The Journey of a Sweet Little Boy and His Special Heart

Sunday, December 9, 2012

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.
 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.

Friday, August 10, 2012

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!

Sunday, July 15, 2012

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!

Wednesday, May 16, 2012

The Happiest Place on Earth!

We went from one of the saddest places on Earth (the hospital) to one of the HAPPIEST places on Earth... DISNEYLAND
in a matter of days!  Logan was released from the hospital on Wednesday and we headed out on Sunday- can you think of a better place to recover?
Our trip was PERFECT!  Everything about it was perfect.  The kids were absolutely delightful.  We drove the whole way in one shot... with only 3 stops.  And the kids didn't fight or cry the entire time.  I guess this is when it is good that Logan loves to watch movies!

Here they are bright and early (6 am) Sunday morning so excited to be on our way!
Everything about the trip was great.  We had nice weather... not too hot, but not cold at all.  The crowds were not bad.  We didn't wait more than 20 minutes in line for any ride.  And we made some awesome memories!
Logan didn't love the rides, but he loved any kind of parade, show or climbing on things.  A few of the more mellow rides he warmed up to by the 3rd day, but he completely captured the magic of Disneyland.  He would start clapping anytime we got close to the park and he could hear the music.  He could pick out Mickey Mouse from a mile away!  He was SO much fun to watch.

 We made sure to get the closest hotel to the park so we could take him back for naps, and we never needed to.  He would crash in the stroller and take a good hour nap every day! 
 He LOVES Mickey Mouse, but in the stuffed pretend version!  The live characters were a bit scary up close, but he loved watching them and waving to them from a distance! 
 Climbing on his sister waiting for the parade!
 Lucky for us, Grandma and Grandpa got to come along!  They were SO SO helpful, and fun to have with us.  Just two more people to spoil the kids!
LOVED the beach!
Snuggles with Grandma
My cute, cute kids!

Chillin' watching TV... the hotel had the Disney channel on ALL the time.  So Logan ate breakfast better than ever because he was so glued to Mickey's Clubhouse we could get all sorts of food crammed in his mouth!
 He Loved the Disney Playhouse show and was so fun to watch dance and jump up and down with excitement.
 A ride that went the perfect speed for Logan!
And snuggles with his big sister!
It was so fun to see Logan have so much energy.  Being at sea level was a definite bonus, but I really feel like the things they were able to do in the cath lab are really helping.  He doesn't seem as winded and he is definitely full of energy!  Look at his awesome numbers... our entire family did the happy dance when we got home and hooked him up to see where his sats were being back at elevation!  We will take the 80's... we haven't seen a # that high for months! 

We are so incredibly blessed to be able to make all these awesome memories as a family.  Since having Logan, and being introduced into the CHD world we have definitely learned to cherish each and every day. 
(I took a billion pictures and will post more on our family blog).

Thursday, April 19, 2012

Cardiac Cath

I think Logan is catching on to what it means when we wake him up early, put him in the car without breakfast, and take a drive... a trip to the House on the Hill, aka Primary Children's Hospital.  He was very skeptical of what was going on this time.

He loved playing with the toys in the surgical waiting room, and was so ticked off when they took us back to our room because he still wanted to play with the train.  Although, getting weighed and measured was pretty exciting too because he got to see if he was as tall as Elmo and got to look at pictures of all his favorite characters as he got weighed. They are brilliant there with the kids!

 The lovely hospital get-up is a sure sign he isn't going to be a fan of what goes on.

 After meeting with the doctors Logan decided he would go ahead and drive himself down to the cath lab.  He was so funny.  Usually he needs a good dose of versed to calm his nerves, but he was so distracted by the toys we never even felt like he needed it.
 His anesthesiologist was one of my favorites so far.  He talked to us and put us at ease and then started working his charm on Logan.  He pulled out his I-phone and started playing games with Logan.  He got Logan to follow him out of the car, hold his hand and climb up onto the cath table without even looking back.  I kissed his head as he walked away.  It all happened so fast!
 Yes, that is him up on that huge operating table with NO drugs... only an I-phone!  I cried more than he did.  It makes it easier when you aren't handing a scared, crying child over to the doctors, but it is never easy handing them over and having to walk away.  This is Logan's 7th procedure in his short 23 month life where he has had to be fully sedated and intubated.  Doesn't seem fair. 
 The procedure took about 3 hours.  My stomach was in knots the entire time.  Thanks to our good friends the Quists we made it through those 3 hours.  Severin (Logan's heart friend) had just had a cath the day before and had to spend the night so they were still there that morning.  We hung out with them the entire time, and it was SO great to see Severin looking better.  His cath improved his color so much! 

My biggest fear sending Logan into the cath lab was that they wouldn't find anything "wrong."  Not that you want them to find anything wrong with your child, but we needed them to find answers into why he was having the symptoms he was having.  His cardiologist, Dr. Mack, was spot on in his guess as to why Logan was struggling.  His Pulmonary Artery had significant stenosis.  Dr. Gray tried ballooning it open 3 times, but it wasn't opening up enough so he ended up having to place a stent.  The stent is a metal mesh that can expand and contract with the artery.  It is something that will have to be replaced throughout his life as it is metal and won't grow with his body.  But opening that up with help the blood flow to his lungs significantly.  Dr. Gray also found the clamp that had been placed to close his Azgous Vein during his Glenn surgery had come off so this vein was huge, and working against him.  It took 2 coils to close this vein off.  Both of these things were causing him to de-sat.  He came out of the cath on room air holding his sats between 80-83% when he wasn't crying, and if he got really mad he would only de-sat into the low 70's instead of the 50's and 60's like before.
 The nurses LOVED him because he was so easily calmed by movies!  It was written in his charts that he is easily distracted by movies.  After the cath they are required to lay flat for 6 hours allowing the sights they entered to clot completely (they had to enter through his femoral artery in his groin and also in his neck).  So we watched Dora, Mickey's Club House and Elmo ALL day.  The crazy kid didn't fall asleep until 7:00 pm- of coarse.  Just enough of a cat nap to not want to sleep that night.  The bonus was when he finally fell asleep I was able to go visit with a fellow heart mom Chrissy and her sweet boy Matthew.  Matthew is 4 years old and waiting for his 2nd heart transplant.  He was absolutely delightful, and his mom is amazing.
 We raided the playrooms at 9:00 pm when he woke up and was finally able to move (thanks to Angee for the tips on which playrooms we could get to after hours)! 
 We walked every floor of the hospital, visited every fish tank, and tried to give him a break from his room as long as possible.  He would point at his door and say "go" all day.  This was the first time I have ever heard him say go.  So we would "go" as much as possible.
 The night was long, I didn't sleep a wink, but at least Logan did thanks to the big bed.  I would lay next to him because he would only sleep if he was touching me at all times.  We had x-rays taken early Wednesday morning and then waited for the doc.  Dr. Gray came back to check on him and said his x-rays looked perfect, the only concern is Logan was still a little puffy, but he said his body will probably take a few days to get use to the new pressures and blood flow.  So he send us on our way, and told us to have fun in Disneyland! 
We took Logan to the Forever Young Playroom on our way out so he left the hospital on a positive note.  He had a blast playing with everything, and didn't want to leave (but he kept tipping over from being so tired so we finally insisted on leaving).  Hopefully the toys are all he remembers from this visit to the House on the Hill!
Since being home Logan has been pretty tired and sleeping more, but seems to have better color and not so many blue spells.  We are trying to let him heal and not run and play too hard yet, but it will be fun to see if this makes a difference and helps give him the stamina and oxygen to run and play like a 2 year old should.

Just had to show his poor belly.  His skin hates all those blasted stickers they keep on to monitor him.