just now and it is still red and has a colored discharge. I notified the nurse who said we would find out which culture the doctor wants when she rounds in the morning. I have a feeling that won't go well because it takes a couple of days for those lab results to be ready. A driveline infection is just so serious...truthfully, it's potentially fatal.It could be other things though...reaction to the cord itself, or a pocket of fluid ??(that's a possibility the nurse said). I don't remember the other possibilities she mentioned. Danny is not running fever and his white blood count is normal....those are positive signs of no infection but on the other hand, redness and colored discharge are signs of infection. This is definitely scary but we are just believing in the Lord for complete healing in the driveline exit site!

1. top left     2. top right     3. bottom left     4. bottom right

Fun news: The charge nurse gave us permission to let Maggie and Charlie spend the night with us in Danny's room tonight. We are all so happy to be together again. Maggie and I did some quality homework time together while Danny and Charlie watched the LSU game! 

The hope is that Danny can go home Monday...but I don't want to get my hopes up too much! BP, INR, and the driveline site must all be okay before he will be released. We want God's perfect timing for discharge. As much as we want to be home, it's better to trust in God's timing. 

Please continue to pray for the kids as this is so hard on them. Maggie is still struggling her way through learning organization, time-management, and study skills. Learning those lessons alone can be brutally stressful, but adding Daddy this sick and me not being home either just adds to her worries. 

Thank you for praying!

~T

Excursion Take 2

The doctors just came in and said that right now his numbers look good, so we're going to try an excursion again today. We had the first excursion a few days ago, but only made it through 3 of the six hours. Danny's BP dropped scary low and he had to be rescued by a nurse and wheeled back to the room!

Since then the doctors have been trying to figure out the dosages of BP medicines he needs to be on to stay stable. The other obstacle is his INR skyrocketed to the point where the nurses put him on "room arrest". INR is the measure of blood thickness. So, if the INR is too high, his blood is too thin. He was required to stay in the bed because his INR was so high that any bumps or falls would have caused major bleeding. 

Today, doctors THINK his BP medicines are okay and the labs show that his INR is at a therapeutic (correct) level, so we're off!! 

Danny doesn't have much endurance at all because he's been in a hospital bed and had open heart surgery since 8/9/13, but pretending we can do everything there is to do in the atrium downstairs....here's the agenda:

• 2 cafeteria's
• PJ's for hot tea
• gift shop
• pharmacy (with pretty good shopping/browsing)
• barber shop (maybe another shampoo before going home to wash cloth baths)
• Blood donation (I may give blood today since Danny  he will need some for the upcoming heart transplant)
• many comfy chairs and couches for little naps...or long ones :-)

Hopefully Danny can make it the entire 6 hours. If so, he should be discharged Monday! We have learned that LVAD patients routinely end up back here at Ochsner for a day or so to get Heparin via IV...or some other medicine tweak. The LVAD requires the blood to be a certain consistency of thinness to run properly with no clots. 

Prayers for today: 

• Able to stay on excursion for 6 hours
• The 6 hours are pleasant (tired and naps are ok) and not too difficult
• This other LVAD recipient down the hall isn't doing well emotionally, so we would love for all readers to pray for him. He is older, has had heart troubles for many years prior to this, has Parkinson's, and is just miserable really. We are praying that the Lord would change his heart and spirit...just do miracles in his life that are undeniably the Lord!

God Bless you!!!

~T

Wash cloth baths...he commented today about the things we all take for granted, like showering...

 

Please pray against infection. I was worried about that little spot next to the stitches but the nurse said it was okay at this point. I clean this site very well each night and watch it like a hawk--the driveline goes straight to his heart and infection could kill!

There he is...back on the computer!!!! yaaaaaay!!!!!

What a Day

A phrase to NEVER say to Danny: "Uh oh-you're unplugged!" I was talking about the laptop and he just about came flying out of the bed in fear thinking I was referring to him. (He is already plugged into the wall for the night...) Wow...I really need to watch what I say! 

Last night we made a schedule for today. It took us almost an hour to make the schedule because we really tried to think though it and make it practical. 

Oops...I fell asleep so now it's Tuesday!!
 

It didn't work out as we had planned. The LVAD coordinator came in and we were tested for about 3 hours on instructions, safety warnings, indicator lights and alarms, emergency situations, etc...

Later, he was going on a lap around the 3rd floor and got super dizzy and sat down. A nurse who was walking by noticed how pale and shaky he was got a wheelchair and pushed him back to the room. The nurses were not able to find a pulse using the Doppler (can't find a pulse with a regular BP cuff on LVAD patients). After about 45 minutes they heard a very light pulse that was extremely low. It was determined that Danny's BP medicines had been given and/or changes too aggressively and it just hit him all at once. So, they won't give him any BP meds last night and this morning his numbers are okay so far!

Today is excursion day!!!! That means Danny and I are free to go anywhere on the Ochsner campus for 8 hours. If he feels okay and we are able to manage all (potential) LVAD issues properly, then we should be able to go home tomorrow...Thursday at the latest I think. The thing that would hold us up one more day is tweaking the BP meds more.

Anyway, yaaaaay!!! I get to eat at one of the two (or maybe both) of the cafeterias in his hospital with Danny instead of alone!! Also, can you see what's missing in this picture?






Yep, no IVs...Praise God!!!!!!!!!

Prayer request other than for Danny on the excursion...Maggie is struggling with us being gone. She has had a couple of melt downs in school this week and her teachers are super supportive, but we know that the Lord is the problem solver. Pray for her comfort, organization, (un, dis, non???)-procrastination :) with school work, peace, faith, strength, etc...Maggie internalizes most everything so I can see how she would seem fine through all of this and then finally get to the point where she just cries and melts down. Thanks for praying for our Mags today!!!

I'm so excited to walk through the hospital, holding my husband's hand!! Thank you, Lord, for such a speedy recovery so far.