Tuesday, December 31, 2013

Surprise Discharge

Well...the charge nurse came in this morning to tell us she thinks Danny will be discharged today. With no time to process the news, a social worker comes in (whom we have never met) and spends about a minute and a half giving us instructions in a dry, uncaring, unpleasant tone. Danny mentioned something a transplant coordinator had told us about communicating with the donor family and she quickly shut him down (not easy to do) and disagreed...then asked if we had any questions! Unbelievable. When she left we went to the nurse and asked for the other social worker to call us. The other one is usually LVAD and pre-transplant and this one is typically post transplant. But, we have a wonderful relationship with the first one and she told us long ago that we can request to keep her if we wished. Well, we wished and we received!! In this incredibly stressful, overwhelming, and scary four months that we have been at Ochsner, I think we have dealt with maybe 3-4 people we could have done without meeting. Everyone else has been an absolute delight and truly a blessing in so many ways. The people associated with the LVAD clinic are people who I truly miss and wish that we had a friendship with on a personal level outside of the hospital. The good news is that the transplant clinic and the LVAD clinic are in the same area, so we will see them routinely for a long time and less frequently for the rest of Danny's life! 

Danny almost fell apart with stress about being discharged today...we were prepared for Thursday. However, the transplant team reassured him, we have many direct-access phone numbers, and the hotel is down a hallway not too far from the current hospital room he is in!

On a sad note, he is scheduled to have his favorite meal tonight...as shocking as this may be, the hospital cafeteria food is not very good~even in New Orleans. We are considering hanging out in the hospital until after dinner. After you've been in the hospital for a while for a serious, life-changing event, the hospital becomes the comfort zone and it is truly scary to walk away. I've cried at every discharge. I don't know if that's normal or not, but it's definitely how we feel!!

I forgot to mention the one "issue" with his biopsy yesterday. After the surgeon feeds the tube through his carotid artery down to his heart, the nurse is supposed to flush the line. She didn't attach the flusher device properly so the water sprayed all over Danny inside the "tent" he was in. He laughed and thought it was a nice shower...remember he hasn't had one in over 2 months since the LVAD. The nurse was really embarrassed and said she had never done that before. Then, when she went to flush it again the water went all down Danny's back like a bath. They just laughed and decided it was something cooky with Danny and that lab.

I found out something I am so excited about I just can't hardly stand it. We get to see his old heart!!!!! We can touch it and hold it. One of the pathologists will set it up so Danny and I can go. The transplant coordinator said that his first heart was truly amazing looking. It's about the size of a dinner plate and it a grayish, greenish color. She said when you look at it it's hard to understand how he stayed alive as long as he did. I am so excited about this "field trip" that I have butterflies in my stomach!! This coordinator (who is one of the most positive, uplifting, and wonderful people ever) also told us that Danny's new heart could not have been a more perfect match in terms of size, age, strength, and of course blood/tissue type. We are praying that the donor family will want to meet us and also that we will feel content if they do not. They have given us such an amazing blessing. 

Here's Danny all ready to go...real clothes, no needles or wires anywhere. Stay tuned to see whether we stay for hospital lasagna or leave for cafeteria something else...Or, we could get in a car and go to a restaurant. Yaaaay!! He will have to wear a mask the whole time except when he is actually eating. I saw a little girl a while back downstairs who was wearing a mask decorated with bedazzled jewels...I sure did have a lot of fun decorating his driveline dressings with the LVAD. I need to find a way to express my creativity in a way that he will wear on his mask!!

Quick nap before leaving...Lasagna or not? Big decisions :-)

We will need a cart :)





Monday, December 30, 2013

Still Here continued...

Today reminds me of why I learned when this all started to blog in the evenings because things change so much during the day!!

They did take the chest tube out today...yaaaaayy!!! He was draining still, but they felt it was enough to remove the tube. Also, when he stands up and moves around the fluid will come out of the hole until it heals shut. So now the only needle or tube in him is the IV that's in his arm for protocol purposes...it's not connected to a medicine. 

We will probably get the biopsy results tomorrow, if the lab gets to it. They are swamped since Wednesday is a holiday. Danny also has to have a heart cath again before discharge. So, the word is that discharge will probably be on Thursday...assuming all is well with the biopsy and cath and subject to change, of course!! :-)

We talked with the transplant coordinator for a long time this afternoon about the realities of life post heart transplant. As far as his diet goes, he will eat a heart healthy diet, but he pretty much did that before. Beef must be well-done...no pink at all. He likes his steak cooked medium, so he will have to learn to change his taste! No grapefruit, in any form, ever. It counteracts one of the immunosuppressant medicines. That's it as far as food goes!

He will wear a mask outside of the hospital room, hotel room, or home once we are back in Baton Rouge for at least the first six months. Sick people should not intentionally come around Danny for at least six months also. Obviously the kids and I will be around him since we live with him, but we will try to stay in a different room of the house as much as possible when sick. We will need to keep hand sanitizer by the door for any visitors, and not go in crowded places at peak times. Mostly it's all common sense stuff. In time, he will be able to do all of the outdoor physical activities he enjoyed before end-stage heart failure and get back to a fairly normal life! We are very blessed indeed. We are going to write a thank you note to the donor family soon. We were instructed to do it with no expectations from them. Some donor families want no contact. For them, donating the organ is closure enough. Other families want to communicate, and some maintain a lifelong friendship. My personal prayer is that the donor family wants to meet us and maintain a relationship. Danny hasn't completely verbalized his deepest wish, other than how incredibly thankful he is. At any rate, once our letter is given to them, the ball is in their court. If they have decided that they do not want to hear from us, I assume the organ procurement agency would not even give them our note...and that's okay! It's been said that the best way to say thank you to a donor family is to take excellent care of the organ we have received we will certainly do that! 

Danny was so excited to get out of bed and strut his no chest tube and no wire self around the room...until the pain hit!! Then he crawled back into bed doubled over in agony. Poor thing. It will be a long recovery but one filled with lots of joy and hope for the future!! He even put on a real pair of pajamas instead of the hospital gown! When I took his picture I realized he does have a few wires, but they're all external so I didn't think of them. The wires poking out of his PJ top are for the telemetry thing (heart monitor) he has to wear as long as he's in the hospital. 






Still Here

Well...We got hopeful too soon. Danny's chest tube drained over 80 cc this morning between 3-9 am. The nurse was quite sure that it drained out when he got up to walk or use the restroom, but it actually was before he had gotten out of the bed for the morning. Wisdom said to not try to explain that to the nurse because this one isn't a great listener! Anyway, he has drained over 200 cc in the last 24 hours...it just wasn't obvious to the nurses who chart the amount in the computer because they are not all recording the amounts at the three routine times a day like they are supposed to be doing. A nurse from the surgical team came up this morning to verify that the tube was ready to be pulled and was not happy when she looked at the actual amount of fluid in the box compared to what had been charted in the computer. As much as we want the chest tube out because it hurts so badly, it's vital that as much fluid be drained out as possible. Though the tube (connector) is not fully clogged, it must be partly because of the way fluid is constantly sitting in the tube rather than draining out completely. The surgery nurse saw the logic in that immediately and agreed that it doesn't make sense at all for fluid to stay in a tube unless there is some sort of clog. I don't know of they are going to change out the tubing or not. First step is to get them to accurately chart the drainage! 

Danny was scheduled for his daily chest x-ray this morning...he has one every morning as long as he has a chest tube to check for proper placement and fluid levels. His limousine (stretcher..lol) came to get him and it wasn't the x-ray techs. Instead it was the cath lab nurses. The doctors changed his biopsy that was scheduled for tomorrow to this morning. We were surprised but both a little glad (me more than him I'm sure) because that doesn't allow Danny much time to stress out over the biopsy. Heart biopsies hurt even when done by an expert! Needless to say, he isn't going to be in a very cheerful mood the rest of the day and he will sleep. The pain and stress takes everything out of him...

I don't know if they're going to do a chest x-ray or not. Since the fluid amount prevents him from having the chest tube removed today, they might as well skip the x-ray today, but who knows!! 

I took a pic of Danny pulling his morning meds and them all spread out. Then, he takes more throughout the day. I'm scared to see what insurance will cover. The anti-rejection medicines can run up to about $3000 per day. That's scary!! 
Pulling meds

This is missing 3 medicines...

I need to figure out medicare...Other transplant patients have told us to get started on all of that because medicare covers the amount of the medicine that his primary insurance doesn't. ...but they are on disability too. Danny will be going back to work full time and doesn't need disability. Trying to understand all of that and knowing where to go to get correct answers is overwhelming. Definitely a matter or prayer because I know that the Lord is able to guide us in the right place!

Danny just back from the biopsy and it was much easier this time...Danny still had the same complication (PVC...I don't know what that is other than it's some type of shock or nerve issue when they take the biopsy) but a doctor did it who has done thousands so he knew to talk Danny through what would happen and what it would feel like, so it was much more tolerable. Danny requested that doctor for all future biopsies 
:-)


Looking good after the biopsy today! 





Sunday, December 29, 2013

Probable Last Night in TSU

Being silly...

Having fun!


Danny's chest tube is only draining a small amount now, so we think he will be discharged tomorrow. Then we go to the Brenthouse Hotel (attached to Ochsner) for 6-8 weeks. 

The chest tube is hurting him a lot and I am so excited for how good he will feel once it's out! The chest tube has been doing something really weird today. The tube appears to be clogged because the fluid is visible in the top part of the tube, but after the connector piece there is no more drainage. So, the obvious conclusion is that the clog is in the connector piece. Well, it's not! The nurse took it apart today and flushed the connector with sterile saline water and the fluid is still not draining out of the top part of the tube (between his belly and the connector). Danny and I have decided that it's about pressure, not a clog. The chest tube is connected to a box that collects the chest fluid by using a water suction technique. If we squeeze on any part of the tubing, the pressure in his chest is horrible. If he breathes in our out with force, bubbles and fluid go up and down the tube...but only to the connector, and it hurts. If I put my ear to his belly near where the chest tube comes out, I can hear the fluid moving around. It sounds like a caffeinated beverage that's been shaken. He can feel the fluid fizzing around in there. I've tried to convince him to let me undo the top part of  the tubing from the connector and let it drain out onto a towel, but he won't let me. I think it's a great idea but he gets to decide since it's his chest tube!!!  I'm so excited to watch them pull out the chest tube tomorrow. 

I took a picture of the chest tube. You can see the top part of the tube, the connector, and the bottom part that attaches to the collection box. If you look closely, you may be able to see the fluid that's mysteriously stuck in the top part. It's really taking a lot of self-control to not pull that connector off and manually drain out that fluid!! I would definitely do it if it were my chest! 



Fluid stuck in the upper tube above the connector


The transplant coordinator explained the reasoning behind the chest tube to us the other day. It's really interesting. When Danny's first heart was incredibly enlarged, it pushed his lungs out of the way to make more space. Now that he has a small (normal size) heart, and no LVAD or pacemaker/defibrillator, there is a lot of empty space in his chest. Until the lungs re-expand to their normal size, his body produces fluid to fill up the empty space just because bodies don't like empty space. Pretty cool!! 


Finger dexterity therapy :-)

Looking Great!!! LVAD driveline exit site to (his) right of belly button. Other holes are chest tubes holes.

Some of the meals here are pretty funny!!

Thanks for reading the blog and for your prayers and comments. It's so encouraging to know that so many people are praying for us!


~Tricia





Thursday, December 26, 2013

First heart biopsy

The resident who was on call the first night Danny was admitted to Ochsner in New Orleans is who did the biopsy on Danny today. This resident, Sean, is really great and has been one of the reasons our experience at Ochsner has been so wonderful. However, Sean is a student, and students do need to learn somewhere! Unfortunately and fortunately, Danny has been the practice/learning patient for Sean during quite a few procedures and experiences over the last year or so. It's a good thing Danny really likes Sean! 

A heart biopsy is similar to a heart cath in that they go in through the carotid artery in the right side of his neck. A long tube is fed down through the artery all the way to the heart. The cath just takes pictures but a biopsy is taking a scrape or little chunk from the heart. 

Both of these procedures have to be done without any sort of sedation because the patient needs to be able to communicate quickly and clearly any potential complications...the carotid artery is not a place to be playing around in!! 

Sean begins the biopsy with the supervising doctor (Dr. Patel) watching (who has also been one of the cardiologists we've worked with throughout our time at Ochsner...after some point you feel like family!!). 

From Danny's perspective..."Lab techs get me straight, pumps right, put me on table, elevate feet a LOT, put me in a tent." This whole time Sean is saying "Oh we gotta do this..." and the lab techs are correcting him. Sean is remembering from what he learned in a textbook, which is not always exactly what real-world is.

They start doing the ultrasound and getting all measurements taken care of. The lab techs who always work in this lab know me and know how much I hate right heart caths...they know how anxious I already am and now that I realized Sean is doing the procedure, my anxiety level shoots even higher. I can't be knocked out, so they do Lidocaine. They position my neck just right and then they put the tent on. The textbook doesn't say how to put the tent on just right because they differ depending on the manufacturer. This ones window has a lot more adhesive, so he plastered the whole tent to the side of my face and head. The tech corrected him and told him how he was supposed to not take all the tape off because the tents have so much glue. Sean got numbing medicine and told me to tell him when it still hurts. The rule is when I'm in pain I'm supposed to tell him, but I'm glued inside a tent with machines humming. The thing is clamped on wrong and glued on my face and they can't really hear me talk. I'm told to tell them if I can feel anything. They said "this is gonna hurt, here comes the sting", and I feel a lot of water...I'm thinking they cut my jugular and Sean said "oops." Instead of injecting me with Lidocaine, he injected me with a flush, so water went everywhere. "Sorry...wrong one, let me try that again." It's usually a little prick, like a yellow jacket sting, that eventually goes away. But this was not like that. Patel said if you felt that then at least we are using the right medicine instead of a flush. Somewhere in all this everyone thought we were good to go. Sean is to go down in through the incision he just made with a tube and camera down into heart so the person doing the ultrasound can do what he needs to do. I remember them telling me to say when it hurts and I've been saying "yeah, it still hurts!" Sean tries to put in more Lidocaine and Patel says "make sure you are watching the monitor and go with what you see on the monitor and not what you think." The next thing I know is I got punched in the face. I kept saying "yeah that hurts, yeah that hurts", but I stop talking after the punch. The lab tech asks me if I'm still hurting and I say "yes". Patel asks if he's right or left handed and Sean says left. He's going in my neck from the wrong direction so they have to start over. So, I'm thinking, "Oh man....this has hurt the whole time and I've been saying so, I got punched in the face on purpose, and now we have to start all over..." Patel gets Sean back on track and they say "ok you're gonna feel a lot of pressure on your neck." It does...my jugular feels like it's being smushed and the tech looks like she feels sorry for me. After many attempts, Patel says it's all good. They start talking about injecting dyes and what they see on the ultrasound machine...Sean is learning the old way of looking at an echo with bubbles and the new way with dye. Patel always uses the old way with the bubbles and the new way with the dye so he doesn't miss anything. He said sometimes the dye masks something important so he always uses the bubbles too. They took measurements and pictures of my heart. I'm still thinking "I couldn't have been punched...something fell on my tent, nobody's screaming so everything must be ok." Sean says "so now I do this?" and the ultrasound tech asks him "did you just ask that?" Patel reminds him that he needs to go in straight because he only wants to do this once. "Do you see it, do you see it? You're going in crooked, stop! Straighten up." Now I'm scared because it hurts and I don't know what's going on. I felt three different things inside my body. The tech had created a little hole in the tent so she could see me and I'm saying "Ow! Ow! Ow!" Patel says "That could be a complication, so stop." I'm thinking "oh no! This is a brand new heart and I have a complication already." Patel took over and said "You feel that?" I said "Yes, but it's not as bad." He had to start over. The three things are three cuts on the inside of my heart. I'm saying "it hurts" but Patel said "we have to do it again because I need to know exactly where it starts hurting because this may be a potential complication." Patel is giving me the steps we are going to do and I'm to tell him when I feel something. I say "it feels different." So he does it again but it does not feel like the same three things. Patel tells Sean the three things i feel must be a PVC..I have no idea what that is. But it's something they have to watch in the future because it may be a potential complication. Patel left and Sean started to do all the post-op stuff of getting tubes out of my neck. The tent is glued to my face. The techs can't really oversee what he's doing because they are looking through a small hole. The tech says "ok he's bleeding now." Sean says "that's not new blood" and she said "yes it is. Did you nick him or something?" He said "Well maybe I did during the PVC or something." They're looking and trying to figure out what to do about the liquid stuff I feel on my neck. It really hurts because they're pulling things out of my neck, and it feels so wet. Sean has to put pressure on my neck to stop the bleeding but he has to take the tent off first. "Ok Mr. Sauer, this is gonna hurt to pull the tent off because it's glued too much to your face and neck." It sounds like I heard them say the sutures from the swan (hole in the carotid) from the other day got pulled out with this procedure. So Sean is leaning onto my neck to apply a lot of pressure to stop bleeding. Patel comes back into the room and asks what they're still doing. Sean says "I think there was a problem with the first suture because it came open, so I'm trying to apply pressure to both openings." After what seemed like 15 minutes of Sean standing on my neck, he pulls the dressing off and the nurse says "that's still blood." Sean says "no, it's just old blood." He starts scraping my neck with gauze and it hurts so badly. The nurse says "Doc, that's blood...he's bleeding, you gotta keep the pressure on!" Patel comes back in and explained that "we could have waited until Thursday to do this procedure but I wanted to go ahead and show you the outpatient procedure for biopsies because you will have these weekly for a long time. I want you to start feeling more comfortable with the procedure. (hhhmmmm) I need to practice this PVC thing because it's a rare complication that we don't see often. The next time we do it we will talk about what we are going to do and I'll know to talk you through it and tell you when it's going to hurt." Patel is ready to move on to the next patient but they're still trying to get the bleeding stopped on my neck. Now I have two pressure dressings on my neck. I ask the lab tech if it's over and she said she thought so and to just relax in the dark for a minute. Sean comes over to help the lab tech (because he's a super helpful person) and starts taking the arm boards off. The tech starts fussing at him because I'm still on the table and I would fall off without the boards holding me on. I teased him some and the techs gave him some paperwork to do to get him out of the room. Patel came back into the room and said "Boy, that was really something huh?" I asked "how often do I have to do that?" He said "oh, we will do that once a week, but don't worry we'll get better at it." He offered to take me back up to my room and the tech said "No, I got this." He said "I want to go talk to his wife anyway" so Patel takes the front and she takes the back. We were all joking about him being drunk because he was talking and swerving and moving people out of the way. Doctors we pass in the halls say "oh man, you're out drinking and driving again!!"

I get back to the room and all I could tell Tricia is that I got punched. I don't think she believed me so the next time Patel and Sean came in my room I asked them if I really got punched during the biopsy and they laughed and said "Yes, you sure did! I sucker punched you to get you to be still!" 

Needless to say, Danny is not looking forward to the next biopsy. I've watched Sean learn (on Danny) through successes and mistakes for a long time now, and I think he is the most humble student I've ever seen. I know that Danny has certainly felt pain through Sean's learning, but he's handled it with grace and kindness. It's been fun to watch Sean learn how to do all of the procedures transplant cardiologists do. I wish more people learned from their mistakes and accepted positive criticism as well as he does. His future patients will be fortunate to have him as their doctor! 

Danny and I finally learned what the deal with with chest tubes. Danny's first heart was incredible enlarged and grew vertically and horizontally. To make room inside of his chest cavity for his huge heart, his lungs were pushed to the side. Now that he has a heart that is the perfect size for his body, there is a LOT of extra space. It takes a while for the lung tissue to expand back into its proper place. Until then, the body doesn't like empty space, so it fills up that space with fluid. That's the fluid that is draining out of the chest tube. The last chest tube is still draining so much because that's how enlarged his first heart was...Sometimes they take out the chest tube and just let it drain out onto a dressing. I know that would feel better...but they're going to do whatever they think is best. Currently Danny is away having a chest x-ray to see where the chest tube is. It's probably moved since the surgery and that may determine whether they take it out now or continue to let it drain. 

I think that last chest tube is the source of most of his pain...so letting the excess fluid drain out onto a dressing would be a blessing for him! 



If they don't take the chest tube out today, we should be discharged to the hotel Monday. If they do take it out today...maybe tomorrow?? 

I've never been the type of person who is super traditional about holiday meals. I've never wanted to be in the kitchen a long time and plan a big, fancy feast. I think that's been something that has maybe made the kids sad over the years...but it still wasn't something I wanted to do. It's been okay anyway because we usually go to some family member's house for the feast. 

This year, as Danny and I are stuck in the hospital over Christmas, I've really missed the festivities. My dad brought the kids to the hospital on Christmas and it was so wonderful to see them! I cried as I watched them leaving...that's sort of out of character for me too. Something in me has changed and I am so excited to cook huge feasts and make a big deal out of every holiday from now on! We should never take one day for granted and definitely make the most of each one we are blessed to have. 




We have been paying on the medical bills as they've come in with the money we have saved and has been provided. The expenses will continue for the rest of his life in the form of anti-rejection medicines, future routine check-ups, and potential diseases/illnesses that come with a suppressed immune system. If you feel led, you may donate through:

Paypal.com 

click on: Transfer, send someone money
email: helpdannysauer@gmail.com


Thank you for your prayers and support! God Bless You!



Monday, December 23, 2013

One week since the call


Today is exactly one week since the call that a heart was available. The change in Danny's appearance is absolutely amazing since surgery! His color looks so good that Maggie told him she thinks he's secretly using tanning spray when no one is looking!! :) I put my ear to his chest and was absolutely blown away at how big and strong his new heart beat is. Praise God for amazing healthcare…the average life span of a heart transplant is 12 years and just a couple of years ago it was 6 years. That 12 year number doesn't settle well with me. Danny's only 38, so 12 years is 50 and that's pretty young still!! We met a couple recently in the lab (it's amazing how many LVAD and transplant patients you routinely see in the local lab!! It's like the corner coffee shop for sick people. lol) and the man has had his new heart for 17 years so that's pretty encouraging. I've had other people tell me wonderful stories of heart transplant patients who have lived much longer than the "average"…so that's what we are trusting the Lord for. That being said, I want it written down in case I have to reference my own words one day that I believe and trust that God's timing for our last breath is the perfect timing and Danny's last breath on Earth (whenever that is many years from now) will be his next breath in Heaven…and no matter how sad that feels to those of us left on Earth…it's still cause for celebration! Enough of that….

Tomorrow Danny is scheduled for a heart cath and a biopsy. I assume they can get the biopsy at the same time as they do the heart cath because I know the cath goes through the carotid all the way down to his heart. A 2 in 1 procedure!! The biopsy is checking for any signs of his body rejecting his new heart and the cath is checking on how the heart is doing. Assuming both of those tests are fine, he should be discharged from the hospital either Friday or Monday (the never discharge heart patients over the weekend). After discharge we are required to stay in New Orleans within 30 minutes of hospital for 6-8 weeks. Ochsner has some apartments reserved for transplant patients but they are currently full. There is a hotel connected to this hospital that we will stay in since the apartments are full. The apartments are much cheaper than the hotel, but we will be able to stay in the hotel for the same rate since the apartments are full. That's a blessing because we would have to bring linens, kitchen stuff, etc… to the apartment and I didn't want to have to deal with that.

I'm just so amazed at his progress. He is in so much pain that is completely understandable, but he doesn't let him stop him. When PT or OT come in, he just does what they say without complaint. You can see the pain in his face, but he doesn't quit. I'm so proud of him!! I'm so proud of how hard he is working to get stronger and better so he can get back to life!! 

They've increased the doses of his anti-rejection meds. I didn't know that anti-rejection meds are steroid based but it makes sense. Every day and throughout the days they change dosages of the steroids based on labs and they are continually adding other stuff. Today they added some sort of medicine to prevent some type of eye disease. I can imagine the frustration of some that I don't know exactly what all the meds are treating…but I'm telling you there are a lot of medicines going into his body and I can't possibly keep track of them all.

Danny is not looking forward to the heart cath and biopsy tomorrow…he's sick and tired of being poked and prodded, but good test results tomorrow will result in his last IV coming out. yaaaaaay!!! He has one chest tube left and as soon as it stops collecting fluid (more than 150 cc in 24 hrs) it will come out. Then a shower won't be far behind. He's going to be soooo excited about that shower! 

I keep thinking about how the medicines do weird things to his sleep. I wonder if a sleep mask would help him with lights bothering him and I'm also wondering if one of those sound machines that play water/wind/etc…would help. Do men ever wear eye masks and listen to soothing sounds during sleep or is that only a girlie thing?? Can I overcome the nighttime medicine-induced "hallucinations" with an eye mask and sound machine? hhhmmmm…Maybe a little lavender scent for relaxation!!! Sounds delightful to me!

The cafeteria people don't do a great job of giving the patients what they ask for. The patients get a menu each day on which they are supposed to circle what they want for the next day. Rarely is it correct. It's strange. But today was just hilarious and worth a picture! 
That's all that was on his tray for lunch. They forgot the entree!! Danny did a double-take and wanted to know where I hid his food. It was pretty funny. Good think his appetite isn't back to normal yet and a side salad and jello was enough! 


Danny could totally be a commercial for a Sonicare toothbrush. He loves it and can easily brush his teeth even right after open heart surgery because the toothbrush does all the work! It has a timer and makes a little sound or vibration variation when it's time to move to the next area of teeth and gums to clean. When he first got the toothbrush, he made the kids stand next to him and brush their teeth next to him and they couldn't stop until his automatically shut off. It was pretty funny…both kids think Sonicare is pretty hard core. Good stuff. I hope they're excited when we get them their own. If they use it as directed I bet they sure won't have any oral hygiene issues!










Sunday, December 22, 2013

Together Again

It's Sunday (12/22)...Danny had the transplant early Tuesday (12/17) morning. I got a sinus infection and had to stay in Baton Rouge on Thursday...so we are both so happy that I'm well again and back in New Orleans. 

Today he has one chest tube in and one IV...yaaay!! He still has the leads in for the external defibrillator...but hopefully those will come out soon too. We don't want him to need a defib!



Danny says he's seen every kind of doctor possible...and though I'm sure I can think of a few types he probably hasn't seen, I know they are trying to cover all their areas of potential concern. A transplant patient is at high risk for contracting illnesses and diseases because of their suppressed immune system. The amount of steroids Danny is like what steroid addicts dream of (according to the nurses). Last night it appears that the vein his IV was in blew out because his wrist and hand is super swollen and the bruising is pretty significant. The nurse quickly moved the IV to his other wrist. 

Swelling has already gone down a lot...but still pretty puffy!
The side-effects of that much steroid use are many, but one that Danny is noticing already is bizarre dreams that might be considered hallucinations. For example...Danny says every night he thinks the urinal next to his bed is our dog Snowball and he talks to him. The nurse comes in and checks to see what's going on with Snow when he hears Danny start talking! I'm excited to hear about his crazy dreams now that I can stay with him through the night. 

One of his nurses has told him two times now that he is the reason why doctors and nurses come to work...a patient who does what he is told, works hard, and is pleasant to work with. What a wonderful compliment!! 

He made a lap all the way around the circle of the transplant unit today and is definitely in the bed resting now!! He was told today that a shower won't be too far in his future. I know that's going to feel so great as he hasn't had one since his LVAD was put in on 9/5/13. 

Danny is being trained to take (some of) his medicines...ones that he will take for the rest of his life that can cost around $3000/month. Prayerfully our insurance will cover the bulk of that! Anyway, the meds he is learning to take right now are in a locked black box. The medicines are separated by type into ziplock bags and there is a printed out form with a table of times and doses. They are having to change the doses of many of the medicines constantly as they see how his body is responding. Apparently every person reacts to the anti-rejection medicines in different ways. The constant is that these medicine cause significant mood issues. We are told Danny will feel fine one moment and the next have a complete meltdown...I bet there are some sympathetic women out there!! Over time his body will become used to the medicines and the emotional stuff will settle down. As far as a steroids go, right now his body isn't liking the steroids and it is trying to fight back. The solution to that is increase the doses of the anti-rejection medicines. The nurse described it as they are having to bully his body into submission by steadily increasing the doses of the meds until his body submits. Pretty wild and still just unbelievable. I mean seriously...I know for sure that clearly God knows that Danny and I can handle this because He is allowing us to walk through it. I know that because the Bible says it's true and I believe the words in the Bible. But if I stop and think about what is really happening to my husband I feel like I'm having some kind of out of body experience. Sometimes I hear people say that I'm strong or brave or something and I'm no so sure. I think we can just chalk all that up to the Holy Spirit that lives inside of God's children. I'm just me. Tricia. 38 years old. Brand new teacher of 1st graders. Wife of 18 years. Mom of 2 great kids. Sister. Daughter. Aunt. All of those things are completely believable and I can handle. This whole heart failure, LVAD, and now transplant thing is still just unbelievable. I can't even think of a better word. I'm not angry and not necessarily scared. I know that God loves us and wants what is best for us. I know that our days are numbered and I know what our eternity holds...so I don't live my life in fear and I don't think Danny does either. Sometimes I feel numb and other times I want to crawl into a ball and cry. Mostly, I just enjoy taking care of Danny in whatever capacity that looks like. I love teaching, but I think I would have loved nursing even more. 

Sometimes I get messages through facebook from people I've never met, but who have been following the blog. I've also heard from friends of mine about people they know who are following Danny's story through the blog and they feel connected to us and are faithfully praying. I just want you to know that we appreciate you and are so humbled by your faithfulness to pray for us. It's definitely the most important thing we need and God has been and I know will continue to be faithful to meet our needs. It just touches my heart to know that there are people that we don't know personally who care enough to pray. Thank you!!! 
These are only the meds that Danny is pulling right now. The nurses are pulling all of the other ones still. They train a few at a time to try not to overwhelm the patients and/or caregivers. 

Danny's locked medicine box
The meds and card with medicine schedule
Tuesday Danny is scheduled to have a heart biopsy done, which is similar to a heart cath. Not very pleasant but also not the worst he's been through. They are looking for possible signs of rejection. 


Saturday, December 21, 2013

Day 5

Danny is in the transplant step down unit and is recovering well. That doesn't in any way lessen the pain he's in however. He told me his nurse today likened his pain to six gun shot wounds in a straight line across his abdomen (one hole where the LVAD exit line was and five chest tube holes from the transplant surgery). That doesn't even deal with the incision going from his neck straight down to his belly button area, and cutting through lots of muscle and even more scar tissue. Geez...I whine when I have a smashed toe!!! 



The nurses are training Danny on how to take his meds. I haven't been at the hospital with him since he's been doing that (stuck in BR with a sinus infection), so I'm excited to learn also. 

After surgery at some point they point an external defibrillator and pacemaker on him and took that off today. They were supposed to take the central line out of his neck today and I think he only has one more chest tube left in. His mom reminded me that one week ago today his parents and sister were listening to the hum of his LVAD with a stethoscope and today he has a real beating heart!! That's awesome...in the truest sense of the word. 

Sister listening to LVAD one week ago
one week later, a real beating heart!!

Danny told me that the nurse in the ICU gave misinformation and I'm glad. He can eat raw fruits and veggies, they just all have to be washed very carefully to clean off any bacteria or pesticides. 

I'm so excited to be able to go to the hospital and stay with him tomorrow. I will have to wear a mask if I feel any symptoms returning. He has to wear a mask if he ventures outside of his hospital room...not that he's wanting to venture anywhere right now!! 

Thanks for praying...we know many people are and it is through the strength of the Lord that we are able to deal with all of this so keep the prayers coming!!


Friday, December 20, 2013

moved to step down unit!

Very sadly I caught a terrible sinus infection and decided it was best for Danny if I stayed in Baton Rouge until I felt better. I have been home Thursday (transplant day 3) and Friday (day 4) and it is soooo hard to be away from him. I do understand that he is well-taken care of by the staff at Ochsner, but I miss him and I miss caring for him. He is also more relaxed when I'm there. However, we both agree that he cannot be around potentially contagious people with a suppressed immune system. I'm on some pretty good meds now so I anticipate being back at the hospital with him Sunday. Yesterday (Thursday--day 3), three of the chest tubes were removed, leaving two. His incisional chest pain is excruciating and is worse than the LVAD post surgery pain. This is because more of his muscles were cut and a large amount of fresh scar tissue was cut out. Since it has only been a couple of months since he had the LAVD implanted, the scar tissue hadn't begun to soften yet. Other than that pain, Danny is doing really well. His kidney is still in failure, but the number the doctors watch for that is steadily decreasing...which is a good thing. 

His parents and sister drive down after work in time to see him for the late shift... and I am really grateful they are going everyday since I cant be there.


Day 4 (Friday)
Today Danny was moved to the TSU, (transplant stepdown unit). They took another chest tube out, which leaves him with only one...That's great! He is tired and still misses me. He still in a great deal of pain, but that's to be expected. His mom said he loves feeling his heart beat!! 

He can't eat raw fruits or veggies because of the potential bacteria he could encounter. That's going to be sad...hopefully that's just for a time and then we could just wash everything really well. But of course, whatever we need to do to take care of him we will gladly do!!

I'm told his color looks better...he was a little pale and maybe yellow. 

I've got to get together the things we will need when he is discharged from Ochsner but we still have to be in New Orleans at an apartment two blocks away or the attached hotel. The social worker told me the apartments are currently full so she has us on the waiting list. If they are still full, we would stay in the hotel for the apartment rate. The apartments are basically furnished.  Two queen beds and we bring all linens. We bring all cooking supplies. There's a couch and table..but no utensils or anything other than basic furniture. The hotel is just a regular hotel room. It has a microwave and a small frig I think. 














This is the step down room. His mom just texted me and said they are training him to take his medicines. That's intimidating because with the LVAD he had 18 bottles lined up on the counter...and no training (just discharge instructions). What in the world will it be like if training is necessary??

From those two pictures, it looks like he shaved today. The OT and PT ladies are really nice and really pushy!! He realized a long time ago that it's easier to just do what they say quickly so they go away happy than to try to argue or complain...He does all sorts of hand therapy to regain finger dexterity since he's a software developer. But even simple things like putting on pants and brushing teeth are difficult for a person who recently underwent open heart surgery... 
Watching Danny try to eat soup is downright funny. His hands shake so much all the soup is gone before he gets the spoon in his mouth!! Hopefully the terrible shaking is better with a real heart rather than a mechanical one. 

I'm so excited to see him Sunday!! Please pray that my congestion is completely gone tomorrow so I can have my one day congestion free before I go back to New Orleans. 



Wednesday, December 18, 2013

NEW HEART DAY ONE!

Danny came through surgery great!  As he woke up, still intubated and a bit confused, he was gesturing trying to ask if surgery had happened.  We couldn't figure out what he was trying to say so we gave him a pen and he wrote the word "stitch" on it... it took 4 college educated people to figure out that he was asking if they put a new heart in. The look of joy on his face was amazing but he went straight to patting the side of the bed and we new he was looking for his constant companion of the past 3 months, the LVAD controller and batteries.  When we told him it was gone he looked even happier and then he patted his chest, feeling for the bulge and tenderness of the defibrillator that has lived in his chest. "Gone!"  At that point, he did the ICU happy dance!  It's a little different from his usual happy dance, but can I tell you it was precious to see!!! 

 
 
I'm not sure if this video will work...If not I will get someone to help me make it work because it really is worth seeing!! He's gotta be the only person on a ventilator trying to dance!!!
 
He was still on the vent for a while more awake than what seemed appropriate. His nurse fought for him and called the doctor several times to tell him Danny either needed to be extubated or sedated. Thankfully, when the docs were satisfied with lab values, they extubated him.  With barely a whisper he called and spoke to the kids saying, "Maggie, I love you; Charlie, I love you".  Then he whispered to me, "I love you Trish".  I told him I loved him and he said, "No, I really love you."  I told him I really loved him too, then he said, "NO!  I LOVE YOU WITH ALL MY NEW HEART!"  That's when I burst into tears...Then He teared up a bit and asked how he could thank God for this blessing when words are not adequate. I reminded him that God already knows what's in his heart!! One day I hope we are given the opportunity to thank the donor family. Organ donation is a priceless gift!!

This is a picture of Danny before and after transplant.


That's some serious contemplation going on. I don't remember if I already wrote about this but the time leading up to transplant time was strange. I was sitting with him and we were both pretty quiet. We talked some and prayed but mostly just help hands. I was feeling like I was in a prison movie with a death row scene...like Dead Man Walking. The inmate is sitting there watching the clock tick slowly by and the people around him doing the things on the checklist that must be done before the big moment. That's what it felt like--not that I felt strongly that he was going to die...just the severity of removing a vital organ and putting in a different one. There was no way I was going to share my feelings about death row with Danny because it didn't seem encouraging or really appropriate in any way. But get this...The nurse came back in and Danny said, "You want to hear something strange? I think I feel similar to how an inmate must feel in his last minutes on death row." I was shocked and said "No way!!! That's what I was feeling too!!!!" 

Weird coincidence isn't it??!!
 
Day 2
 
Danny was in the chair all day. He was absolutely exhausted and in severe pain...to be expected. The surgeon said Danny still had a LOT of scar tissue from the LVAD implantation. It takes a couple of months for scar tissue to start to soften after it's formed, but Danny didn't have the LVAD long enough for the scar tissue to soften (Praise God!!) So, cutting through and taking out that scar tissue was difficult (according to the surgeon) and he knew it was going to hurt. I know that Danny feels like the added pain of excessive scar tissue is worth getting his new heart sooner than later!
 
When he had the LVAD put in, the recovery was difficult and painful...and he was severely anxious and depressed also. This time, the recovery will be difficult and painful but he is just so joyful! It's truly miraculous to watch the whole thing. God is so good!
 
 
With his LVAD Danny had 2 chest tubes postop (the chest tube allows the excess blood to drain out of the chest cavity). With this surgery he has 5 chest tubes. It's really unbelievable looking. It's clear rubber tubing, probably an inch in diameter coming out of his abdomen. They stick up into his chest cavity and drain out into measurable containers that sit on the floor.
 
 

 
Danny was relieved to get back into bed at the end of the day. He was completely exhausted and praying for some good sleep. Sadly, I'm not allowed to stay in the ICU with him overnight after transplant (I was after LVAD), so I won't know until the morning!!
 
Thank you for your continued prayers. We have a long road ahead of us...but it will be filled with joy and thanks and love!!!
 
 
 
 


 

 

Tuesday, December 17, 2013

Transplant Day

Wow...the day is here and even though I'm sitting here in the hospital, I still can't believe it. Danny got the call from Ochsner about 3:30 Monday afternoon and jumped in the car and headed toward New Orleans. His family and I followed him a little later. 

Danny was put in an ICU bed/room to wait for the heart to arrive and surgery to begin. His transplant is more complicated than regular ones because he has the mechanical heart pump (LVAD) attached to his. The pump must be removed before the transplant process can begin. 

The nurse told us that the surgery was scheduled to start between 11:30--midnight. She said the pre-op stuff would start at 9:45. He had an enema, a sterile bath, and brushed his teeth. Then he laid back down and continued to wait. I was thinking that it felt like I was in a prison movie about "dead man walking" on death row. Just sitting there thinking, praying, contemplating, last minute talks/information feels very strange. I didn't dare mention my "dead man walking" feeling to Danny because that just doesn't seem very comforting and encouraging but the unbelievable happened!!! He asked the nurse if she wanted to hear something weird and then went on to tell her how he felt like he was an inmate on death row forced to face a countdown and the very serious issues related to that. I still can't believe that we were feeling the same thing!!!!

The pre-pre-op procedures in the room went fine and then three doctors came to whisk him away. He was trembling and I hated to leave him. 

The surgery will last at least 6 hours. He will recover in the ICU for a week or two and then go to the transplant step down unit for a week or two. Lastly we will go to an apartment or hotel near the hospital for about 6-8 weeks while he recovers at a safe (meaning close!!!) distance from the hospital. 

Maggie and Charlie will go to school because they both start mid-terms tomorrow (today). We can't forget to pray for them because this is suuuuper hard on them. 

Maggie turned 14 in September shortly after Danny had the LVAD placed. We had her birthday party at Ochsner so Danny could attend. Get this... Charlie's 12th birthday is on Wednesday (12/18) and if we have a party it will be here at Ochsner's just like Mags. I bet not many families can boast of that accomplishment!!

Gonna try to get a little sleep. It's 2:52 am now...

O geez. I thought I posted before I fell asleep but I didn't. Now its 5:57 am, Danny's still in surgery, and this waiting room is filled with people who just got here and appear to be sleepy. Hhhhmmmm...I"ve been sitting here all night! 

When he had the LVAD put in, Danny had 2 chest tubes (a drain tube that sticks down into his chest cavity through a hole in his abdomen and drains blood or other fluid out into a measurable container. We were told he will have between 5-7 drain tubes for this surgery. Those aren't comfortable! 

I will update again when I have news from a doctor.





Thursday, December 5, 2013

Exhaustion

It's been a while since I last posted...the words that quickly to mind when I think about our current lives are exhaustion, unbelievable, and survival mode. This blog was created to keep those interested/concerned about Danny updated so I want to try to keep focused on him. However, I've recently realized that the reality of Danny being in end-stage heart failure & being kept alive by a mechanical pump does not feel like the most stressful thing in my life right now. I'm ashamed to even admit that because clearly there is something seriously wrong or unhealthy about that. All that to say, to keep the transparency in my thoughts/feelings flowing in this blog, I really have to write about me also. I'll start with Danny. He's been home for almost 2 months now and has had ups and downs. It's hard to remember how his energy level was compared to now but I'm pretty sure it has increased. He is still completely exhausted by the end of the day. Usually he plugs himself into the wall and goes to bed by 8:00 at the latest. It never fails that he needs some water, chocolate pudding, his phone, etc...after he's already plugged in and can't get that stuff for himself. he doesn't use a bell, but it's pretty close. We went to the LVAD support group at the hospital in November and I discovered that all of the LVAD patients get really tired by night and go to bed early. It's a good thing they all have a care giver to take care these nighttime needs!!

Though his doctors cleared him to return to work (because he's a software developer and therefore sits at a desk), Danny's work hasn't let him return. It's a little hard to understand because the typical employer would want their employee at work ASAP. Danny's company is amazing in that they genuinely care about him and want his health to be the priority. They do not want him to overdo it and are just overall worried. All of the emergency responders in our home area have been trained on how to care for an LVAD, and Danny's work wanted the EMS by the office trained as well. On my fearful days, I worry that maybe they won't ever allow his to return to work, but that's not true. They really care about him and their kindness and support has been overwhelming because it's so much more than a typical company would do I think. They bring us food, visit the hospital in New Orleans when Danny is admitted, do laundry for us (I know---it's amazing!! One of Danny's coworkers lives near us and is the one who drops off food or whatever the office sends. When she was here one day she saw the laundry piled up and took it home with her. How do you express gratitude adequately for something like that? I don't even know her well)

On a routine basis Danny's cord gets stuck on the corner of the bed or cedar chest when he gets up to use the bathroom through the night. It makes him feel crazy for his lifeline to be stuck. He doesn't have an actual panic attack...but I could see him going that far if we were not able to get him unstuck quickly.

His driveline exit site looks good. It's really cool how his skin has begun growing onto the cord thereby making it water-resistant at some point. (that's when he will be cleared to take a shower--with a "shower bag" for his computer and batteries and "saran wrap" (according to the nurse...I'm not sure if she was serious about that or not) wrapped around his abdomen covering and sealing in the exit site). Bacteria going into that hole would have a direct line to his heart which could be fatal.

The last couple of weeks he has urinated blood, coughed up blood, and had many bloody noses. Apparently these are rare, but possible side effects of an LVAD. I think Danny has had every unusual issue an LVAD patient could have.

Today the transplant coordinator from Ochsner called and asked permission to move Danny to 1A status rather than 1B. Remember he was 1A prior to the LVAD at which point he dropped to 1B. Someone with end stage heart failure is more stable with an LVAD than the heart failure patient with no LVAD...hence the drop to 1B. Apparently even though Danny is 1B with the LVAD he has 30 days he will be moved up to 1A. The lady called to say now is a good time to put him on 1A. I didn't ask but I'm guessing right now is his best chance for getting a heart because holiday time is upon us with lots of drunk drivers. That's such a sad, hard reality. We were told he is on high alert and to definitely have our phones on and close by at all times. The good news is that I don't really have to wrestle with the conflicting feelings associated with being a heart recipient. God already knows Danny's future and has promised that His plans are for Danny's good, not disaster. It's important to remember (should God's plan for Danny differ from our plans for him) that physical death and eternal life counts as good...not disaster!

I'm back at work until transplant. I started teaching (elementary) last school year in November so that makes this my second semester teaching. It's so hard! You would think that 1st grade material would be pretty easy...but that's not always the case! The paperwork associated with teaching is more that I could have ever imagined. I'm completely bogged down with paperwork and data that most of the time I feel like I've spent more time doing that stuff (no direct impact on students) than I spend developing effective lessons (100% direct impact on students). I routinely work 15-20 hour days and even then I  feel ill-prepared. It's frustrating and disheartening to have a mental picture of what a person or situation should look like, but consistently fall short of that standard.

A couple of days ago I spent some time crying on the phone with my mom. Sometimes a good cry is so therapeutic! She asked me if I felt more stress from Danny's heart failure or my job. As unbelievable as it is, I feel like it's the work. I tell myself that can't be true because that clearly represents misplaced priorities, but I think it's true. The last time Danny was admitted I remember not being happy with myself because I felt physically more relaxed than I do at home. I'm not even going to try to analyze all that but I can easily say that I think something is definitely wrong with me!)

On a positive note, my administration at school is amazing. I can't imagine a more supportive environment short of working for Danny's mom...which sadly I'm not allowed to do since she's the principal at her school.

It's pretty awesome that both of our employers are so wonderful! God's timing is also awesome! This week has been exceptionally difficult for me--stress, work, lack of sleep, the list could go on...Several old friends, who I don't talk with regularly, have contacted me because I've been on their heart so much lately and they've been praying for me. Only God can have people reach out to each other with such perfect timing!!! When I feel like I'm drowning it's nice to hear (I know, but it's still nice to hear) that people care.

When I slow down a bit, I consider the very real possibility that Danny's chest could be re-opened, his heart cut out, and a donor heart put in. To be very honest, all of that makes me feel ill. I just can't even imagine how he feels. The stress here is a little unbelievable. This morning a one point we were all four yelling (it's all OK now). I'm so sad that the kids have to experience this type of stress in their lifetime. Prayerfully they learn God's faithfulness, peace, and joy through times of pain. It's one thing to read about God's faithfulness in the Bible but an entirely different thing to learn is through personal experience. Those are good lessons that will serve them well throughout their lives.

Thanks for praying and loving us!