Bye-bye, Oxygen!

We went over to my parents' place for dinner last night and I was really happy to see Aaron without his oxygen. My daughter and I went over on Saturday and he was still hooked up to it.  The tank was gone and he was upstairs rather than downstairs.  Aaron kind of had to stay on one level until he felt up to it.  I guess he made two trips up the stairs on Sunday.  I love seeing progress!  Thank you all, again, for your continued prayers and support.

Coming Home!

Well, it looks like Aaron is coming home in about an hour!  He'll be released at noon today.  He's been making excellent progress, so they're sending him home.  Aaron will have an oxygen tank, as he still needs that for a little bit.  They tried taking his oxygen down yesterday and his saturation level went from 95% to 75% and he nearly passed out.  So, as long as he has the tank he should be fine.  That's really incredible progress.  He was originally expected to stay in the hospital for a week, but he'll be coming home 76 hours after they cracked his chest open.  Not too shabby.  By the time I get this published, Aaron and his big heart will be home.  Go Aaron!

Doing Well

Aaron has been up for walks several times and went on to solid food yesterday.  There was some kind of miscommunication about the timing on pain meds, so he spent some time in more pain than he should have been.  That's been resolved and he's doing better.

The best news is that Aaron is slated to be released on Saturday.  He's doing really well and his doctor is going out of town Saturday.  The doctor doesn't like to leave patients in the hospital if he doesn't have to.  Good man.

Other than that everything else is about the same and that's good news.

Out of ICU!!!

They moved Aaron out of ICU at about noon today!  I'm totally shocked.  He's now on the cardiac floor of the hospital.  The IV is out of his neck, as well as the arterial line.  My parents called me just as Aaron was being moved and they were off to get something to eat.  The nurses had him up walking earlier today, as well.  It looks like everything is going well.  I just can't seem to get over my surprise that he's already progressed so far.  Maybe if he continues doing so well he'll be able to get out of the hospital earlier than expected.

From what I've heard, Aaron seems to be doing well with talking to people.  That's always good.  I guess he's pretty coherent.  Everything is looking up.

Thank You

This morning I spoke with my dad before he left the hospital.  He told me Aaron seems to be doing really well and told me about all the tubes coming out of him (two chest tubes to drain fluid in the cavity, a catheter, a neck IV, and an arterial IV in his right arm that is surrounded by a plastic thing.  I think that's all.).  My parents will likely be at the hospital most of the day.  I'm still waiting to hear how he's doing with visitors.

Before he left Dad also told me about the valve Aaron got and where it came from.  Somehow I never made the connection between Aaron getting a human valve and the fact that it had to come from a person.  A donor never came to mind.  My heart goes out to the family who lost a loved one, allowing my brother to get on the path to good health and a long life.  The only thing we really know is that the donor was 34 years old, just two years older than Aaron.  That was an excellent match for him.  I'm so grateful to the donor and his family for the blessing to Aaron and the rest of our family.

I also wanted to thank all those that kept Aaron in their thoughts and prayers.  As the damage was more extensive and the surgery was more difficult than expected, all those prayers were much needed.  I mean to tell Aaron about all the people out there who are concerned for him as soon as I can go see him.  My daughter is not allowed in the ICU, so I will have to wait until I have someone to watch her or until he is moved to the floor in a couple of days before I can visit.  We are all so grateful for the outpouring of love we have felt.  please also say a prayer for the donor family that they will be comforted and know that their loss has helped make another life possible.

Out of Surgery

It took a long time to get this posted because the surgery took twice as long as anticipated and I was away from the house when I got word. Aaron is in his room now and my parents are with him.

The reason the surgery ended up taking so long is that there was a leak once the repair was in and they took him off the bypass machine. The surgeon said they had to take out the repair and put Aaron back on bypass so they could fix it. Because Aaron was on bypass so long he retained a lot of fluid and is very swollen in the face and lungs.

Everything is looking good right now. Aaron is awake and his breathing tube is out. He has asked for water, but he can't have any right now. All they can do is swab his mouth. My parents tell me he's looking pretty good and is responding to questions. If Aaron doesn't talk you know something is really wrong. :) I'm quite surprised that he's already awake and has the tube out. Dad didn't get his out until the day after surgery. Aaron is on pain meds and that seems to be keeping things under control. I don't expect that he'll remember anything about today.

The doctor also told my parents that the damage to Aaron's heart valve was more extensive than they originally thought. The endocarditis (infection) had left holes in his already weak aortic valve. We're so thankful that they moved the surgery up from the beginning of September to the beginning of August. A few days ago Aaron asked me if we had all noticed him getting weaker. I gave him an emphatic "YES" and he told me how glad he was that he had not ignored what he thought was only noticeable to him. I'm glad he's learned that he can't ignore anything having to do with his heart.

I know Aaron will welcome visitors when the time comes and I will let you know when that is. The only thing I can base my guesses on right now is my dad's surgery almost two years ago. Visitors weren't a good thing for Dad for the first couple of days. We'll see how Aaron reacts and if visitors help or hinder his healing. Aaron has fewer complications and other considerations than my dad did. Please continue to keep Aaron in your prayers.

Dad took a picture of Aaron after surgery, but before his breathing tube was removed.  I'd forgotten how much bigger ICU rooms are than regular rooms on the cardiac floor.  I guess they need space for a lot of nurses if the situation calls for it.  From this picture Aaron already looks better than I expected.  It's good that he's young and can recover so quickly.

Surgical Update

They didn't get Aaron into surgery as early as they expected.  He went in at about 8:20, rather then 7.  That seems to be fairly typical from all the procedures we've waited through with our dad.  The surgery is also taking longer than what my parents were originally told.  Aaron is still on the bypass machine and the doctor said that's normal.  My parents weren't sure when the surgery is expected to be completed, but that it's all good news and is going well.  I'll tell more when I know more.

Today's the Day

Aaron's surgery is happening as I type.  They should have started around 7 am and they expect the surgery to last three or four hours.  My parents are at the hospital waiting.  They were told a nurse would come out periodically and the doctor would talk to them after it was all finished.  I spoke to my parents an hour into the procedure and they hadn't heard anything from the nurse yet.  I would love to be at the hospital to wait with them and hear the updates personally, but having a two year old makes that difficult.  I asked my dad to give me updates so I could pass them along here and save them the stream of phone calls.

One thing I found out about the surgery recently is that replacing the heart valve also includes switching out some of the heart, veins, and other surrounding tissues.  I don't know how long they will have Aaron unconscious after they finish.  I know it wasn't until the next morning that my dad came out of it.  Aaron's surgery will not involve as much of his body, so I'm not sure if he'll come out of the anesthesia today or tomorrow.

On the financing front, it turns out that Medicaid denied Aaron's first application.  In order for a man to not be rejected outright on the first try he must earn less than $15,000 a year.  That works out to just over $7 an hour before taxes.  For someone who is paying rent and child support that's not even enough to live on.  He's applying again, as well as for other programs.  Considering that he needs this surgery to save his life, I would hope he can be approved by one or more groups.

Back to the Hospital (Overdue Update)

I really should have included all this information before, but I've been waiting until I have everything before posting it.  Aaron was doing really well for quite a while after the last post about his antibiotics.  However, during one of his exams the medical staff discovered that the spot on his heart valve where the infection had been was growing again.  That wasn't good, so more tests were ordered to see what was going on.  Thankfully, the continued growth was not the infection growing again.  There were several hypotheses about what happened, but they didn't really come to a conclusion about it.  The only conclusion that mattered was that the heart valve had to go.  With the spot continuing to grow for whatever reason, the risk of having a piece flake off and enter Aaron's bloodstream increased.  The outcome of that would have been sudden death or a stroke that would leave him a vegetable.  Those are not acceptable risks.

The replacement surgery is set for August 3rd, though we don't have an exact time yet.  For those that fast, this Sunday (the 1st) would be an excellent opportunity to include Aaron and his surgery in your monthly fasting and prayer.

We are very happy that the surgery is happening sooner than originally planned.  Over the past several weeks we've noticed Aaron getting weaker.  He tires more easily and just doesn't have the energy he did before.  It's been getting worse and has been a big concern for all of us.  Aaron has been slowly moving over to our parents' house to live.  He is expected to be in the hospital for a week after surgery and will be very limited in his activities for another month after that.  He won't be able to drive for (I believe) two weeks and he isn't allowed back to work for a month, either.  Being cooped up like that isn't really Aaron's idea of a good time, but it is preferable to death or complete incapacitation.

Aaron had an angiogram this morning in preparation for the replacement surgery.  He was told his valve was diseased (duh) and that there was a lot of back flow from the valve.  We kind of expected that, considering his weakened state over the past little while.  When the surgeon finally came in to talk to him about the results and the upcoming surgery it was suggested that they perform the surgery tomorrow.  Had there been a heart valve of the proper size available the surgery most likely would have been moved up to tomorrow.  The valve is on order and will be available in time for the surgery on the 3rd.  Aaron will have another week of anticipation and prep time before he goes under.  Please hope and pray for the best.

Continuing Antibiotics

Now that Aaron is home he's much more comfortable.  He still needs to get his antibiotics every day for another six weeks or so.  Today he went to the hospital to receive them.  While he was there they arranged to have the medicine delivered here so he can administer it to himself.  That makes everything so much more convenient.  He gets a week of treatments and doesn't need to sit in the hospital to get them.  One more step to getting healthy.

After talking to Aaron today I realized how close to tragedy he came.  A few more days and we probably would have lost him.  One of the doctors spent several minutes impressing that fact on his mind.  Modern medicine is truly a miracle.  If not for that he would have surely died, regardless of when he got to the hospital.  We are very grateful.

Home Again!

Right this very moment Aaron is sitting in my parents' kitchen.  Gone are the hospital gown and pants.  He still has the PICC line because he will continue to get antibiotics every day.  For a while he'll be staying at my parents' house.  I'm not sure how long that will be.  It is infinitely more pleasant than staying in the hospital.  We're glad he's home!

Tomorrow

It looks like tomorrow (Wednesday) could be the day Aaron is released.  Yahoo!  The doctors have decided against the surgery because his heart is stronger and functioning better than they originally thought.  Miracles are such wonderful things.  I didn't ask Aaron today if there was an estimate on when in the future he could expect that surgery.  We can just hope it never becomes problematic.

We're all excited that Aaron should be out of the hospital soon!  The nine days thus far are more than enough.

On to the Kidneys

Aaron called around 7:45 this morning to give us an update on what the doctors said.  Two had already been in that morning to talk to him about his kidneys.  He didn't elaborate much on what they said except that if his kidneys were functioning how they wanted they would probably release him today.  It doesn't seem to be any more serious than making sure he drinks a lot of water today.  Hopefully it clears up quickly.

Still Not Yet

Sadly there is no new information regarding the possibility of the valve replacement surgery.  It's looking like they won't go through with it, but we haven't gotten that word yet for sure.

As for the hospital stay...it's going to last until Wednesday evening at the very earliest.  The infectious disease doctor told Aaron his white blood cell count was up after he went off the antibiotics.  He's off penicillin and vancomycin, but they put him on another broad spectrum antibiotic (I don't know which one) to try to take care of whatever is after him.  Blood was drawn to make cultures and those take two days for results. 

We're very grateful that Aaron is comparatively healthy throughout the process.  He looked a little pale when we saw him yesterday, but that was likely because he went for his first "walk" since arriving at the hospital.  He's been limited to trips to the bathroom for most of the time.  We only walked as far as the lobby because Andrew, Charlotte, and Daphne came just as we got to the elevators.  It's just a blessing to us that we can walk the halls with smiles on our faces.  It seems like every time I go visit him there is another patient's family member in the hall with tear-stained cheeks and red eyes.  I feel for them because I know that it could easily be us.  I remember what it was like to be that person when it was my dad in the hospital.  We just keep praying that the doctors will do what's best to keep Aaron healthy.

Not Yet

Aaron is neither coming home today nor do we know about the plans for surgery or release. The best we know is that he was taken off the antibiotic Vancomycin because it can cause kidney problems if you stay on it too long. This morning the doctor said there has been some inflammation since going off that antibiotic. We weren't told where or how bad the inflammation is, but I assume it's on the aortic valve. Hopefully they'll have all the decisions made by tomorrow. Being up in the air about everything isn't fun for anyone.

If and When

It looks like Monday is the day to figure out exactly what will be happening with Aaron's surgery.  The doctors have all said they'll make the decision on Monday about when and if there will be a valve replacement surgery.  It could mean that Aaron will come home from the hospital tomorrow or it could mean that he will stay there and await the surgery.  His preference is to be allowed to come home.  If that decision is made it does not rule out the possibility of ever having the valve replaced, it just delays it until it is more medically necessary.  The estimate on that time frame is 10-20 years in the future.

There will be a few more tests tomorrow and those should be what determines the outcome.  Last I heard the cardiac surgeon was still the one to say it should be taken care of now.  As the doctors are all smarter than me when it comes to heart health, I trust their judgement of what will be best for Aaron.  We all just want him to be healthy and happy.

Fast Sunday

For those of you having Fast Sunday this week, please remember to keep Aaron in your fast.  We need the doctors to make the right decisions for Aaron's best health.  We hope that he will heal quickly and completely.

Today's News

Today was supposed to be slow in terms of Aaron's medical things, but I don't suppose that's never the case when it comes to a hospital stay.  They inserted a PICC line (a more long-term IV from which blood can be drawn and into which medication can be administered) in his upper arm because he has a high platelet count and his IV failed.  It also stops a good deal of the poking to get blood samples and give medicine.

The biggest set of news is that the valve replacement surgery is an "if" rather than a "when".  There are three doctors working with Aaron: a cardiologist, a cardiac surgeon, and an infectious disease doctor.  After the most recent echocardiogram it appears that the stenosis of the aortic valve is not as bad as they had thought.  The cardiologist and the infectious disease doctor both believe that a valve replacement is not necessary right now.  It will probably be a must in 20 years or so.  The cardiac surgeon believes that it should be done now rather than put off to a later date.  There will be more tests performed tomorrow and the doctors will look at those to make a final determination of what should be done.

Aaron's Story

Aaron Green was born with a congenital heart defect called bicuspid aortic valve. The general consensus from doctors was that the defect would eventually require valve replacement surgery. That time came sooner than expected.

In March 2010 Aaron started displaying flu-like symptoms. Without health insurance benefits the cost of a doctor visit for the flu were too high. Over the next several weeks Aaron illness became worse, causing him to miss work. When he started to feel stress on his heart he went to the doctor to see what was wrong. Blood tests showed a bacterial infection in Aaron's blood. The strep infection had reached his heart and attacked the weak bicuspid valve. On Easter Sunday he went to the hospital immediately for antibiotic treatment.

As Aaron's doctors consulted about his situation it was determined that the stenosis of the bicuspid valve had grown progressively worse over the years and the valve needed to be replaced to prevent his death. The source of the infection was removed and antibiotics continue to be administered every four hours. A minimum of two weeks stay at the hospital after the extraction is required before open heart surgery can be performed to replace the valve. An additional stay of 4-5 days after the surgery is necessary, followed by a few weeks of convalescing at home before Aaron can return to work.

Hospital and doctors costs will reach into the hundreds of thousands of dollars. Without insurance these costs it will be financially devastating. Other costs associated with being away from work for two or more months are also crippling. It is our hope to offset some of the costs and help get Aaron back on his feet after this major surgery.

For more information or to find out how you help, please contact us at helpaaronheal@gmail.com

Gathering Place

There are so many people who are concerned about what's going on with Aaron that it seemed best to have a place to keep all the up-to-date information for all who want to view it.  This will also be the place to come for fund-raising efforts that are in their early stages.  Aaron's family members are doing what they can to help and support him with what he needs, but there simply isn't enough.  Other resources are either very limited or nonexistent.

As it stands right now, Aaron is in the hospital for another two weeks before doctors can perform the valve replacement surgery.  Four teeth were extracted on Wednesday evening and that should take care of the source of the infection that is attacking his heart.  Aaron is receiving IV antibiotics every four hours and will continue to need them in the two weeks leading up to the surgery.  Doctors are discussing the three options for what kind of valve to use in the replacement: pig, human, or mechanical.

A pig valve is most often used, but most people who receive this surgery are over 50 years old.  It lasts 10-15 years before it needs replacing.  This one is not recommended because of Aaron's age and the number of replacement surgeries that would be required in the future.

A human valve includes the valve and part of the arteries leading to it.  This valve lasts 20 years and is one of the options being considered.

A mechanical valve requires no replacement, but Aaron would need to be on blood thinners for the rest of his life to prevent clotting on the valve.  This is the other option being considered.  No decisions have been made yet.

While it's not any fun to have to stay in the hospital for an extended amount of time, Aaron is optimistic about the road ahead of him.  He's also getting used to frequent needle jabs and hospital food. :)