Upset Stomach Still

Danny was discharged this past Friday after the GI and Infectious disease docs felt comfortable that they had ruled out or at least submitted the blood work for bacterial infections. They feel like it must be a virus that will need to run its course. The heart transplant team now believes Danny's body is rejecting one of the anti-rejection medicines. He has had some stomach problems each time they've increased the dose of this particular medicine, but nothing like what he has been experiencing the past few weeks. The onset of the severe diarrhea began about the same time he was completely weaned off of pain medicines. We didn't realize that connection until this past hospital stay. Apparently narcotic pain medicines have a natural side-effect of causing constipation, which counteracted the diarrhea. Crazy!!

The plan is to taper off of the Cellcept for a little while and then give him a huge dose when the doctors (more likely the clinical pharmacist) say it's time. They explained it to Danny like shocking a swimming pool with chlorine. They will try to shock his body into submission. I don't know what the plan would be if his body continues to reject (by getting rid of) the important. As far as I know, there isn't an alternative to this particular medicine. 

It's Tuesday night, and I don't see an improvement in his diarrhea yet. He appears weak and tired to me. I don't see how he isn't completely dehydrated. At one point he was told to take Metamucil, but he needs to call the nurse to find out how much to take. 

It's hard to watch him feel so yucky. He had blood work done today and I don't know the results yet other than he can go down a little bit more on the Prednisone. That's great because they want him completely off the Prednisone before doing the hernia surgery, which will hopefully be in December. 

Not in Rejection

Great News....Danny's biopsy showed no rejection at all! The surgeon had trouble getting to the right spot during the biopsy and couldn't figure out why, so she ordered an x-ray. She discovered that his hernias (yes, plural) are pushing on his heart and moving it up some so she had to readjust her aim in the biopsy. Hernias pushing on his heart might explain the shortness of breath he has been having lately!! I don't know of a change in plans for dealing with the hernias...wait until closer to Christmas to do surgery so I'm out of work and hopefully Danny will be weaned off of Prednisone by then. Which leads me to the potential problem...the doctors (transplant team, GI team, Infectious Disease team) think that Danny either has a stomach virus or is having a bad reaction to the CellCept (lifetime immunosuppressant medicine). They believe they've ruled out a bacterial infection because nothing has showed up positive in the bloodwork so far. It could be a virus because he is so susceptible to catching anything. He could of caught a virus that I caught from one of my students and I didn't even feel a symptom. With a suppressed immune system, the smallest bug that he would normally never get sick from can make him extremely sick. Right now the GI doctors feel like its a virus and the transplant team think it's the medicine. The plan (as far as I know) is to treat it like its a medicine complication and switch some things around. I'm not sure what they will do since Cellcept is a necessary thing and increasing the doses of the lifetime anti-rejection meds coincides with decreasing the Prednisone (short term anti-rejection med). He definitely needs to continue weaning off of that so he can have his hernia surgery!! 

He was a little hopeful that he would be discharged today because the clinical pharmacist gave him a new blue card (table of meds/doses/times, etc...) to go home with. Sadly Danny isn't allowed to take any kind of medicine that would help diarrhea except for Metamucil (I know, that's for constipation...but apparently it works by bulking up the stool so in theory it should help). Meds like Pepto Bismol negatively interact with his transplant meds. 

Hopefully he will be able to come home tomorrow. Today is Maggie's 15th birthday! Last year Danny was in the hospital too, I think he had just gotten his LVAD. We had a birthday party for her in the hospital. Charlie's birthday is in December and we celebrated his in the hospital last year too! Looks like we'll do it again for Charlie since the hernia surgery is in December!!! Good thing my kids haven't ever gotten accustomed to big birthday parties with a bunch of friends!! 

I'm excited for Danny to get back home. I went to see him last night and it was like being back in our second home! We know the nurses and staff and it feels very comfortable there. I haven't decided if that's a good thing or not! Being apart from each other isn't easy. 

Thanks for praying! No rejection is definitely praise worthy!!!! 

~Tricia

7 months since surgery

Its been a little over 6 months since the transplant and things are not what I expected at all. I know that sounds negative and I don't mean to be...I'm just trying to be transparent and honest with our experience. Danny and I both thought he would be feeling a lot better than he is and struggle with discouragement. 

When he was diagnosed with end stage heart failure and was hospitalized, Danny was extremely ill and felt a huge difference when the LVAD was put in. He felt like he could breathe again and noticed a big difference in his energy levels. However, that's not saying much because they put the LVAD in when it was either that or die. 

Life with an LVAD isn't exactly ideal. Emotionally it was very difficult, not to mention the hassle of plugging in and battery changes. We assumed that life after transplant would be far easier. We were told many times it would be difficult in that it's a life-changing event with many challenges. But you truly don't understand what that means until you walk through it! Don't misunderstand, Danny and I are both grateful for the transplant and are thankful for every day he has...just a little discouraged at the bumps he has had thus far in the recovery process. 

He has 3-4 incisional hernias. His incision goes from his sternum to the right of his belly button and the hernias are grouped together about 1-2 inches above his belly button. They are big and extremely painful. It looks like he has an alien growing and bulging out under his skin. Each time he is back in New Orleans they discuss the hernias and the hope is to wait until he is a year out from surgery to do the hernia repair. Waiting that long is to give his body more time to heal from the first three surgeries, and also time to finish weaning off of Prednisone. Prednisone is used as a short term anti-rejection medicine and he started on an extremely high dose and is now down to 4 mg/day. He also takes lifetime anti-rejection meds that are increased as the Prednisone is decreased. Coming off of Prednisone is wonderful because the side-effects of that are major puffiness and mood swings, but he is having a LOT of GI trouble with the increase of the longterm meds. This last week Danny has had severe diarrhea, which we attributed to the medicines. However, after some blood work came back the doctors said it showed some pretty disturbing signs of rejection and infection. So, next week they are going to do another biopsy to double check the possibility of rejection. They also said that if he has any more diarrhea he is to go to the ER (Ochsner) in Baton Rouge and they will be able to work with the team in New Orleans (hopefully). 

That was yesterday...today he is just having bad nausea. He has a temp of 99F and we are to call at 100F (how do you make a degrees symbol on a keyboard??). I'm also supposed to watch him like a hawk and if I see anything that scares me I'm to take him to the ER. 

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Danny's latest appointment in New Orleans was this past Tuesday and this is the first time the doctors and nurses seemed as concerned as we have been about the hernias, so clearly they are getting worse. The plan is to do surgery in December, close to Christmas break for me. That way I miss as little work as possible and Danny has as much time as possible to be weaned off of Prednisone. I forgot to mention above that another side-effect of Prednisone is that it decreases the body's ability to heal...so that's not a good combo with surgery and being on such high doses before probably aided in the incisional hernias in the first place. 

We are not looking forward to another invasive surgery, but on the other hand, these hernias are pretty disturbing. When you run your finger down his incision you can feel the rope-like scar until you get to the hernias. There it feels like a crater from the wound opening back up, and then it goes back to the rope. It's so weird looking but sometimes we have a good laugh! 

Four weeks ago Danny went back to work. I'm not sure if he realizes it but he was so scared to return for fear of failure. It has been tiring, but manageable. He has had a couple of days that were bad and he worked from home, but usually he goes to the office. His work continues to be the most amazing employer possible. I've never seen or heard of a more supportive and genuinely caring work place. Danny is a software developer and was worried that he wouldn't be able to perform up to par because of how he sometimes still feels like he has a "mushy" brain, but it's been fine. It has been good for Danny to be out of the house most days and to get back to work. I'm sure what he does now is not quite the same as his performance prior to transplant, but really most things in his life have changed in the last year or so. He's done fine though, he has solved some programming problems, met with a client or two, and has felt like a contributing member of his job again! 

Once we are past the surgical complications (hernia repair in December), hopefully he will start to feel great again. I doubt he can even really remember what feeling great feels like. This has definitely been a long year! 

On a different note, I just finished my 3rd week of school. I have a great class and an incredible new principal! Maggie donated her turtles to my class and last Monday I got to work and thought I had killed them. The smell was horrid and all I saw was thick greenish water and lumps of mushy stuff along the wall of the tank. I thought I had killed them, but while dumping the tank out, we found them still alive! It was a really traumatic experience and one I definitely don't want to repeat! Currently the turtles are living in the kid's bathroom because I broke the tank accidentally. I'm pretty excited to get another tank and bring the turtles back to school. 

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I've been writing this post for a couple of days off and on so there are a few updates since I began. I have a new tank for the turtles in my classroom (thanks Dad!!) and they are super happy!

Danny was admitted to the hospital in New Orleans today. His initial bloodwork today didn't look great and they did a traditional biopsy (through his neck to the heart) so compare results with the bloodwork biopsy. He definitely has some infection going on with the constant diarrhea for a week and is also bound to be dehydrated. They will get the results of the biopsy and all bloodwork tomorrow, so we will know more of the plan then. Danny wants me to stay in Baton Rouge so I can work and be with kids at night. He said that after he talks to doctors tomorrow and knows the issues and the plan, he will re-evaluate what he wants me to do. It's really hard having him in New Orleans with some potentially serious complications/problems happening and not be there with him. 

Tonight Maggie told me that as hard as last school year was for her with me not being home so much, she wanted me to be with Daddy if it helped him feel better and that she would be okay. How awesome is it that she is so selfless! 

I'm definitely anxious to hear from him tomorrow. 

On the home front...Charlie was fouled pretty badly (and intentionally) in his last game. The player tripped him, kicked him in the achilles tendon, and then stepped on the side of his ankle after he was on the ground. Thankfully his ankle isn't broken, but it is a really bad sprain and the doctor said his tendon looked bad and he's lucky it wasn't broken. Charlie has to wear this tight, lace-up boot support ankle thing and he hates it because it hurts so badly! It hurts badly without the ankle support too. He can't play soccer for at least a week and a half according to the doctor. 

Maggie has an outer ear infection, and thankfully mom was here this past weekend and was able to diagnosis here and I had the antibiotic ear drops on hand Maggie needs. 

I'll blog again after I have news tomorrow!

6 months

It’s been a long time since I’ve blogged and I know some of you have been wondering how things are going. Sorry! The school year ended on May 22 and I’m already ready to get back in my classroom to start getting ready for next year…I do love teaching. It’s not what I thought it would be. I expected more teaching of curriculum and less teaching of behavior, manners, feelings, attitudes. As parents, Danny and I took care of those responsibilities and didn’t leave them to the teacher but I’ve come to realize that just isn’t always the case. After I took the time to step back from the shock and disbelief of the way some people raise their children, I realized that God has given me the job of teaching in the public school at this exact moment in my life for a purpose…His purpose. My kids are both teenagers and are quickly approaching adulthood and I really think they are great kids! They are far from perfect, but who isn’t?!?! When I think of Maggie and Charlie growing up and moving away from home I honestly have to stop thinking about it so I don’t start crying. Is it really possible to miss them already at 12 and almost 15?

OK break~~I’m sitting at the place where Maggie takes Hapkido (a martial art that she absolutely loves). The “studio” is a building that sits on the family’s property. They have lots of chickens and 4 or 5 roosters. I”ve logged quite a few hours now watching these roosters and they are pretty fascinating. There is a lot of great info I could give about what I’ve learned so far, but that’s another blog I guess…but I’m blown away right now. A rooster is in the tree on a branch like a huge bird! If the rooster can get in the tree then what prevents the thing from flying away? I’ve been trying to figure out what keeps all these animals from walking out of the yard…which I thought was a mystery enough!! These roosters are awesome. They even have their own individual struts, and boy do they strut!!!

Back to blog~~~I don’t know if already missing my kids is normal or not, but it is the way I feel. However, I’ve come to realize that my “parenting” days are far from over. In fact, they are really just beginning. My students need so much more than to learn the typical school subjects. They need to learn about caring, sharing, giving, kindness, helpfulness, (sometimes) personal hygiene, (sometimes) hair care, table manners, respect for each other and for authority, how to be a friend, etc… I’m not only a teacher but a social worker, health instructor, and “mommy” to a whole group of kids each year. What I’ve realized is that even though that is not at all what I thought being a teacher would be like, it’s exactly why God has me being a fairly new certified teacher at age 39. In the beginning I felt so inferior to the younger teachers who have masters degrees and more years of “actual teaching experience” than I do. But that is so wrong. What I have is many years of adulthood and life experience. I’m more than halfway done raising my own kids while they are starting their families. I have countless hours of home schooling my own kids in their early years and countless more substituting and volunteering in the public school classrooms. So, though I’m technically less qualified by college degree and years of service, I am very qualified to teach and am so excited about the plans the Lord has for me. It’s so easy to look at other people and feel inferior or insignificant…if you were to meet my siblings (real and in-laws), you would understand how I could feel inferior because they are all so incredibly gifted and amazing!! God has made me to be a teacher and I think I’m a better public school teacher now than I would have been had I started teaching at 20 something. I’m so excited to start the new school year fully mentally prepared to be all those things the students need other than the regular classroom teacher and I pray that the Lord will be able to effectively use me to make a difference in the lives of those children.

Danny is getting better…it seems like the longest process in the world, but each time we go back to New Orleans the doctors and nurses are easily able to see and encourage us with his progress. He has a couple of incisional hernias along the bottom of his sternal incision that cause a lot of pain. There isn’t a plan to try to repair the hernias because they don’t want to cut him open again. Do hernias just go away by themselves??? Many days his arms and/or legs still hurt. It’s pretty cool actually (cool may not be the most accurate adjective I could use)! When he has the leg or arm pain it’s because his vein (or blood vessel—I don’t know!) feels rock hard from a blood clot. Sometimes the clots are short (an inch or so) and sometimes they go the length of his forearm. These clots are in superficial veins we have been told so they aren’t anything to worry about. I don’t know if the clots will happen forever or if they are more short term. Danny is still having tough side-effects from some of the medicines and I honestly don’t know if the hard blood clots are one of them. As you will remember, Danny has a ton (actually fills up a medicine cup) of medicines that he takes. Some are short-term and others are long-term and forever. The short-term ones (Prednisone is a big culprit in this) cause the worst side-effects (I hope I remember that correctly and I didn’t just make that up to help us cope). The good news is that next week is his 6-month (post-transplant) visit in New Orleans. The 6-month mark is when they can remove some medicines and wean off others. Danny is still completely rejection-free, which I contribute to prayer! My hope is that Danny will start to feel a lot better when some of these meds are gone. Here’s a list of his common side-effects: shakiness, dizziness, involuntary muscle jerks, weakness, mood swings (severe), nausea, insomnia, arm/leg pain (severe), finger cramping. I’m sure there are more but those are the ones that never seem to go away.

Danny started physical therapy (cardiac rehab) about a month or so ago and he enjoys that. It’s amazing how out of shape he became (I don’t mean his physical appearance but rather his muscle function) from being so sick for so long. They are very careful with him at therapy and monitor him closely. It’s hard to remember my youthful, soccer playing, energetic husband a couple of years ago and see him struggle to ride a stationary bike for 4 minutes. The balance between feeling so unbelievably grateful and blessed that he is alive with a new, young, and healthy heart and feeling so scared that he won’t ever be able to play hard outside again with our kids feels like a nightmare to me sometimes. In fact, you can’t really even express those feelings without also feeling like an ungrateful jerk. As I sit here crying in this car with the flying rooster nearby (still in that tree), I am reminded that “…God gave us a spirit not of a fear but of power and love and self-control” (2 Timothy 1:7).

Lord please strengthen me and my faith in you. I can live and function in my own self-control, but I don’t want to. I want to be dependent upon you for my thoughts, feelings, fears, and actions. Help me to trust that no matter what life holds for us in the future that it is in your hands and therefore it is good. You are good…no matter how I feel. You are good, no matter how Danny feels. You are worthy of my complete trust in you with my feelings and life.  Please help Danny get stronger and feel better. Please help him to get back to living again with his new heart. Thank you for the support system we have. So many probably don’t even know what a blessing they are to us, but they are and thank you for helping us through people. Sometimes (often) I need help and please continue to give me the humility I need to ask. I can’t do all of the things Danny used to do and I need help. Danny struggles so much with feeling unworthy and helpless…encourage him and let him know how loved he is. Please help Charlie learn how to do the things Danny can’t right now…give him strength and a desire to fill the gap as long as we need him to. Mostly Lord please continue to heal Danny and give us some “normalcy”. More than that though, help me to trust you and be content, thankful, and joyful for where we are today.

Two weeks ago Danny told me that we are going back to the church we left years ago and I am so overjoyed. I have prayed for a long time that the Lord would lead us back and honestly was starting to give up hope. We were at a wonderful church with wonderful people, but for me it just wasn’t “home” and it’s good to be back!!! Danny hasn’t been able to go yet. Large crowds aren’t good for him and he gets really tired quickly. It’s awesome how there’s one, huge Body of Christ spread all over the world, and then there are individual Bodies of Christ. Though we are all Christians and serve the same God, we are most at home in our own Body (church and church family).

I’ll update the blog again next week after Danny’s at Ochsner again. Not sure the day though!!

   

Getting used to medicines

It's been a long time again since I've blogged. I appreciate the people who ask about Danny from time to time because it reminds me that people are thinking, caring, and praying for us. I get so wrapped up in keeping things together that I forget about others I guess. 

I am so grateful and thankful to say that Danny still has not had ANY rejection. I have to keep reminding myself of that and be intentional about thanking the Lord because the medicinal side-effects are so difficult for Danny...and therefore me too.

• intense burning all over his body from the inside
• intense fire-ant bite like feelings all over
• Intense itching everywhere
• horrible vision, causing headaches and dizziness
• confusion/concentration problems
• mood swings, severe
• surgical pain, controlled with pain meds...best is a 6/10 on pain scale (10 being worst pain possible)
• cramping
• weakness
• shakes
• excessive sweating during sleep
• sleeplessness
• exhaustion
• depression

If you add all of those symptoms together, it makes for one hard day...for Danny and those around him who are trying to help him. 

The medical bills are just scary. He has had three open heart surgeries so far...

• LVAD (mechanical heart pump) implanted
• Heart transplant and LVAD removal
• Repair of transplant surgical complications

Those three surgeries required months of hospitalization and that adds up quickly! After a transplant the doctors do biopsies routinely to check for rejection. Biopsies aren't fun because it's a tube going in through the carotid artery on the right side of the neck that is fed over and down to the heart. A small chunk of the heart is cut off and removed for the biopsy. They have always taken a few chunks with each biopsy...I guess to make sure they have a good sample. Biopsies aren't anything new, but now there is a blood test that can be done through blood work. It's called Bio Map (I think that's how it's spelled). Anyway, obviously it's great because for Danny it's just more blood that has to be drawn and no matter how someone hates having blood drawn, it's always going to be more pleasant than an actual biopsy. So far Danny has had three Bio Maps done, and each of the results has matched the traditional biopsy results. The plan was to discontinue doing the traditional ones and do only Bio Mapping in the future. Danny and I found out (after 3) that Blue Cross won't cover the Bio Mapping because it's still in an investigational stage. Ochsner sent documentation to Blue Cross to explain why it is medically suggested for Danny and all of the current statistics, but Ochsner stood by their original denial. Each Bio Map is extremely expensive, and unfortunately it's our bill. I think Danny is going to request to have traditional biopsies instead of the Bio Map since insurance won't cover it. 

He will soon be returning to work. I'm not sure how it will go because programming is such a detailed and technical thing, but returning to "normal" will be a good step. His work is so great and I know they will work with his shortcomings until he is weaned off some of the medicines with such terrible side-effects. He is supposed to wear a face mask anywhere away from home for a least a year after transplant, so I'm not sure how that will work. Wearing a face mask throughout the work day doesn't sound like fun to me! 

Prayer requests:

• finances
• medicine side-effects
• encouragement
• faith

Thanks for continuing to pray for us. We still have a long road ahead of us!!

~T

life and death

Contemplating life and death is hard. I'm very much a realist, but there are times when I intentionally stick my head in the sand and absolutely refuse to listen to what may or may not be the reality. 

1. I choose to believe that babies go to Heaven. I have heard both sides of the argument and have read what the Bible says about both of those sides. Though I side with the "go to Heaven" believers, I have lived enough to know that first, I don't know everything, and second, I certainly don't know everything about God or Heaven. 

Our first son, Daniel Jr., died at 25 hours old from an unexpected heart-defect. I simply cannot live with the thought of him not being in Heaven. So I don't. The Bible says in Revelations 21:4:

He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.

So, I know that even if I'm proven wrong...it won't matter because somehow I won't mourn or cry or feel pain. 

Last night one of my dad's dogs (children) got hit by a car. Dad is out of town and the teenager next door to him and I take care of the animals. I don't know how Patches got out and the guilt and grief the teenager and I are feeling is immense. Let's suppose that Patches opened the door himself (which is possible because this dog is like Houdini), it still happened under our our watch while Dad was away. I told Dad (over the phone), which was completely heart-breaking. 

Patches was a truly amazing dog. He was a German Wire Haired Pointer...which is the kind of dog on the movie Up. He was HUGE...but thought he was the size of my Maltese. Patches would attempt to put his entire body in your lap and would literally wrap his paws around your neck to hug you...when I say you I mean anyone who was in the room!! Danny doesn't like big dogs at all and Patches, through his complete love and affection, bonded with Danny. It was really neat to watch Patches snuggle with Danny but somehow knew to not put any part of his body on the parts of Danny's body that are still so painful from the surgeries. To watch my dad with his dogs is like watching my sister with her son. He loves them and they adore him. The teenage boy, his dad, Maggie and I buried Patches and Maggie picked flowers and made a cross for his grave. 

2. Just like with babies, I choose to believe that animals go to Heaven. However, unlike with the babies, I haven't heard anyone ever use evidence from the Bible to back up my claim that animals are in Heaven. But that doesn't matter to me. Head in the sand!!!! Animals love, feel fear, pain, sadness, joy, etc... The Bible says:

Then shall the trees of the forest sing for joy before the LORD, for he comes to judge the earth. 1 Chronicles 16:33 

and

Sing, O heavens, for the LORD has done it; shout, O depths of the earth; break forth into singing, O mountains, O forest, and every tree in it...Isaiah 44:23

If the trees of the forest can sing for joy before the Lord and the depths of the Earth, mountains, and forests and sing and shout...why can't animals have a soul, be saved, and go to Heaven? Or why can't God bring them to Heaven just because he loves them even if they don't have salvation like people do. Anyway, don't waste your time trying to be the voice of reason in my life to prove to me why I'm wrong because I won't listen. In fact, I won't even listen to you! 

Here's what I'm choosing to believe...Today, Daniel Jr. and Patches are together and are both quite happy getting to know each other. 

My heart is aching from sadness. I've cried a river today! It was completely impossible to not love that dog! 

Danny has been having severe pain in his right forearm. The slightest touch causes him to moan and jerk his arm away. The big vein on the inside of his forearm is hard like a rock. I called the nurse to inform her and he had an ultrasound done the next day in New Orleans. He has a large blood clot in his right arm pit that is causing problems all the way down to his hand. Apparently the negative effects (or the clot itself) only go a few inches and down to the elbow at most...but once again Danny is unusual and has more complicated problems. They didn't admit him Friday because over the weekend not much would be done other than observations, so he will be at Ochsner more this coming week to do more tests. Not only are they concerned with the large clot they do see, they are worried there are more smaller ones underneath they couldn't see on the initial ultrasound. I don't know what the plan is to deal with the clot yet. I don't know if he will be put back on Coumadin to prevent future clots (He hasn't been on Coumadin since having the LVAD). I don't know what the risk is for part of this clot breaking off and causing a stroke. I do know that the doctor teared up when she got the ultrasound results and told Danny that of all the patients she didn't want this for him. He has had lots of unusual complications they haven't understood!! I also know of an LVAD and subsequent heart transplant patient who had waited years for a heart died 5 months after transplant of a stroke. I do know that stroke is a major risk for transplant patients. 

I can't stick my head in the sand when it comes to Danny. I have to face the reality of how severe all of this is. Life and death is in the Lord's hands. 

And he said, “Naked I came from my mother's womb, and naked shall I return. The Lord gave, and the Lord has taken away; blessed be the name of the Lord. Job 1:21

The doctors told us at the beginning of all of this end stage heart failure stuff that transplant is a last option. It's a good option, but only when all other measures have failed because then the person is so susceptible to other potentially fatal complications. The truth is that Danny's life is in the Lord's hands. As unbelievable as all of this still is to us. Danny never expected to be a heart transplant recipient when he was dreaming of his grown-up life. I never imagined to be the care-giver of a very ill husband at 37-38. Danny's parents never imagined that their son would ever be so ill. It's just unbelievable even though we face it day in and out. But what is awesome is that none of this is unbelievable to God. He gave Danny to Joe and Carolyn knowing what Danny's life would be like. He put Danny and I together and gave us our children knowing what we would walk through together. And He knows-in His infinite wisdom and love for us- what we can and cannot handle and He will never allow us to go through anything we can't handle and He never ever asks or expects us to handle anything alone. He is our strength and comfort. Our joy and peace. Our guide and conviction. He's a loving Father in every sense of the term. 

No temptation has overtaken you that is not common to man. God is faithful, and he will not let you be tempted beyond your ability, but with the temptation he will also provide the way of escape, that you may be able to endure it. 1 Cor 10:13

Temptation refers to all of the struggles we face...true temptations like food, but also trials we face like death (The Greek for temptation and tempted can also mean testing and tested).

I was telling my sister-in-law today how amazing I think she is. She is a single, independent, intelligent, professional, career woman. She travels internationally (alone many times) for business. She does her own taxes (truly amazing to me!!). She cooks, cleans, studies the Bible, takes continuing education classes to learn a new hobby she finds interesting. Though she would love to be married, she has not allowed being single to hold her back from amazing adventures in life. I drove across the border into Canada with my mom last year when she lived in Maine and felt uncomfortable being in another country without Danny...even though we were perfectly safe the whole time. I'm so dependant on Danny! If it's in the Lord's plans for me to learn to depend on Him in the same ways I depend on Danny, I can honestly say that I'm not interested at all in that lesson right now. I'm just going to be extremely grateful for every second I have with Danny and won't dwell on what life would be without him. Right now I can't see how I would be able to handle it, so I'm assuming God has many more years planned for Danny!!

Danny is still having a LOT of trouble concentrating. He got in trouble with the nurse for trying to do too much. Danny attempted to go for a jog and barely made it down the driveway without falling. The nurse really fussed at him and told him to think more in terms of Sudoku. Danny also cut the grass one day while I was at work (fell down three times in the process). I noticed the grass right away when I got home and immediately felt sick because I know how stubborn and determined Danny can be. I didn't tell the nurse about the grass because I knew how angry she would be...Danny promised me he wouldn't do anything that stupid again. When I went into the bedroom after seeing the grass he looked truly horrible. It was so hard to control my temper. I was so angry and scared!! I didn't have to fuss at him because he already knew how dangerous and stupid it was and was already in a huge amount of pain. 

Danny is so frustrated that he can't think well. He wants to work so badly but is having trouble with the computer/developer stuff he is attempting at home. Thankfully (according to the doctors)  the mental stuff (lack of concentration/confusion??) is 100% medicine related and will get better as he is weaned off of some of the meds over time. 

Danny's work has been more supportive and helpful than I would imagine any other company in existence. My 1st grade students have had discussions about how girls cry for many different emotions...and the people Danny works for and with constantly bring me to tears with gratitude, humility, and joy!! 

Thank y'all!!!!

I will update the blog when I know more about the clot.

As always, thank you for your prayers. They are not unfelt!

~Tricia

Trying for Normal

I haven't blogged in a while because I've been so busy but I forgot that people actually read this for updates! For me, it's a therapeutic journal...Danny has been home for a couple of weeks and is slowly recovering. His abdomen is still red and "infected" looking, but he has no other signs of infection. The doctors truly have no idea what the redness is and don't have any more tests to try. So, we watch and wait. His heart biopsies are still showing no signs of rejection, but a new rejection determining test (done by bloodwork--called MAP) is showing slight rejection. Apparently it's a little more accurate than the biopsy and even though is shows slight rejection, I don't think it's enough to really worry about at this point. The doctors are still adjusting Danny's medicines regularly as routine blood work results become available. Though his incision is healing correctly this time, Danny still doesn't feel very good. Overall he is improving and getting stronger, but it's a slow process. Headaches, body aches, swelling, eye pain, fluid retention, mood swings, etc... I have gone back to work and am pleased to say that the Lord has changed my attitude and outlook on working. It's hard, but not the hardest thing in life and I'll be fine!! Maggie and Charlie are happy we are home. As would be expected they each struggled.struggle in their own ways with Danny and I being gone, but we are working through those challenges together. It's nice to have a parenting partner at home again...even if he helps from the bed mostly. :) 

Hopefully Danny will continue to slowly and steadily improve. It would be an awesome miracle if he never had rejection issues to worry about. I'm so grateful he's home. Thank you for your prayers and support. It has been such a blessing for us!

~Tricia

Repeat mystery area

When Danny went in the hospital for the surgery to reopen his sternum, flush it out, and close it correctly we anticipated that he would be home a few days later. That surgery was on 2/27/14 and it is now 3/10/14 (11 days later). The doctors knew about the complication because of the inflamed, red area on the bottom of Danny's sternum. As unbelievable as it is, he has a new inflamed, red area and inch or two where it was before. The nurses and doctors are completely baffled. So far the bloodwork and cultures are testing negative for infections, but it's possible he could have an uncommon bug they are not testing for. His body is showing signs of a problem other that the big red area on his sternum. His temp has been a little higher than what's normal for Danny and his BP and pulse have also been high for him (at rest). So, even though the doctors don't yet know what they are dealing with, they do know there is a problem...and they are concerned. The doctor on call over the weekend for the heart team saw him on Saturday and took a picture of Danny's sternum (to send it to the surgeon who was out of town over the weekend) and Sunday when she looked at his chest her mouth dropped open. I would love to say that Danny and I are making a bigger deal out of this than we should be, but we aren't. It's not good to have had a heart transplant, a suppressed immune system, and then have a mysterious area that looks incredibly suspicious for infection. Danny had an ultrasound yesterday and just like the first time, something is showing up on the ultrasound, but they don't know what it is. Danny is still hopeful that it's a cool little alien friend living in his abdomen. 

The doctors are still tweaking his pain meds trying to find the right one to alleviate his pain. They just came in for rounds and the thought is that it's fluid collecting again...or still, really. When they pulled out the chest tube the other day it was still draining but because his abdomen was starting to get red and inflamed again, they removed the tube to eliminate the possibility of it causing infection. I don't understand why if the chest tube was in and was draining why his sternal area started getting inflamed and red again in the same general area. I think they will put in a wound vac because the surgeon told us after this latest surgery that the next step would be a wound vac if necessary. Apparently they are amazing at stimulating healing. Danny's sternum is just having a really hard time healing and having a suppressed immune system makes it very tricky. They have to lower the immuno-suppressant medicines to enable his sternum to heal (and fluid go away), but if they aren't careful his body will reject his foreign heart. 

We don't know if they are just going to wait and see what happens or do something surgically (proactive)...but I do know they won't send him home until his pain is managed and they feel comfortable knowing for sure what's going on with his sternum/fluid issue. 

This is my last week with Danny before my leave is over and I have to go back to work. The kids have been struggling with the pressure of all of this and so I am going home at night and back to New Orleans during the day. If Danny is still here next week it is going to be awful not being able to see him during the day. 

Though I know for sure that God is good and faithful, and I know for sure that He loves us and has not forsaken us, all of this is still very, very hard. I haven't learned those things through this experience because I've already learned them through previous life experiences. What I'm learning through this trial is that He is the perfect comforter. People try to comfort-and many do. However, some people are hurtful (unintentionally I'm sure) and that is so hard. When we are in survival mode, our feelings and emotions are fragile and vulnerable. I think maybe things that are hurtful to us now maybe wouldn't be in times of life when things are smooth sailing. Anyway, I'm learning to give that hurt to the Lord and allow him to comfort me and bring me to forgiveness. Forgiveness can be so tough and I'm not an expert by any means!! I am an open person who wears my feelings on my sleeves. God is teaching me  and convicting me to take my troubles to Him first. He does use the body of Christ, friends, family...to support each other...but God should be our primary source of comfort. I hope I learn that lesson well through this time of trial. 

Prayer requests:
Danny's fluid/sternum/solution/pain
Maggie & Charlie (God knows their needs)
Tricia: strength, learn God's lessons, work next week, parenting, support Danny

Thanks and God Bless, 

~T

On the Road Again

The song On the Road Again keeps coming to my mind... Danny and I are so ready to get back home again!!! 

Danny is able to use the bathroom without trouble or pain now and he is sleeping through the night, which is something he hasn't been able to do in a long time. The amount of fluid his chest tube is putting out is still over the limit, so we are waiting on that to slow down a lot. If the tube is removed too quickly then the extra fluid may seep out through his sternal incision instead of being reabsorbed into his body. So, the best thing to do is to be very patient and let the chest tube do its job!

Danny is still using a pain pump that he will keep until the chest tube is removed. The good news is that when he needs the pump, it works...however, he doesn't need it nearly as much as he did in previous days. Danny will be transitioned over to oral pain meds with IV pushes for breakthrough pain when the chest tube is removed.

I thought the incision the surgeon did this last time was to reopen the bottom 6 cm of the sternal incision, but apparently   I misunderstood. The surgical bandage was finally removed today and it's 6 inches, not centimeters. That makes more sense to me because I was having a hard time understanding how he could drain fluid, flush, scrape, and stitch in a 6 cm opening!

Bottom 6 inches reopened...that's about half!
What's still covered is the chest tube exit site.

Danny's arms look soooo sad...the slightest touch hurts.His veins are not cooperative anymore!

Bruises from IV's and blood work

We try to go for several walks each day. It's kind of hard because Danny needs to walk to recover more quickly, but walking makes more fluid drain through the chest tube thereby keeping him hospitalized longer...

Prayer requests:

• Chest tube stops draining or slows down considerably
• Easy transition to oral pain meds from the pump
• Sternum stays closed tightly with no leaking
• The 1st three lead to going home soon!!
• Our children

God Bless,

Danny & Tricia         

Persistence

I admire Danny's persistence...I would have given up the battle more than an hour ago. After receiving a pretty good amount of IV fluids and drinking water orally, Danny finally feels the urge to urinate. His bladder feels full and despite his valiant efforts, so far nothing! This began at 12:00 am and it is now almost 2:00 am. I'm not sure what else he could do to force his body to urinate. He rotates between sitting, standing, bedside, bathroom, running water, silence, praying out loud, praying quietly...His pain medicine pump is now out of medicine and is beeping steadily and loudly. He refuses to call the nurse in to refill the medicine because then the nurse would do the bladder scan to know exactly how much urine Danny has, and then the nurse would probably have to do another in and out catheter...Danny (against my advice) is choosing not to call the nurse about the pain medicine being out and is absolutely determined to go to the bathroom on his own...even though that means he will be totally behind on pain medicine. 

Persistence. Like I said, I would have given up already!! Clearly the catheter hurts pretty badly for him to give up pain medicine for now. The nurse told Danny he was going to give him until midnight to use the bathroom and then comes the bladder scan, a call to the doctor with results, and probably in and out! It's two hours after midnight and still the nurse hasn't come in. That means Danny is seriously running out of time!!! Who will win the battle of the wills...Will Danny be able to urinate on his own without pain medication? Or, will he be forced to give up by the nurse??!!?!?! Stay tuned...

After surgery day 1

Last night and today have been long. Danny hasn't been able to urinate on his own yet and has already had one in and out catheter (put it in, drain bladder, take it out) at 4:00 am. Since then he still has not urinated (despite trying every trick in the book) on his own. They are giving him more IV fluids in addition to not limiting his oral intake in hopes to "jumpstart" his kidney. 

Danny is on a pain pump with Dilaudid and he is requiring a lot to keep the pain down to a 6 or 7 out o 10...10 being the worst pain. Apparently many people would be knocked out with the amount of pain meds Danny is on right now. Throughout our marriage Danny has never really felt relief from typical pain meds, so his solution is to take nothing unless it's unbearable pain...and then it's when I'm making him because I'm worried about how badly he is hurting. 

Anyway, the thought is that the Dilaudid is making his bladder "sleepy" and not give the signals needed for his body to urinate like it should. For sure this will work out and his urinary system will get back on track, but in the mean time they have to continue to do the in and out catheters to empty his bladder. The nurses have a bladder scan machine (like an ultrasound) that tells them how much urine is in the bladder. The in and out catheter is used if the urine is over a certain amount...Apparently the bladder can burst if it gets too full for too long!?!? That sounds pretty uncomfortable to use one of Danny's favorite words. :)

We are both exhausted from spending all night and day trying to help Danny urinate. The question was raised about how I would go about helping Danny use the bathroom...Well, hold him up when he's sitting or standing so he doesn't  get too wobbly and fall, holding the urinal for him when he gets too tired, waking him up when he dozes off so he can keep trying, water running in the background, Hot water to dip his hand in, rubbing his back to help him relax, etc... We literally can't think of any other "tricks" to try so it's looking like the in and out will be happening again soon. :(

We went for a couple of walks down the halls today. He was pretty wobbly, but made it just fine. He may go home as early as Monday...the hold up will be getting his pain under control on oral meds. He wasn't sleeping at all due to pain prior to this hospital stay and the doctors really want the pain well managed before we go home. Pain is preventing Danny from sleeping and doing everyday chores/routines...and that wasn't the purpose in receiving a new, healthy heart!!!

Please pray that Danny's recovery would be so fast that no one could assume it would be anything other than the Lord. Pray for pain relief and perfect healing of Danny's chest.

God Bless, 
Tricia

Surgery Day

It's about 6:00 am and we just now found out some info finally! Dr. Bansal is hoping to only have to open up the bottom of Danny's sternum to remove the problematic stuff that's in there (Danny refers to it as his growing alien). If it's pus or infection of any kind--high probability I think...they will take a culture to be sure of exact bug so they can use the best antibiotic. In that case, he may be on antibiotics for about 6 months. Bansal may cut out Danny's zyphoid process (little, useless bone at the center, bottom of the rib cage) if it appears to be hindering the sternum from healing properly. Whatever he sees when he goes in, he is going to fix. Because Bansal isn't sure exactly what he is going to find, Danny had to sign all sorts of consents...two types of anesthesia, blood transfusion, and something else I can't remember. 

I feel very comfortable with Dr. Bansal just doing what he needs to do to fix whatever is causing Danny's extreme pain. He is very detailed, picky, and demanding of how hospital staff cares for his patients. He's fun because at first one might get the impression that he is just difficult...but that's not the case at all. He absolutely cares about his patients and wants the best for them. Danny and I really appreciate him and know that the Lord uses him to perform wonderful medicine! 

All that being said...I'm feeling excited and hopeful about this surgery because I know that Danny is in good hands and will be on the road to feeling great soon! 

I have no idea how long surgery will take, but the OR people have my cell phone # in case I'm not in Danny's room when they call. I don't know if he will be discharged today or if they will keep him a bit longer for pain management and/or observation. He's in the TSU (transplant step-down unit), so it's very much like being back at home. Transplant patients are like family around here...it's a very nice environment! 

I'm going to blog throughout the day as more information becomes available. Danny and I are accustomed to being "fluid" (not knowing the plan and just going with the flow). That's the life of an LVAD/transplant patient. However, I realize that lots of people want the info ASAP so I will do my best!!

Thanks for prayers for an amazing surgery and recovery. 

~T

9:15 am...still no word from surgery. Just waiting patiently!!

10:15...surgery over. Dr. Bansal came up to the room for the update. Danny did fine. He didn't have to cut the entire sternum open. The bottom 6 cm of the sternum is what was not closed correctly. That part wasn't wired shut (wasn't supposed to be). Stitches are commonly used in that very bottom part of the sternum. Danny had a huge amount of inflammation and fluid collection. Bansal removed and flushed out the fluid. He scraped (with a medical "sandpaper" in easy terms) the edges of the tissue on the sternum so it can grow back together properly. He put that bottom part of the sternum that wasn't joined together correctly back in place (like puzzle pieces) and used very tight stitches to hold them in place until healing happens. He didn't use wire there because if there is infection he wants the stitches to be able to dissolve without having to open him up again. They did not see pus, but are sending the fluid off for a culture. Danny was intubated for surgery, which he won't like...but on the other hand, whatever Bansal felt he needed to do I'm glad he did! I'm also very glad he was able to deal with the sternum as well as the fluid today. Bansal said that even though he sewed the stitches very tight at the bottom of his sternum, he wouldn't be surprised if that area started leaking again (that is the same area where fluid was literally squirting out of Danny's abdomen a while back...that was wild!! Here's a pic of that craziness... :)

Bansal said it might leak because Danny has soooo much inflammation right now and once the inflammation starts to go down, the stitches may loosen...causing leakage. In that case, Bansal would put in a sponge vac, which is a sponge stuck to the leak and a vacuum type device on the other side of the sponge to draw out the fluid. 

He expects Danny to be in a lot of pain when he gets back to the room and they are going to give him a pain pump for while he is here. Bansal put in one drain tube (chest tube) and will remove it Saturday IF the fluid output is very low. 

Bansal did remove a stitch from the LVAD that was missed during the transplant surgery. I don't know that the stitch caused problems, but why leave something in there that serves no purpose?! 

Bansal wants the heart failure team to drop Danny's steroid level for a while so the sternum can heal well. The steroids aid in anti-rejection...which means that they try to stop the body's natural attempt to heal itself. Since a transplanted organ is not what God put in the body, the body knows that it's foreign and would automatically try to attack it. The steroids and other anti-rejection meds stop the attack. That's good...but the downfall of anti-rejection meds is that his whole body is now not doing it's natural job of self-healing. It would be cool if there was a medicine that only stopped rejection of the transplanted organ and didn't effect the rest of the body. 

So the trick will be to find the fine balance between a low enough steroid dose that allows his sternum to heal properly and high enough that his body won't reject the heart.

Danny isn't back in the room yet because it takes a while to be extubated. I'll update again when he gets back to the room and I know more!!

~T

9:20 pm  Danny got back to the room about 3 pm I think. He has been very groggy from the anesthesia and in and out of sleep since then. 

Using head rest as a splinting pillow to ease pain

Trying to untangle wires













He is plenty silly when awake:

"I got this T for my T"...later it was his gladiator helmet!!

When the nurse told him he HAD to urinate or the doctor was going to order a catheter Danny said "Now, remind me what that is...will that be pleasurable?" lol 

"Hey Trish, see my lasso?"

"Come over here and tell me what the extracurriculars are all over my back." He had some stickers for the heart monitor leads still stuck on his back from surgery and this huge round bandaid thing over his bottom. I'm still not quite sure what that's for but when I went out to ask the nurse if it was ok to take it off, I started by saying "he has this big, round...". She finished my question with laughter and said "bandaid on his butt?...Yep, they didn't tell me that was still on, you can take it off. just let me know if it has anything on it."

Front and back pic...I have no idea!!!!





This nose flap this is just hilarious. It's a O2 and CO2 sensor for patients with pain pumps. If his levels aren't correct, the pump won't allow anymore medicine...So it certainly serves a purpose and makes sense, but looks absolutely ridiculous! Danny, the nurse, and I were all laughing. There's  this unbelievably ridiculous show on TLC called Myrtle Manor we watch sometimes for a good laugh. The security guard for the trailer park has a "gostache" (a mix between a goatee and a mustache...not joking...) Anyway, this is Danny's gostache!!!

  

Though he is in a lot of pain at the moment, I'm excited that pretty soon he will be feeling better than he has in years!!!! 

Will update tomorrow...