Monday, September 8, 2014

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. 

Thursday, September 4, 2014

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!!!! 


Tuesday, September 2, 2014

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 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. 


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 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. 

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!

Thursday, June 19, 2014

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!!


Monday, April 28, 2014

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 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!!


Sunday, April 6, 2014

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 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 


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!


Wednesday, March 26, 2014

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!