Not Knowing Was Easier

When Tin Man died, we didn't know what happened.  The doctors requested an autopsy to get answers.

The autopsy showed us what happened, but we were still left wondering why it happened.

His cause of death was pulmonary hemorrhage brought on by multiple (we are talking 100s) of blood clots in his lungs.  Not to mention the rest of his body.

The autopsy did show just how amazing his new heart was.  Doctors were so surprised at how well it was, and very little complications from all it had to go through those last 2 weeks. 

His death WAS NOT transplant related.


His death was caused by an error.  A huge mistake.


Last August I learned of a recall on a medicine last March.  Around the same time that Tin Man got really sick.

The recall was the blood thinner, Argatroban, that he was on. 

Learning this was like having to start the grieving process all over again.  He wasn't here because someone didn't check their product before shipping it out.

Reading the report on what could happen is like reading his autopsy report.


I started doing more research and eventually contacted a lawyer.

The lawyer helped get his records, sent his records off to 2 different pathologists (one in Tampa and other in Atlanta).  Both of them agreed that it was most likely the cause of death.

So we started going after the pharmacy records from the hospital.  Instantly they clammed up.  Took their sweet time returning phone calls and emails.  Finally someone did return an email.  Asking for time for them to look into it.

6 weeks later we finally get another email back.  They don't use the concentration that was recalled and because of this, they are declining to give us the records.

This is where things started getting weird.  After this email my lawyer stopped returning my phone calls and responding to emails.  2 months later.  He calls to tell me that he is bowing out since the hospital isn't cooperating.  Tells me that he thinks I do have a case, I just need to find the right lawyer.

So I am back to square one.  I have contacted several other lawyers, and all tell me they do feel I have a case, but they aren't willing to take it on.  One finally told me that the hospital is notorious for being a pain in the butt to go up against in court, even just for a subpoena, so I'm going to have a hard time finding anyone to take on the case.

I have 3 more phone calls and emails out.  After these 3 I am done.

I tried.  I spent almost a year trying to get justice for my husband.  Not just him but for my kids.  For the donor.  For his family.

Somewhere there is a family that made the decision to donate their loved one's heart to help someone else live.  Only to have that generous gift die a month later because of this error.

It just doesn't seem fair.  Not knowing what happened was a lot easier to deal with than knowing all I know now.

1 Year Already

1 year ago I woke up annoyed because I had so much to do that week.  I had IEP meeting, Tin Man had an appointment at Stanford on that Tuesday for a kidney ultrasound and some more blood tests.  I also had a doctor appointment and CT scan that week.

The following week, on March 12, Tin Man was supposed to be admitted for a week to put him on a new medicine to see if it helped his kidney function at all.  He was supposed to have several other tests done that week to get ready to list him for a kidney transplant along with a heart transplant.

We talked off and on that morning.  We were trying to finalize the plans for the following week.  Then at 12:05 PM he called me to tell me that Sarah (one of our favorite nurses) called to tell him they had a possible heart for him and that he needed to get to the hospital as soon as possible because they wanted to do a kidney ultrasound and some blood tests to see how his kidney function was.

That phone called turned my world upside down and inside out.

During the 15 months he waited for that call we made a list of everything we needed to do once it came.  Stop the mail, who was going to watch the kids, what we needed to bring with us to the hospital.  Who we needed to call.

Once that call came, those lists went out the window.  I was trying to get our things together, get the kids things together, call people, along with trying to finish up what dishes were in the sink, go through the fridge, and make sure the garbage got out.

Needless to say, things got pretty chaotic.

We got to the hospital around 2 and we waited for what seemed like forever before they came to take Tin Man back for his ultrasound and blood work.

This is a picture of Sarah explaining what was going to happen in the next few hours.

I couldn't sit for more than 5 minutes at a time.  I couldn't believe there wasn't huge worn paths in the waiting room from me pacing back and forth.  Finally around 9 PM they had found him a bed.  Well more like made him a bed in a room that was supposed to be private.  That's when the fun began.  IVs, more blood work, plasma transfusion, EKG, echo, everyone in and out explaining how things were going to go.  Not to mention my constant calling my in laws trying to find out where they were so we could determine if they would be there in time.


Once the mad rush of people in and out of the room calmed down, we talked about what we were going to do once he was released from the hospital.  Our plans.  He was so stressed out because we had to live near the hospital for 3 months after transplant and he couldn't stand the thought of being away from the kids for that long.

I still can't believe that was 1 year ago today.  Tomorrow marks the 1 year anniversary of his transplant.  It also marks the 1 year anniversary of his donor's death.  We don't know anything about him.  Just that he was much younger than Tin Man and his heart was much much stronger and healthier.  I would love to meet his family, but I do know they may want to remain clueless as to whether their loved one's heart lived on or not.

I can respect that, and whether I get to ever meet them or not, they will always be apart of our family.

Thank You Doesn't Seem To Be Enough

The last few days I've been trying to write a letter to Tin Man's donor family.  There's so much I want to say, but so much I can't say due to rules and all that.

Thank You just doesn't seem like enough.  Even though in the end we lost him, a transplant was his only fighting chance at a new beginning, but also living to watch his kids grow up.

I have talked to many donor families and some have told me they would rather remain clueless to whether their loved ones organs lived on or not.  Others have told me that they did choose to meet the family of a recipient that passed away after transplant and were very thankful they did.  That for them knowing that these people were still so grateful for the donor's decision made it worth everything.

During the 12 days that Tin Man was awake after transplant, we talked a lot about what we wanted to say to the family.  I hope that one day I do get to meet this family and thank them in person. 

These people have and always will have a special place in my heart.  The minute we got the call telling us they had a heart for Tin Man they became part of our family.

5 months and Donate Life Walk

Don't forget to enter to win a $25 Macy's gift card.

Its been 5 months since that horrible morning.  5 months since I made the choice to let Tin Man go.  That was one and will be one of the hardest choices I ever have to make.  In some ways it doesn't seem like its been that long and in others it seems like a lifetime ago.  Either way it still hurts.  I still have days that it doesn't seem real.  Times where I get excited when I hear a car door.  Then everything comes rushing back and I find myself in tears again.  I know this is normal, but normal or not, it sucks.



In honor of Tin Man and his donor, the kids and I walked the 2 miles on Saturday at the Donate Life Walk.

We walked it last year with Tin Man. Even though it took us almost an hour and half to walk the 2 miles, he finished it. He was so proud of himself, and even though I was annoyed with him because he was having problems breathing, but determined to do it, I was proud of him too.   After he got his transplant we talked about this years walk. It was the first big thing he planned on doing after transplant.

Even though he didn't get to do it, the kids and I decided this is one way we plan on honoring him, and his donor, every year.

It was hard. Seeing people that new and loved Tin Man.  These people deal with organ donation on a daily basis, whether it be a donor family, a receipiant, or a volunteer.  These people have their own stories to share, but to see just how much Tin Man's story impacted these people amazes me.  Not just his story, but who he was as a person.  He was just one of those people you couldn't help but love.  He had all the reason in the world to complain, but he never did.  He always found the positive things he could focus on.  That's one thing anyone who knew him remembers most. 

We had a picture of the kids and him from last year's walk that we carried with us.  This picture caused a lot of people to stop and ask about it.  The kids loved being able to share their dad's story with others.  Even though it brings a lot of tears, in some ways it brings on healing too.

We met one guy that was only sick for 4 years before his heart transplant. He told us that he couldn't imagine living his entire life with a sick heart. He was even more amazed when he found out that Patrick played baseball and hockey, plus marching band. 

They also had an area where you could write a message to your loved on on a butterfly and then plant it in the garden of butterflies. The kids and I each did one, but there was a total of 9 butterflies for Patrick. Seeing how much he impacted these people, who deal with organ donation on a daily basis, amazed me. Its just another reminder about what kind of person Patrick was, and also adds fuel to my wanting to continue honoring him and sharing his story.

There were many tears, but it was a great day. We got to see a lot of our friends and extended family, and we made new ones. The kids and I still aren't quite ready to jump back into being Donate Life Ambassadors full time yet, but we're slowly easing our way back into it.

Picking Up The Pieces

Yesterday was the local memorial service for my husband.  Now that the funeral and the memorial service are over, we not have to try to pick up the pieces and create a new normal.

New normal.  I hate the sound of that.  I don't want to create one.  I want the old normal back.  I want my husband back.  I want my kids' father back.  I want everything to go back to normal!

I've had many people make comments about Tin Man's old heart was good enough and why did we need to play around with it.

If Tin Man hadn't gotten his transplant, we still would have had the same outcome.  I don't think he would have made it to Christmas.  He was getting bad, and he was getting bad fast.  Not only was his heart getting bad, but he also had kidney involvement.  The heart transplant gave him a fighting chance.  Unfortunately, it didn't turn out the way we wanted, but I would do it all again.

I've also had people ask if we were done with Donate Life.  Um, no.  We need a little break from it, but we aren't done.  Tin Man got his transplant.  His transplant gave him a fighting chance.  Gave him the chance at a new life.  Even though that wasn't possible for him, doesn't mean someone else will have the same outcome.  I've met some great people who've received transplants, and without them, they never would have come into my life.

I plan on keeping Tin Man's story alive.  The kids and I have come up with some ideas, and once we're ready, we'll set them in motion. 

Our lives were turned upside down, and we have to give ourselves time to pick up the pieces, and then move forward and try to make something good come out of our loss.

Heaven Has Another Angel

Tin Man passed away on Tuesday, April 10th.

I'll post more when I'm in a little better shape.

Scary Moments

Its been 1 month since Tin Man got his new heart.  New heart is looking good, even with everything he's been through in the last week.  He was giving an amazingly strong heart, and one that I hope we get to enjoy very very soon.

If you'd like to Follow Tin Man's updates please like his Facebook page.  I update it on a regular basis.  I always forget or can't think straight to sit down and come up with a blog post.

We're at Stanford.  One of the best hospitals in the world.  So when a group of doctors, including the surgeons that did Tin Man's transplant look at you and tell you that we have never seen this before and we have no clue how to treat it, it becomes very scary, very fast.

We were even told that they had a group of doctors and med students going through medical journals looking to see if there was anything like this documented so they could come up with some ideas on how to fix it.

They were all taking guesses as to what to do to help him.  Thankfully their guesses worked and were able to get him stable and buy him some time to get his lungs to stop bleeding.

The type of ECMO machine he was put on, there's only 15 in the country, and Stanford has 3 of them.  Tin Man had 2 in his room.  The one he was on and a backup just in case he started clotting in the machine they could switch him over to the other machine.

I do know that if we'd been at almost any other hospital he wouldn't have survived, so I am very thankful to the doctors and nurses here.

He still has a long long uphill battle, but thankfully they were able to give him the chance to fight to recover.

This was taken last night.

Only Positive Thoughts Allowed

I am going to print something up for Tin Man's door that says Only Positive Thoughts Allowed.

Doctors are telling us a lot of negative things.  Which means they are talking about these negative things while they are all in Tin Man's room.  He needs to be surrounded by the positive things, not the negative.

Even in his sedated state, he's awake and responsive when you call his name.  I firmly believe that since he can respond to his name, that he can hear other things being said in his room.

So I'm taking a stand and not allowing any negative talk in his room.  This includes doctors, nurses, family, and visitors.

My mother-in-law thinks I'm nuts, but I don't care.  This is my husband, and he needs positive energy so he can get better and we can move past this and get on with the rest of our lives!

Giant Leap Backwards

Its been a rough few days.  On Tuesday Patrick was having issues with his blood pressure dropping, and then that evening his blood pressure and oxygen dropped low.  They got him stable, but by morning he was really bad.  They called at 8 to tell me that they were putting him back on the breathing tube and by 9 we were afraid we were losing him.  His oxygen levels were really bad and even with the breathing tube they couldn't get them much higher than 82. The realized right away that he was hemorrhaging into his lungs, and thought he had a blood clot in his lungs.  They put him on the ECMO (lung bypass) maching to buy him time to figure out what was going on and the best way to deal with it.

After getting him somewhat stable they took him down for a CT scan.  This showed that he did not have a clot, but he did have something in his airway.  After scoping his lungs they found that he had a large blood clot.  They tried to remove it Wednesday night but where having a lot of problems, so decided to wait until morning and take him into the OR.

Tuesday was a rough day, but nothing compared to Wednesday morning.  Nurse started calling me around 2 AM telling me that he was bleeding into his lungs again.  Then called around 2:30 to tell me that they were going to take him into the cath lab to see if they could block off the arteries/vessels that were bleeding.  At 3 AM the doctor called me for a consent.  At 3:45 the nurse called again and said that they were getting ready to take him to the cath lab, and less than 10 minutes later they called telling me I had to get to the hospital as soon as possible.

When I got there one of the doctors, one of my favorite ones, told me that Patrick was about as sick as he could get.  They were having a hard time putting the ventilator in because of all the blood in his lungs.  They finally got it in and took him back to the cath lab. 

Around 6:30 AM the doctor came out and said that it went perfectly.  That they were able to go in and block off the bleeders, and stop the bleeding.  Then they took him back to the OR around 11:30 to clean out his lungs.  When I signed the consent form, the doctor told me it would be about an hour.  That hour turned into 4 hours.  They were able to clean him out but everything going on in his lungs to do so caused them to start bleeding again.

I called at 9 PM for an update and was told that compared to last night that he's stable.

Today, March 30th, they are taking him back into the OR to clean out some more blood clots out of his lungs.  They were able to go down a little on the ECMO and he seems to be tolerating it.  Hopefully this is the last OR trip and we can work towards letting his lungs heal and getting him back on his road to recovery.

Stress Relief

This waiting room is driving me insane.  I've met some great people here, and I've watched most of them come and go.  Only 1 other family has been here longer than I have and they're going on 6 weeks. 

A week or so ago they painted it and missed painting the door, and also missed painting a huge part of the ceiling.  These 2 things are driving me nuts.

So I walk.  A lot.  I have walked all over this floor (2nd floor) of the hospital, and the 1st floor too.  This week I'm going to start walking up on the 3rd floor too.

I've walked outside a few times, but its been raining a lot, so I'm stuck inside.

Tin Man is doing a lot better.  Now our main focus is getting him strong enough to sit up on the edge of the bed by himself.  Then get him into a chair.

Tomorrow he starts intense physical therapy to help strengthen his muscles to get him ready to sit, and then eventually up and walking.

This is going to be the hard part because just getting up and sitting on the edge of the bed is a workout for him right now.

Small baby steps.  He's come a long way in just a week, so I'll take whatever we can get, no matter how small.

Still In The ICU`

This week feels like its been years.

Sunday March 11
They started waking him up and had me in there a lot talking to him and getting him to respond.  He had to be awake enough to follow 4 commands to get the breathing tube out.  He was able to follow one.  So they resedated him again that night and planned on starting again on Monday.

Monday March 12
Monday was not a good day.  His kidneys were causing him problems and his blood gases weren't good.  One of these blood gases your body uses as a signal to breathe, and since his was way to high, he wasn't getting that signal so he wasn't breathing on his own.

Tuesday March 13
The heart looked great, and they were able to turn the pacemaker off and the heart pumped great on its own.  Still had a problem with his blood gases and but he as breathing on his own a little.  His sodium levels were very high and they were worried about swelling around his brain.  They had to give him some fluids to help lower the sodium levels, but because of his kidneys he couldn't get a lot of fluid.  So they had to find the balance between the two.


Wednesday March 14
Wasn't breathing on his on again.  Between the fluid in the IVs and the extra fluid he was given because of the sodium levels.  Creatinine was on the rise, but the doctors were still hoping to get his kidneys to start working on their own.

Thursday March 15
Was doing better and awake enough to watch come videos of the kids.  Creatinine levels were 4.7 but they were still hopeful that his kidneys would bounce back and start working.

Friday March 16
They finally gave in and started him on dialysis because his kidneys weren't filtering the blood even though they were making urine.  They also stopped the sedation in the morning and gave him some breathing exercises to do.  Once they were sure he could do them, they removed his breathing tube!  This was a big day for him.  Even better was the kids got to see him.  Warrior is old enough to go back, but the nurse got special permission for Sugar Peas to go back to see him.  We all needed this.

He was full of questions and so confused.  At first he couldn't figure out why he was in the hospital or what happened to him.  Then he started to remember and asked if he got his new heart.  Then he told me that it feels really weird.

The nurse kicked us out so he could rest for the night.  Tin Man wasn't happy about it, at all, and made sure she knew it.

Saturday March 17
He had so many questions and was so confused.  So many things that had to get done and didn't before he got the call were on his mind.  He was worried about if the mail got stopped, about delivering Girl Scout cookies, and even about Warrior's exit project.

He finally calmed down when I told him I had everything under control and the only thing he had to focus on was getting better.  Then he started to tell me all the reasons why he did not like his nurse.  This was fun trying to figure out because he doesn't make noise when he talks yet.

I wasn't fond of his nurse, so I can only imagine how much he really hated her.  She didn't like him much either because he kept flipping her off.

Sunday March 18 (Today)
He's not responding much today.  His fingers and toes are almost black because of 1.  an allergic reaction to Heparin (which is new because he's had it before) and 2. a reaction to one of the transplant meds.  They are starting him back on blood thinners to see if this will help with the circulation and get some of the pain in his hands and feet gone.

They removed 2 chest tubes today and the wound vac which is a great step for the heart.  He's back on dialysis and his kidneys have stopped making urine.  Hoping that this is only temporary and once they're well rested from the dialysis helping them out, they will start to recover and he won't need a kidney transplant.

Unfortunately there is no real test at this point, and only time will tell us what's going to happen with his kidneys.

We have a Healthy New Heart!!!!

Now that things have finally calmed down and I can focus on other things I can give a recap of the last week.

MONDAY March 5th
Monday morning my biggest stresser was they were going to admit Tin Man for a week on March 12th.  I was so stressed out about this.  Looking back, I have no idea. 

Tin Man called me at 11:45 to tell me that he had talked to the nurse and finalizing the plans for his week vacation.  We talked about how things were going to work the morning of the 12th and about the kids and I coming up to visit with him on that Friday.  Since it was just a meds adjustment and tests on his kidneys, we didn't figure I needed to be there all the time.

We hung up the phone just before 12.  I had just got up to get ready to head to an appointment and Tin Man called me back.  He told me there was a change of plans and that they wanted him up there today.  I asked him why today (not even thinking about The Call) and he said that the nurse had called and said that they wanted him up there today.  I asked why because I had a lot of appointments this week.  He then told me that he didn't know, they just wanted him up there and wanted to know if I could cancel my plans.  I told him some but not all.  Then he told me to see what I could do.  Finally his co worker called him back and he had to tell her why he needed her to come in.

Once he finally told me that they called and said they had a possible heart I started sobbing and shaking.  Poor Sugar Pea was at home and looked at me like I had grown a 2nd head.  Finally when I could talk about I told her that daddy had received the call and that we had to go to the hospital.  She told me "That's good because I thought you were having a nervous breakdown."  Then she got excited and went to pack some of her clothes.

I had a list of people I had to call, things I needed to pack, and take a shower.  So many things to do and I couldn't get my brain to focus enough.  I can remember packing socks, but other than that I don't remember much.  I packed 1 1/2 packs of socks for Tin Man, dish towels (no idea why) flip flops, but they didn't match.  I didn't pack a single pair of my pants.  Nice huh?

Friends of ours showed up at our house at 1PM to pick us up, take us to the kids' school so we could tell Warrior what was going on.  He was annoyed because I called him out of class in front of all his friends, but then so excited when we told him what was going on.

Then we headed to drop off Sugar Pea off with friends since she was home sick, and headed up to the hospital.  We got here about 2:30 and went straight to the clinic.  One of Tin Man's favorite nurses (the one who actually the privilage of calling him about the heart) came out to meet us and explained that they were still waiting for a bed to put him in since they wanted to do a kidney ultrasound too.

We waited there for about an hour and half before Tin Man's doctor came out and told us to follow him down to the unit so he could see what was going on about the bed.  On the way down there we ran into one of the surgeons in the hallway.  He walked with us to the waiting room and explained to us how the rest of  the day/night was going to go.  He told us the plan was to take him back to the OR about 3 AM, but that could be pushed back.

So we waited some more.  Then the surgeon came back with the consent forms.  This made is seem a little more real, but both of us kept thinking it was going to be a dry run and that we were going to be sent home.  We even talked about how we were going to deal with how upset the kids were going to be when we came back home.

About 4:30 they came to get Tin Man and take him to do the ultrasound on his kidneys.  That's when I ran to get something to eat.  I felt bad going to get something while he was around because he wasn't able to eat anything.

About 9 PM they finally got him a bed.  It wasn't in the unit they originally wanted, but they settled for it.  Go him the bed and the parade started.  Xray, EKG, and blood draws were standing in line to get in to do their thing with him.  Once that was done there was more waiting. 

TUESDAY March 6th
Tin Man's mom and brother got to the hospital (from Southern California) about 1 AM.  Then it was more hanging out until they took him back to the OR at 3:15.  I was still convinced that it wasn't going to happen.  They were going to find something wrong and we were going to go home empty handed.

Tin Man was somewhere behind the doors at the end.

At 5 AM we were given the update that they had got the go ahead and had made the incision.

The waiting during this time was horrible.  Every thought went through my mind at least a 100 times each.  Finally at 10 AM we got the update that they were sewing in the new heart.  That was the longest 5 hours of my life.  This was also when it became real for me.  It was actually happening.  This is when the sobbing and shaking started all over again.

At 12 PM they came out to tell us that they were double checking things and getting ready to close him.

At  2 PM they came out and said that he was out of surgery and in ICU.  It was over and he had a healthy new heart for the first time in his life.  I jumped up and gave the surgeon a huge hug and thanked him over and over.

We didn't get to see Tin Man until almost 6 because they were having problems with his blood pressure dropping really low.  They finally got him stable enough for us to go in and see him for a few minutes.  I couldn't rest until I seen him and told the surgeon that much.

 Ivs anyone?

Wednesday wasn't bad.  They were still having blood pressure issues, but nothing they said wasn't uncommon.  So the 3 of us went back to my house to sleep since we hadn't been able to get a hotel in the area. 

THURSDAY March 8
Thursday morning I had some things I needed to do around town, one being temporary guardian ship for the kids, and other things that I had to cancel.  I was at the school getting emergency contact and everything set up for them when I got a phone call from the surgeon.

Tin Man's heart rate was all over the place, it would go really high and then really low.  It did this 3 times and they ended up having to shock him twice.  They called to get consent over the phone to put in temporary pacemaker wires.

We dropped everything and came up to the hospital.  I went back in to see him as soon as we got here.  I wasn't even back there 5 minutes when his blood pressure dropped to 60/40 and everyone come running in.  Watching 15 people come running into your husband's room is some scary stuff.  I was pushed back and unable to get out.  Listening to them, they thought he had a blood clot and were going to do a probe down his throat to look.

Finally they let me out of the room.  Tin Man's brother and I went down to get some coffee and while I was down there I looked at my phone and had a voice message.  So I listened to it and it was the ICU telling me I had to come back right away.  So of course this scared me and I came running back up here.  They wanted me to explain to me that they thought there was a blood clot pressing on his heart and they needed me to sign the consent form to take him back right away.

That surgery was 2 hours long.  When the surgeon came out he said that they hadn't found a blood clot but that the heart was very swollen and being compressed because it didn't have enough room.  The had to leave his chest open to give the heart room to pump.   They said they had to remove the excess fluid he had build up between all the fluids from the surgery and all the fluids he was getting in IVs.

Around 8 or so the nepherologist came to talk to me about his kidneys and that they were working as hard as they could, but it just wasn't enough and they wanted to start him on dialysis to help pull the fluid out of him.


So we ended up camped out in the ICU waiting room after that because we didn't want to go back to the house because it was to far away.

FRIDAY March 9th
The night nurse that night was awesome!  She promised me that if anything went wrong through out the night that she would come out to the waiting room and get me.  Gave me a hug and told me that he was young, strong, and already proved he was a fighter.

I didn't get that much sleep that night.  The chairs were so uncomfortable, and the 3 semi comfortable chairs, one couple claimed for themselves.

I watched the clock until 6AM so I could go back and see him.  Before I even got all the way through the door to his room the nurse was telling me that he had had a great night.  She told me that she wanted to come out to tell me several times during the night that he was doing great, but she was afraid that if I saw her come out that it would scare me so she didn't.

He still had some fluid on him, so they decided to let him rest and planned to close the chest on Saturday (today).

SATURDAY March 10th
Saturday morning I spent time with my kids.  I miss them so much and just needed some kid time.  We got to the hospital about 1:30 and they already had his chest closed and had put in a feeding tube.  Poor guy hadn't got anything to eat since 8 AM Monday morning.

I talked to the resident when I was back there and she told me that he was doing good, everything looking great, and blood pressure was awesome.  She said that if he was good today and tonight that they would lower the dosage on some of his drips and if his heart tolerated that well they would begin waking him up on Monday.

I am hoping we are over the worst of it and we can focus on recovery and then being able to do things most fathers take for granted, like playing with the kids.

Its been one very long, very stressful, but very exciting week.

Please say a prayer for the donor family.  Even in their time of loss, they thought about helping other people.  Tin Man's donor is now and always be our hero.

Wheeling Him Back

They wheeled Tin Man back to the OR at 3:15 AM (PST).

Now the hard part begins for those of us in the waiting room.

The Call We've Been Waiting For!!!!

We got the call today that they have a new heart for Tin Man!!!!!!! 

I'm not even sure what time the call actually came in.  I was to worried about everything we had to do and forgot to check the clock.

We got to Stanford around 2:30 and then had to wait, and wait, and wait.  Finally got him into a room around 9 PM and now we just wait some more.

Their plan is to take him to the OR around 3 AM, but that could change at any time.

Please please keep us and the donor family in your thoughts and prayers.

For more up to date info on what's going on, please follow Patrick's Long Road on Facebook

Upcoming Hospital Stay

Tin Man's cardiologists couldn't wait for the kidney ultrasound.  They requested a meeting with the kidney doctor today to come up with a game plan.

They decided to admit Tin Man to the hospital for a week (at least).  Tin Man is hoping they can wait until the 12th so we can try to get our car fixed.

They are going start him on some meds to see if they can increase the kidney function.  These meds will speed up his heart, so they want him in the hospital for this.  The docs are hoping that getting his heart to pump more will increase the blood flow to the kidneys and increase how they are functioning and decrease his creatinine levels.

This is risky because Tin Man's heart gets overly excited when it pumps harder.  Between the way his heart is formed and how sick it is, the top chamber and bottom chamber don't always work together like they should.  Instead they try to out do each other and he ends up with his heart rate in the 250s or so.  This happened one time while the kids and I were visiting him in the hospital.  Let me tell you, its some scary stuff.

So between his history and the unknown with his heart, we all would rather be safe than sorry and have him admitted for the time being.  

Right now he's Status 2 on the waiting list.  This means that he's able to be at home and not confined to the hospital.  While he's in the hospital he will be bumped up to 1B on the transplant list.  This will put him a little higher on the list, so who knows what will happen in that week.

Possible Kidney Transplant Too?

Yesterday we traveled up to Stanford for the appointment with the kidney doctor.

He really didn't tell us anything that I wasn't already expecting.  There is a fine line between the heart and the kidneys and living 36 years with a bad heart and then going down hill fast in the last 3 years, we knew this was a possiblity.

I love this doctor.  He fits in perfectly with our team of doctors.  He walked in and immediately started joking around with Tin Man and totally agreed with me that Tin Man seems to feel the need to make everything extra complicated.

He sat down and wanted Tin Man to explain as much as he could about his health in the last 3 years and everything that's happened at Stanford so far. 

He told us that he had skimmed through his medical records, but he likes to hear most of it from the patient because it gives him a better understanding of what type of patient the patient is.  He said a lot of people come in having to clue why they are there and can't really give much detail about what's wrong with them in general.  Then you have the patients like Tin Man that have a complete understanding of everything.

He went over the results from the blood tests (twice a month) for the last year.  He then explained to us that his kidney function has decreased by 50% just in the last year.  Right now his kidney function is at 35%.  He told us that this wouldn't be much of a worry if we were dealing with just the kidneys, but because of how bad his heart is, there's a huge worry that the kidneys are going to get worse before he gets his transplant.

A little detail on Tin Man's heart.  He was born with Transposition of the Great Arteries.  When he was 18 months old he had a baffle put in to help the 2 loops of blood pool together.  For whatever reason, this caused his heart to pump backwards, and his blood flows backwards.  Blood from the heart flows to the body, through the lungs, and back into the heart.  Now the baffle in his heart is narrowed.  He had a stent put in in July 2010, but even with that its still narrowed.  This narrowing and the fact that his heart isn't strong enough to pump normally causes the blood to back up into the lungs causing pressure build up in the lungs.

The doctor yesterday explained to us that the blood flow backing up into the lungs and the pressures are affecting the kidneys.  That the backup doesn't just stop in the lungs, but goes back into the kidneys too.  Which is what is causing the damage to the kidneys.

He said that in some cases the kidneys will repair themselves after transplant and all is fine and in other cases they won't and then things get really serious because bad kidneys and a new heart will only cause the new heart to over work and put us back in to a bad situation.

So he ordered a bunch of blood tests, urine tests, and kidney ultrasound.  Then once he gets those results back he will sit down with the other doctors on the team and figure out what will happen next.

Most likely a kidney biopsy and if that's the case, then he will need one done ever couple of months until he had his transplant so there aren't any surprises with the kidneys when that time comes.

The worst case scenario would be he would need a kidney transplant along with his heart transplant.  He did tell us to prepare ourselves for that because of his heart condition and the fact that his kidneys are declining so fast, that may be the route the team and transplant committee may decide to take.

I know God only gives us what we can handle, but seriously, he needs to stop thinking so highly of me and give me a little bit of a break.  At least just for a couple months.

A woman I've been following on Facebook, Sharlie, had her heart and lung transplant yesterday.

I was telling Tin Man about it and Sugar Pea over heard us.  She told me that she was happy and very sad at the same time.  She's happy that Sharlie got her new heart and lungs, but she's sad at the same time because so many people are getting their transplants and daddy isn't.

She knows what goes into finding a match and all that, but its the rare blood type that she's just not grasping.

Since Tin Man is B- they told us to expect a 2 - 3 year wait, which is one reason they decided to put him on the list when they did.  Since he's still doing pretty good (considering how bad his heart looks) they figured it would give us the time to wait it out instead of waiting until he was really bad off and then not getting one in time.

We've explained this to the kids, the cardiologists have explained it to them, and even the transplant surgeon they met with explained this.  Warrior understands it, no problem, but Sugar Peas can't wrap her head around it.

So I ended up with her in my bed last night because she's so upset.  She told me that she feels like a bad person because she can't be 100% happy that someone else got their transplant because she's still so sad that her dad hasn't gotten his yet.

I wish she had other kids to talk to about this.  I tried to take them to a local support group for kids with ill parents, but it was mainly kids whose parents have cancer and both Warrior and Sugar Pea told me those kids don't understand how they are feeling.

I asked social worker #6 or #7 about a support group at the hospital, and they told me that the don't have one for kids whose parents are waiting for transplants.  They only have them for kids who are waiting for transplants.

I've though about trying to start one, but the hospital is over an hour and half away and there wouldn't be much response for it in this area.

I've tried taking the kids to someone that they can talk to but the 3 people we've gone to, neither of the kids liked them and refused to go back.  That's one bad thing about living in a smaller town is there isn't many people to choose from.

Tin Man has an appointment with the kidney doctor on Tuesday and I've emailed and requested a meeting with the new social worker to see if she might be able to help us with the kids.

That's the only complaint I've had through this whole journey is the number of transplant social workers we've had and also that they don't seem to do much except constantly remind us that we need to do a lot of fundraisers.

Somedays I wish I could go to bed, sleep for a few days, and wake up finding out this was all a bad dream.

Another Social Worker and Doctor

Yesterday was a very long day at Stanford.  Tin Man had a cardiology appointment and we also met with the social worker and the surgeon.  We were prepared for the doctor to be behind schedule because it was the first clinic after vacation.  We joke about him being so far behind, but I can't complain.  He comes in and asks how things are going.  Not just with Tin Man, but he asks about me and the kids.  When he explains things he makes sure we understand what he's talking about and makes sure we don't leave the room if we still don't understand. 

Yesterday we went over the results from the heart cath Tin Man had done in December.  The pressures in the lungs look great, are actually better than they have been before.  However the heart function has decreased.  So doctor wants to do another exercise test to see where he's had now compared to 2 years ago. 

We were also told that they are bringing a kidney doctor onto the team.  Tin Man's creatinine levels were 2.3.  He said they would prefer anything below 1.7, but don't worry until they reach 2.0 or higher.  So now we wait for the call to schedule that appointment and the exercise test. 

Warrior and Sugar Pea went with us to interview the suregon.  Warrior is doing his graduation project on transplants and he had to interview someone who has first hand knowledge.  Who better than the surgeon thats been doing it longer than Tin Man's been alive.

Sugar Pea had her own set of questions to ask.  Like how they can make a normal healthy heart fit where he daddy's heart is since his is "all deformed and just not normal" (her words).  It was pretty interesting to here his explanation. 

We also met with our latest social worker.  This was social worker #8 or 9 and she told us that she is just temporary.  So we can expect to meet with a new one soon.  This is the only complaint I've had about this whole process.  We haven't met with the same person 2 times in a row.  Needless to say when we have questions, getting answers is tough.

This social worker was helpful as far as giving us ideas on who to talk to and what to research as far as insurance ideas and what we need to look into to keep Tin Man insured and on the waiting list if his employer does decide to do away with health insurance completely.

Kids go back to school on Monday, and we have several fundraisers in the works, and now researching insurance options. 

I need to clone myself so I can do 2 or 3 things at the same time.

Tin Man's Heart

I've had a couple of people email me asking what exactly is wrong with the Tin Man's heart or that they're confused because their brother's girlfriend's ex boyfriend's mom's sister's friend had a heart transplant and they said this or that was wrong.

This may get long, but here goes.

Tin Man was born with Transposition of the Great Arteries.  Meaning that the 2 main arteries were reversed.  Because of the anatomy of his heart he had 2 blood flow loops in his heart.  One sending blood from heart to the lungs and back into the heart.  The other sending blood from the heart to the body and back to the heart.

He was born at a time, and a place where they still weren't sure how to really "fix" this.  Not long after he was born he had a balloon cath to poke a hole through the wall between 2 chambers.  This would cause the blood to pool together to get some oxygenated blood to the rest of his body.  He was still very blue, but this bought the doctors some time until they could figure out what to do.

He had the Mustard Procedure done at 18 months old to put in a baffle that mixes the blood together so oxygenated blood is sent all over the body.  He was only the 2nd baby at that hospital to have this surgery.  After this surgery Tin Man's blood flows was reversed.  A normal heart the blood flows from the heart to the lungs to the body.  In Tin Man's case, the blood flows from the heart to the body to the lungs and back to the heart.  The blood flow from the lungs to the heart backs up into the lungs causing high pressures.  These pressures have caused some damage to the lungs already.

The doctors never expected Patrick to be very tall.  Little did they know his body planned to prove them wrong and he grew to be 6'4.  They figure he outgrew his baffle around the age of 9.  Nothing was ever said to his parents about this, so nothing was done to ever repair it, or make it larger.  So the baffle he has is narrowed.  They put a stent in it to help open it last June, but its still very narrowed.  The doctor explained it as a sink with clogged pipes.  Blood comes rushing toward the narrowed baffle and can't get through as fast as it flows, so it backs up into the lungs, which causes the high pressures.

In normal anatomy of a heart, a person with pressures as high as his wouldn't get a new heart because the new heart wouldn't be able to pump against these pressures.  But with Tin Man's heart, once the new, healthy, heart is in, the blood flow will be normal, so the blood won't be backing up into the lungs, causing the pressures to go to normal.

The anatomy of his heart also makes things much more complicated because they can't go by the same numbers like they would with a normal heart.

They also don't measure is EF (or Ejection fraction is a test that determines how well your heart pumps with each beat).  We did ask the doctor one time what his EF was and were told about 20, but that this wasn't an accurate test for him because its not a normal heart.

Every heart transplant case is different, but Tin Man's is very different because he doesn't just have a sick, weakened, enlarged heart, he also has a deformed heart.

The long journey

Tin Man was born with a heart defect called Transposition of the Great Arteries.  Now remember this was 36, almost 37 years ago.

When he was 18 months old he had open heart surgery called the Mustard Procedure.  This put a baffle in to help the oxygenated blood pool with the unoxygenated blood.








After that surgery everything was fine until he was 11 or 12.  He started having issues with his heart rate dropping at night so he had a pacemaker put in. That was the beginning of a lot of pacemaker surgeries between infections and broken wires.

Tin Man and I met in 1997 when he was 21 (I was 17) and he was fine then.  No problems.  At that time he was still seeing his pediatric cardiologist (which at the time I thought was odd.  I soon learned its because he couldn't find an adult cardiologist that knew anything).

Fast fast forward to 2004.  His pediatric cardiologist was retiring.  His replacement refused to take on an adult patient so we were without a doctor for him.  We spent several months calling cardiologists all over Southern California.  In Feb 2005 he got sick, and we both assumed it was a cold.  Then he started getting sicker and I was worried he had pneumonia.  Between his work and him being stubborn he wouldn't go to the doctor.  Finally I threatened to take the kids and leave if he didn't go to the ER.  I told them I wasn't having them wake up and find him dead in the bed.  So he finally agreed to go.  We were barely in the door when they threw him in a wheel chair and ran with him to a room.  We weren't even there an hour and they were in telling us that he was in congestive heart failure and they were admitting him.  He spent a week in the hospital getting meds adjusted and new meds added.

He was assigned a cardiologist then.  This was one doctor that we had called and was told he didn't know how to treat him so didn't want to take him on as a patient.  Ha!  Now he was stuck with him.

He didn't do much, just monitored medicines, blood tests, EKGs, and echos.

Come April 2007.  My grandma was in the hospital so my sister and I drove from California to Illinois to see her with 4 kids.  We were in Illinois for 2 weeks.  When I got home, Tin Man was sick.  Told me it was just  little cold, no big deal.  That night (I hadn't even been home 8 hours) he came and woke me up and said he needed to go to the ER.  Again we get there and they grab him and take him back right away.  This is when I found out that he's been sick almost the entire time I was gone.  His mother told him it sounded like her cold and that it was no big deal.  I was pissed!

Again he's in congestive heart failure.  This time he was only in the hospital 3 days.  When he was released we went to see his cardiologist a week later.  He decided that he wasn't comfortable just monitoring Tin Man anymore and he needed to go see the congenital doctors at UCLA.  We were happy.  You know, UCLA, great hospital, great doctors.  We knew he would be in great hands.

Boy were we wrong.

The doctors we saw were rude to us.  Treated us like we didn't care about his health so they shouldn't either.  Then told us that one of the medicines he was on screwed up his thyroid so they couldn't do anything until he got it checked out.  They told us he needed to see an endocrinologist and once he got into see one, to schedule another appointment.

They refused to give us a referral, told us to get one from his primary doctor or his normal cardiologist.  Both of those doctors told us that UCLA needed to give us the referral since they were the ones requesting it.  3 months of fighting between these 3 doctors and we finally got one from his normal cardiologist.

The endocrinologist told us that he didn't know why we were there, there was nothing wrong with his thyroid.  So back to UCLA we go.  Again they treated us like we were horrible people because it took so long to get in to see the endo.  They then told us that Tin Man wasn't sick enough to be there, and pretty much told us to get out.

In May 2008 we decided we were moving.  Tin Man's job was really bad.  We never got to see him because they required him to work 60+ hours a week.  If he tried to take a weekend off they threatened to fire him.  He was complaining to a friend of his and they decided to offer him a job as office manager of their tow company.

This meant moving 400 miles from home.  We went back and forth, but we finally decided to do it.  Tin Man moved up here in July to start work and find a place to live.  The kids and I stayed home because they were still in school (year round school) and so we could pack.  Once school was out the kids and I drove up.  We got there on Friday, school started on Monday.  So my poor kids didn't get a summer that year, but neither of them seemed to care.

At that time we thought our moving up here was because Tin Man needed a less stressful job and I wanted the kids in better schools.  Also moving away from the mother in law was a plus.  It wasn't until August 2009 that we found out the real reason was Stanford.

In the beginning of June 2009 Tin Man was fine.  We were again having a problem finding a cardiologist up here.  Hell we were even having a problem finding him a primary doctor.  No one was taking on new patients.  This was the downside to moving to a much smaller area.

We just finished school and were starting summer vacation.  A few weeks later he got sick.  We both figured it was a cold.  When we was still sick a few weeks later I knew that it wasn't just a cold.  He was determined to find a doctor and not make a trip to the ER.  July 12 he was getting out of the shower and noticed his lips were blue and decided to give up on finding a doctor and go to the ER.

We got to the ER and he couldn't even walk inside.  He walked 20 feet from the car to a bench and couldn't go any farther.  I went in to get a wheel chair and instead of giving me one, they played 20 questions as to why I needed it.  I told them my husband was sitting outside and couldn't breathe.  Once I mentioned heart problems, they jumped up and decided they should go get him.

When they got him into a room and hooked up to the heart monitor they saw that he was in A Fib, but ignored it.  They assumed it was normal for him, so they weren't going to do anything about it.  This is also the reason why this round of congestive heart failure wasn't the same as the last 2 rounds.

This damn hospital admitted him for less than 24 hours.  Gave him a few shots of Lasix and sent him home.  Thankfully they were smart enough to send him home with a referral to Stanford.

Unfortunately we couldn't get in to Stanford until August 26th.

Between the hospital trip and the Stanford appointment, Tin Man was sick.  He couldn't breathe and would get dizzy if he walked more than 20 feet.  He was in bad shape.

When we get to Stanford, we had a little way to walk to even get into the building let alone from the doors to the check in desk.  Tin Man being the stubborn man he is, refused to use a wheel chair.

They had to many people scheduled for echos so they were sending him to the other side of the hospital where the in patient echos are done.  From the car to the in patient echo area was about a half mile.  During the echo he was having a lot of trouble breathing, which the tech noted a few times.  Then after the echo he had to walk back to the doctors office.

We were called back to a room right away.  We were in the room less than 5 minutes before the doctors came in.  2 doctors.  One was a cardiologist and one was a pediatric cardiologist.  The cardiologist was telling Tin Man since he was a new patient they were going to admit him and run some tests.  He promised it would only be 24 hours, 2 days at the most.  The pediatric cardiologist was shaking his head, but didn't say much.  During this appointment they also found out that Tin Man's pacemaker wasn't working right.

That was on Wed.  On Thursday they spent most of the day trying to figure out what to do with the broken pacemaker and if they were going to remove it or just leave it and put another one in in his belly and snake the wires up under his ribs.

On Friday they took him back to do ct scan and internal echo.  I was sitting in the waiting room when the pediatric cardiologist, Dr. Talluto, walked past.  He saw me sitting there by myself and came over and sat down.  Told me no one should have to sit in a waiting room by themselves at a time like this.  I explained to him about the problems we were having trouble finding Tin Man a cardiologist and he told me he wasn't surprised.  That up until about 15 years ago not many kids born with heart defects made it to adulthood.  So cardiologists have no idea how to treat them.  He told me that he was a pediatric cardiologist but also worked as an adult congenital cardiologist.  Meaning he saw adults with congenital heart defects.

He explained to me what they were doing, what they were hoping the results would tell them.  Then told me what the next steps would be based on what the results were.  Even after they were done with Tin Man, the doctor told me he wasn't leaving until he was sure I didn't have any more questions.  That was the moment I realized that was the real reason we moved up here.  These doctors were the total opposite of UCLA.  They did and still do actually care about their patients, AND their families.

On Sunday I took the kids up to see their dad.  When we walked in I could tell by looking at him that he wasn't feeling good.  So I told the kids we were only going to stay for a little while so he could rest.  Both kids climbed up on the bed with him and were watching Spongebob with him.

I was slowly watching his heart rate rise from 140 to 150 to 160.  When he got to 170 he called the nurse and asked if he could have another shot of Lasix.  Apparently this happened earlier in the day and the extra lasix helped.

Not this time.  About 5 minutes after he got the shot he looked really bad.  He asked the kids if they could get up real quick that he needed to get comfortable.  He sat up and I swear it was like the exorcist.  Projectile vomiting everywhere.  I grabbed the kids and took them into the hall and then ran down to the nurses station.  Then I took the kids and we went and sat out in the waiting room.

After a few minutes I went back in to see what was going on.  At that point he seemed to be doing better and asked if I would bring the kids back in so he could apologize or scaring them.  I brought them back in and they barely walked into the room.  They were scared to get to close.  The nurse told them they could hug him that it was ok, and both ran up to him.  Which I think helped him.  Then we left.

On the way home there was a small 5 mile stretch where I didn't have cell service.  When I got home I had a voice message.  When I listened to it it was nothing but moaning and heaving breathing.  So I freaked out.  I called Tin Man right away.  First on his cell phone and no answer.  Then on his room phone and no answer.  Then I called the nurses station and was told that his nurse would call me back.

So I'm freaking out.  10 minutes later his nurse, not the same nurse from an hour before, calls.  After the kids and I left, things got really bad.  His heart rate went up to 250 and higher.  She explained that they put a line in his groin to push meds, they had to shock him to get his heart to slow down.  She told me that he was stable but he was in the cardiac ICU now.  She gave me the new number to his room.  I called him and first things out of his mouth was I'm in a room by myself and they told me you could stay all night.  Will you come up here.  I knew then that it was bad and he was terrified.

I dropped the kids off at a friend's house and rushed up there.  I've never seen him look that bad before.

The next day, on Monday, the doctor explained to us that the top part of his heart and the bottom part weren't communicating they way they were supposed to.  The bottom part of his heart sped up and instead of the top telling it to slow down it sped up too.

They said this put a damper on their plans because they weren't sure what else might be going on with it.

On Tuesday, Sept 1st they decided to go ahead and put in the new pacemaker and shock him to get it out of A Fib.  The surgery went well and if everything went well he was going to be able to go home in a couple of days.

Yeah, didn't happen.  He ended up with a collapsed lung from the surgery.  Then they couldn't get his INR (blood thickness) where they wanted it and didn't want to send him home until then.  They were worried about his heart flipping itself back into A Fib and throwing off blood clots.

Finally on Sept 8th, 13 days in the hospital, he was discharged.

March 2010 things got bad again.  Both of his doctors at Stanford, the peds cardiologist and the heart failure doctor, along with his dentist decided that since a transplant was in the future, removing his teeth would be the best route to go.

March 1st he had the surgery to remove all his teeth.  The surgery itself went well.  Waking him up from the surgery proved to be a big problem.  His oxygen level dropped into the low 70s and they had a hard time getting them back up.  So this landed him in the hospital for a week.

That was when they realized things were worse they they thought.  That his heart is so weak and tired that any little thing can push it over the edge.  They decided to get him on the transplant list as soon as possible.

This is where it gets complicated.  Because of the anatomy of his heart, his blood flows backwards.  A normal heart the blood flows from the heart to the lungs to the body.  In Tin Man's case, the blood flows from the heart to the body to the lungs and back to the heart.  The blood flow from the lungs to the heart backs up into the lungs causing high pressures.  These pressures have caused some damage to the lungs already.

Starting in April 2010 Tin Man has had many many many heart caths.  They wanted to know the pressures in his before and after they give him nitrous oxide.  The before numbers show them what the pressure is like right now.  The numbers after the nitrous oxide show them what the numbers will look like after he had a transplant.

Because he has a congenital heart defect, his heart caths have to be done by a pediatric doctor.  The pressures in a child and the pressures in adults are different, but the peds doctors were reading them the same for both.  In that case it looked like Tin Man was going to need a heart and lung transplant.

The first time his case was presented to the transplant committee they decided they wanted more info.  So another heart cath.  This one showed the same pressures.  This was also when they realized that the doctors were reading the pressures as they would for a child.  So his heart failure doctor went in and looked over the numbers and found out that they are a normal, a high normal, but still a normal range for an adult.

So again with this information they presented his case again to the transplant committee on Dec 3, 2010.  We got a phone call at 11 AM that morning telling us that he was accepted for transplant.

This was our Christmas present last year in 2010.

They Found A Heart!!!

Tin Man waited 15 months and 3 days for his transplant.  He got the call they had a possible heart for him on March 5, 2012 at 12:05 PM.

That 1 phone call turned our lives upside down, and little did we know, it would have a devastating out come.

We got to the hospital at 2:30 pm, and had to wait.  They wanted to do a kidney ultrasound because we'd found out only 2 weeks before that there was a good chance he would need a kidney transplant too.  Kidneys looked good, and everything was a go.

They took him back to the OR at 3:15 AM on March 6th.  At 5 AM I was updated that they got the go ahead and had made the incision.  10 AM another update telling me they were sewing in the new heart.  It really happened!

He was out of surgery and in ICU around 3 PM.

Almost immediately he started having complications with his blood pressure bottoming out.  2 days after transplant they had to take him back in for emergency surgery because they thought he had a blood clot around his heart.  There wasn't a blood clot, but his heart was swollen to twice its size, so they had to leave his chest open for 2 days to allow it to have room to pump while they get the swelling down.

After this complication was over, then started having problems with his kidneys.  Kidneys weren't wanting to work, and because they weren't working the way they should, his blood gases were all out of whack and he wasn't breathing on his own because of it.  Instead of sticking him on dialysis, they forced his kidneys to work until they shut down.  On March 16 they (finally) put him on dialysis, and instantly his blood gases were better and they were able to remove the breathing tube in just a few hours.

I am so thankful that the kids were able to come up and see Tin Man that day.

Tin Man had some complications with the medicines and his fingers and toes turned black.  Really black.  But for a week and a half, those were the only complications.  He was doing great.  Joking with the nurses, begging to eat food, and even asking when he could go home.  At one point he was going to unhook himself and check him out because the nurses were pissing him off.

Tin Man had his first heart biopsy on Monday the 26th.  4 samples taken, and all 4 showed 0 rejection!  His body had accepted the heart with no problems. The doctors told us this wasn't common in adults and that there probably wouldn't have been another heart that was more perfect for him.

We were both so excited.  This mean he was finally on the road to recovery and we could start making plans for everything he would finally be able to do.

On Tuesday March 27th he was so excited when I got there.  He had passed the swallow study and they were going to let him eat the next morning.  He had a little problems with his blood pressure being low, but they didn't think much of it.  That evening his oxygen and blood pressure dropped, which concerned them.  He also coughed up what we thought was a little bloody mucus.  I stayed at the hospital until his blood pressure and O2 were back up to normal and then went to the apartment across the street from the hospital to sleep.

Just before 1 AM I got a call telling me that he was having a little trouble breathing and they were going to put him on Bipap.

Just before 8 AM  on Wednesday the 28th I got a call that they were putting the breathing tube back in and that Tin Man wanted to talk to me before they did it.  I got to tell him I loved him, and he told me the same.  It took less than 45 minutes to get dressed and get to the hospital, and in that time he got bad, really bad.

We were told that if his brother wanted to see him alive, he needed to get there and fast.

They weren't sure what was going on but they thought he had a blood clot in his lungs.  I was praying he didn't, but now wish I had been praying that's all it was.

They put him on an ECMO machine (lung bypass) so they could buy him some time to figure out what was going on.  Once they got him stable (8 units of blood later) they did a CT scan.  This showed that he did not have a blood clot, but that he had something in his lungs.

This was when my world was turned upside down.  They did a scope into his lungs so they could see what it was and try to remove it.  The things in his lungs were blood clots.  The insides of his lungs were bleeding, and not sure how long they had been before it caused problems.

Early in the morning on the 29th the phone calls started that they were having problems with the ventilator because he was bleeding in his lungs, a lot of bleeding.  Finally at 4 AM I got the call to get to the hospital as fast at possible.

When we got there we were told that he had been without oxygen for a while because he was bleeding so much that his lungs had filled with blood and there was no room for oxygen. So on top of everything going on with his lungs, they were afraid of brain damage too.

They took him into the cath lab that morning to insert clots in the area that was bleeding in hopes to stop the bleeding.  After the bleeding stopped, they took him into the OR to do another scope and to clean out his lungs.  Later that afternoon his lungs started bleeding in another area.

That evening we were called in to talk to the doctor and heart transplant nurse practitioner.  We were told they've never seen anything like this before and weren't sure what to do.  They had 2 options and the teams were trying to figure out which was the least dangerous and least likely to kill him.

They finally decided to stop all blood thinners (which were required for being on the ECMO) but keep him on ECMO to bypass his lungs in hopes that they will stop bleeding. This meant having a backup ECMO machine in his room, so if he did clot in the machine they could switch it right away.  Thankfully he kept clotting in the dialysis machine, because that was a lot easier, and safer to switch out.

They finally took him off ECMO on Monday April 2nd.  He did good.  Pressures in his lungs were a little high, but the heart was doing good dealing with them.  A day or so later they lightened up on the sedation a little so they could get some idea on where his brain was at.

I went in to see him and when I said his name he opened his eyes.  I was so excited by that.  Then when I asked if he knew who I was he nodded his head.  Then I asked if I was random people and he shook his head no.  The nurse asked him if I was his wife, and he said yes.  I was so happy to know that he was OK!

He was doing good until Saturday the 7th.  When I walked in I could tell that he had had some issues during the night because he was on a new medicine, and his numbers were kind of low.  I felt bad, but we had already made plans to hang out with the kids at a gokart track near the hospital.  So against my better judgement, we left.  I had been away from them for a month and they needed time with me as much as I needed time with them. 

About an hour after we left I got a call I knew in my heart was coming.  Tin Man coded, twice, and had to have chest compressions.  The pressure in his lungs were high and his heart was starting to have issues pumping against them.  They decided to put him back on the ECMO to buy him some more time so they could figure out what was going on.  His lungs weren't bleeding again, they were sure of that, but they didn't know what was causing the pressures to get so high.

We rushed back to the hospital so I could sign the consent form and then wait.  It took about 2 hours to get him on the ECMO and almost immediately he was doing 10 times better.  Again they were worried about brain damage and all, but the main focus was on figuring out what was going on.

On Sunday he was good.  Stable, O2 great, pressures in lungs were a little lower.  Everyone was sure he was slowly headed in the right direction.  They were going to give his body a chance to rest and then assess the possibility of brain damage in a few days.

That all changed by Monday morning.  When we got there I was met at the door to his room by the nurse practitioner telling me that the pressures in his lungs were even higher (104/54) and they couldn't figure out what was going on.

About 2 hours later we sat down with the surgeon, another cardiologist, the NP, and the social worker to go over what was happening.  I knew then that we were losing him.

The surgeon told us in his almost 40 years of doing this, he's never seen anything like what was going on with Patrick.  He told us that they had 1 last ditch effort to try, but he wasn't optimistic it would work.

So I called and had friends bring the kids up to the hospital so we could prepare them for what was going on and what could happen.  I had to look my kids in the eyes and tell them that their dad was dying.  The kids handled it a lot better than I did.

I had explained to both of the kids that Tin Man wasn't responsive, but he could hear them so they could tell him anything they wanted him to know.  Sugar Pea was first to go in and she walked up to his bed and told him that she loved him and he took a big deep breath and tried to talk to her.  This scared the nurse, the girl running the ECMO, and me.  He hadn't been at all responsive since Saturday morning. 

I told him he couldn't talk because of the breathing tube, but that she could see his eyes.  I asked him if he loved Jazzy too, and he started blinking his eyes really fast.

When Warrior went in he got the same reaction.  I am so thankful that Tin Man made that last struggle to let them know that he loved them.

Just before 8:30 on Tuesday April 10th, I got a phone call telling me that he wasn't doing good and we needed to get to the hospital.

When I got to his room I knew he was gone.  It didn't feel like Tin Man was there anymore.  I hoped and prayed that I was wrong, but I knew in my heart that he didn't have the strength to fight anymore.

At 9 AM I told the doctors and nurses to stop everything and shut everything off.  That was the hardest decision of my life. 

Tin Man died peacefully at 9:07 AM on April 10, 2012.

Not only were we sobbing in the room, but his primary ICU nurse was, the NP, and even his heart failure doctor came in and was crying with us.  We were told that Patrick and I went beyond being a patient and his wife, but we became part of their family.  No one wanted to see this outcome and everyone was praying just as hard as we were that things would have ended differently.

The doctors requested an autopsy to see if they could get some answers as to what happened.  I was going to request one myself because I need answers.  I had to wait 6 weeks for the results.  I got a call May 31 that they report was in and they wanted to schedule a time for me to come up.  I couldn't that day.  It was Warrior's 8th grade graduation.  It was already hard enough and I wasn't about to ruin his day. 
 
On June 6th, 3 months to the day since he had his transplant, I sat down with the transplant surgeon and the heart transplant nurse practitioner to find out the results of the autopsy.  The autopsy showed that Tin Man had 1000s of micro blood clots all throughout his body.  We were told that they stopped counting after 400 clots in just his lungs.  The first area, the lower right lobe, where the bleeding in the lungs first started, was about 2 - 4 weeks old.  These blood clots cut off the blood flow to that part of his lung, causing the tissue to die off.  This is what started the uncontrollable bleeding.  Over those last 2 weeks he started forming clots all throughout his body.  The clots in his lungs caused the pressures in his lungs to get higher and higher until his heart couldn't pump against it.   They did tell us that he received an amazing heart.  That it put up with so much more than they ever would have imagined.  Even after all it went through and how hard it had to work, it still looked pretty good.

They don't know what caused the clots.  He was on such high doses of blood thinners that he shouldn't have been able to form clots.  Let alone as many as he did.  Unforutnately this is something we will never know the answer to.  UPDATE:  I found out in August of 2012 that the blood thinner Tin Man was on in the hospital was also being recalled at that time.  It had visible particulates in it, and if these contaminated products were used it could cause multiple emboli and multiorgan failure.  Everything I have read reads just like his autopsy report.

The surgeon did tell us that they did learn a lot from the autopsy and what they need to do more clinical testing on in the near future.  Hearing this helped ease my mind because they were able to learn something from Tin Man's death that will help others.  This makes me feel like Tin Man's death wasn't for nothing.

I think about Tin Man's donor and that person's family a lot.  My heart is breaking because my husband is gone, but my heart breaks for them too.  From the minute we got that phone call, that person became my hero and their family became part of our family.

I may never get to meet them, or write to them, to thank them, but I hope they will always know that I am and will be forever thankful that they gave my husband a fighting chance at a normal life.