Appointment Update

I am a month late on this update, but better late than never right?

We had Logan's 6 month check-up with his cardiologist in November.  Not much has changed from his last appointment. 

His sats are holding between 78-82% most of the time. 

He is gaining weight remarkably well (he has almost hit that magic number of 30 lbs- for those of you not in the thick of the heart world it is a huge milestone and goal to get your heart kiddo to 30 lbs before the Fontan surgery). 

Logan was pretty edgy during his appointment.  He remembers pain, and was scared of everything. 

The EKG stickers were traumatic, blood pressure was traumatic.  He was okay with the Dr. listening to his heart, but watched him very close to make sure he wasn't going to pull any shenanigans and hurt him.

The real trauma started with blood work and x-ray (I don't blame him).  After the x-ray they needed him to have an ultra sound to get a better view on a little lump they found on his rib cage (which turned out to be nothing concerning).  But by this time I was not just having to hold him down for a poke, but actually having to lay on the bed with him and hold his whole body down.  It was so scary for him and after being poked he didn't trust us when we told him ultra sounds don't hurt. 

It broke my heart. 

I thought of a blog post a fellow heart mom posted about her last moments with her daughter before she passed away were holding her down for a blood draw.  If I didn't have to do it, I wouldn't.  I cry for him and kiss it better and spoil him rotten afterward praying and hoping I get to keep him a LONG time on this Earth.  And that one day he will understand why. 

So what now? 

This is a question we get all the time. 

We wait.

We asked his doc when he thought Logan would need the Fontan.  His answer was, "Logan has never done anything by the books so I don't even have a guess.  It could be as soon as this summer or he might surprise us and make it until he is five before needing it."

We are hoping to wait as long as possible (within reason).  As long as his oxygen sats can stay above 76% on a consistent basis and he is happy and able to do all he wants to do, we will wait.

I love his cardiologist and I love that I can ask him anything.  I had a list of a million questions and he took an hour with us answering everything and explaining everything in great detail (I am sorry for anyone else who might have had an appointment that day).  I still hang on to the hope that somehow we can save Logan from becoming a complete single ventricle.  I asked all about a Dr. at the Mayo Clinic and procedures he is able to do on the Tricuspid Valve.  He confirmed what I feared, Logan no longer has a functioning Tricuspid Valve at all, so any hope of restoring that is gone.  The only route at the present time is the Fontan.  We are praying stem cell research keeps advancing and who knows what kind of options will be out there in the next 10 years for our boy.

HOPE

 That is what I can hold on to.

This is the only picture I got of the day.  I think he was asleep before we left the parking lot.

Phew... we don't have to do that again for another 6 months.

The Virus from....

You can fill in the blank! 

 Logan was lucky enough to have the nasty hand, foot, and mouth virus find him this summer.  We had heard it was running rampant around the valley, but had thought we had escaped it... that is until the 24th of July. 

Logan woke up so ornery and felt a little warm, but only had a mild fever of 99 degrees, so I thought maybe he had just over exerted himself at the zoo the day before.  He fell asleep as I rocked him (he never does that) and when he woke up he spiked a fever of 105 (and that was with ibuprofen already in his system).  I was freaking out just a tad!  I  hurried and put him in a luke warm bath with a  popcicle, and got his temp down to 103 and took him into the Doctor.  At this time his only symptom was a fever so I was stumped. 

Since it was a Holiday (Pioneer Day here in Utah) his Doctor's office was closed so I took him to their "sister" facility that has access to all of his records.  Worst Dr. experience EVER.  If I would have had to pay a dime I would have demanded it back.  The doctor came in and after I told him what was going on and briefed him of Logan's heart diagnosis, he looked afraid to even touch Logan, and said, "Well, I am not an expert in kids with Hypoplastic hearts because everyone I have ever known with that has died."  Yes, he said that to me with my 2 year old with HRHS sitting on my lap.  My jaw dropped and I just stared at him and said, "You NEVER say something like that to a mom."  In the Doctors defense I don't think he meant to have it come out like that and he really started back pedaling, but by this time he had lost all credibility with me.  I told him to look in his ears and run a strep test and I could monitor the rest.

Anyway, this was the WORST virus we have ever dealt with.  He had blisters all over his tongue, down his throat, all over his mouth, arms, hands, feet, legs and bum.  So he couldn't eat, he didn't want to sit on his bum.  It was brutal.  And his mouth hurt so much that even the pain meds hurt to eat with all his blisters in his mouth.  It took a full 2 weeks for him to start feeling better.  He got really good at saying the word "owie." 

Poor kid.

The Silver Lining of it all though.... he kicked the binky!  (Okay so I thought it was a good thing, but now I am really missing his "plug!")  I thought he would have his binky until he was 5, but with all the sores in and around his mouth he didn't want it, so we decided it was the best time to get rid of it.  And even though we tried to only give it to him and nap time, since we have taken it away he has been talking so much more.  So crappy virus, but yeah for kicking the binky!

A small thing, but a BIG deal!

Logan will FINALLY take his Aspirin on his own!

Logan is terrible at taking medicine- I dread giving him medicine more than changing a nasty poopy diaper!  He is a fighter and hates all medicine.  So even his tiny, little half of a baby aspirin I have had to crush and hide in his food EVERY day... until now!!!!!!!  Can you tell I am happy about this.  I just gained an extra 10 minutes every day!  He is in a "I can do everything myself" stage and wanted one day to get his own medicine out of the bottle.  So I took 1 dose and put it in an empty bottle and let him dump it in his own hand and he ate it.  SHOCK!  He has done it for a week now, so let's hope he keeps it up. 

He also thinks he is a dog sometimes and loves to lick food off the table and out of your hand ( I know disgusting) so he will sometimes let me put his medicine on the table and he will lick it up like a puppy.  Strange kid... (I have had to stop him from licking up water from a puddle outside- he literally crawls around barking and wants me to pet his head)!  I can handle the dog phase if it means he will take his meds without a fight.

Heart Friends

Every July my childhood friend Caryn comes to Utah for a family vacation and they always find the time to meet for lunch or dinner.  Caryn and I knew each other when we were really young and then were reconnected through facebook right before Logan was born.  Her oldest son Brayden is a CHD warrior, and they have been a beacon of HOPE for us all along the way. 

 Brayden and Logan

 He is such a cute kid and was trying to get Logan comfortable with him.  He showed Logan his scar and let him hold his hat!

 Look how big our boys have grown.  This was in July 2010 right after Logan's first surgery.

I love seeing Brayden and hearing him talk like his heart is just a normal part of life.  He is living life to the fullest and a living miracle. 

Trouble and Summer Fun

Even with all the fun we have been having this summer, Logan has still managed to find time to get into trouble.  I am telling you, this kid is 100x worse than my other two when it comes to being mischievous and getting into trouble.  Logan has gone through a hiding stage where he thinks it is really fun to hide.  The crazy thing is he will hold still and be quiet when he hides.  The picture below shows him hiding in the dyer.... scary.  He had no idea Brad snuck a picture and he got in BIG trouble for hiding in there.  Ashlyn had gotten me something out of the dryer and forgot to shut the door (something that will never happen again I hope) and Brad saw Logan head in there a minute later so he followed him in.  Lucky for us he was only in there for a few seconds, but he has given us a few scares when he hides from us.  I can't turn my back on him outside for a second because he thinks it is so funny to hide.  The other day he was wearing a red t-shirt and went and crouched down by a fire hydrant hiding from me.  He blended right in, I was in a complete panic getting neighbors to help me find him and he just sat there quiet as can be as we screamed his name.  We have been trying to not make a big deal about his hiding so he won't think it is fun, and will hopefully stop doing it the little stinker!

Do you like the oxygen hose on the floor, he has started pulling all his hoses off when he wakes up from his naps too.  Trouble, I tell you!  My father-in-law always says he would hate to see what Logan could do on a whole heart because on his half a heart he keeps everyone chasing him and on their toes!

 We played a lot the end of June with my parents when they were watching my sisters kids.  We did a lot of fun things.  We missed Ashlyn (she was still in school, I HATE year round school).

We played at the Zoo.

 Thanksgiving Point Farm

 The Dinosaur Museum

 The Cabin- this was our first trip to the cabin this year.  We were nervous with Logan's lower oxygen levels that he would not tolerate the elevation, but he did pretty good.  Still not good enough I would dare spend the night, but a few hours was fun.  He was a little more tired and grumpy by the end, but we expected that.  He kept his O2 levels around 74% so not awesome, but not too bad for him!

Happy Birthday

(delayed post)

It is hard to believe my baby is 2! 

I still refer to him as my baby... maybe I should stop referring to him as my baby because he calls himself a baby now too!

Logan still LOVES Elmo!

His Birthday was Monday, May 21st (still playing catch up on the blog).  We had some family over the night before for dinner and a pre-birthday celebration (at our house it is referred to as Birthday Party weekend... you get to celebrate your birthday over the coarse of a few days).  

Ashlyn and Tanner had so much fun helping me figure out how to make the cupcakes, and were great decorators.  Logan's reactions are always animated and fun- he loved eating Elmo's nose! 

 He had a great time opening his presents and was just as happy with the paper star his sister made for him as he was the wagon mom and dad got him! 

What better way to spend your birthday than at the doctor.  I know what a mean mom I am for scheduling his appointment on his birthday- sometimes you just have to take what you can get.  It was his post-op/ follow up appointment from his cath.  His sats are holding steady in the low 80's, and everything else is looking good.  Dr. Mack doesn't need to see him for another 6 months.

 The picture of me holding the banana is how we get things done around here... I have to bribe him to hold still long enough for me to get a good reading on the pulse ox.  And I might as well kill two birds with one stone as I have him captivated with my phone I can cram a few extra calories in him as well!

That afternoon (after doctors and naps) we had the neighbor kids over for cupcakes.  At first he wasn't a fan of everyone else eating his Elmo cupcakes, but he warmed up to the idea and I was happy to have them all gone!

We love this kid, and can't imagine life without him.  I was talking with a friend the other day and she said she was so sorry about all we have gone through, and she can't imagine how hard it is.  My response was that I am not sorry.  Sure, I wish that Logan didn't have to go through everything he has, but I can't imagine life any other way.  I try to think about where we would be in life if Logan had been born "healthy" and I just see a big void.  He has taught us so much, and we have grown so much since he came to our family.  And I don't look at our life as hard... we are truly BLESSED.

Happy Birthday Logan!

Annual Heart Run

Intermountain Healing Hearts- an amazing organization/support group that we belong to held their 2nd Annual 5k Heart Run in May (I know, I am a little behind on the blog)!  We look forward to these events as a family every year, and love to meet and interact with other heart families.  It was a privilege, and completely humbling to run in honor of our little boy and other heart kids who are not physically able to do so.  Sure Logan runs around, I am not saying he can't run, it is just taxing on his little heart.  He can run about 10 feet before he is so out of breath he has to sit down and rest to let his little heart catch up.  So we ran for him!  He was a great cheerleader along with Ashlyn, Tanner and Grandma.  (Next year Brad and I vow we will actually train for it first so it doesn't nearly kill us)!

 I know I am biased because they are mine, but I think I have pretty cute kids! 

 These ladies are just a few of the amazing heart mom's I have been able to connect with.  All of our kids have a similar diagnosis of HRHS and are within a few months in age.  Angee and Severin on the left, Joanita and Kat in the middle and Logan and I.  We feel so lucky to have these AMAZING kids as part of our family, and I am so grateful for other moms who just "get" me!