Buzz Lightyear to the Rescue

 

We live in a world of make believe around here, never a dull moment!

Logan lets us know daily whether he is Buzz Lightyear, Lightening McQueen, or Logan G, and we have to refer to him by the chosen identity for that day.

We have wondered at times if this is "healthy" because I am telling you he will not answer to Logan if he has decided to be someone different, and every word that comes out of his mouth will be in reference to his character.  We never just brush his teeth.  We are either putting Rusteez on McQueen or washing Buzz's helmet.  We need to eat our meals so we can drive fast and win the Piston Cup or have energy and power to fight the evil Zurg.  The whole family takes part in this make believe world and we are assigned characters (we never get to choose)!  Brad is most often Woody, I am Jesse, Tanner is Slinky the dog and Ashlyn rotates between being Jesse or Bullseye depending on if I am around.  We also get assignments of being TowMater, Sally, Doc etc. 

But Logan is ALWAYS McQueen or Buzz... nobody else is allowed to fulfill this role.

 

It is so fun watching his imagination run wild.  He plays with toys ALL day.  My coffee table is anything but a coffee table.  It is Andy's room and stage for all the Toy Story characters or a track for McQueen and Mater to race on. 

This make believe world has literally come to the "rescue" so many times.  At Logan's last appointment in June we were able to do an entire Echo NON-SEDATED.  This was huge for Logan.  In the past he had a melt down when they just tried to put stickers on him.  We practiced and worked with him leading up to the appointment, but it was the promise of this new Jesse toy with a pull string that talks that got him through the Echo.  (Being non-sedated was so important because we needed to get real numbers on his heart function to see if the last numbers were lower because of the sedation meds.  His function looked a little better this time so we are moving in the right direction.)

 He is even smiling as he lays there trying to hold still!

 He first saw this Jesse at a neighbor's house and he wouldn't let it out of his hands the entire time we were there.  Then later that day after he woke up from his nap he kept trying to go outside.  I finally figured out what he was trying to do and he was trying to go back to Sam's house to get her Jesse toy.  He wanted his own Jesse so bad.  So I told him maybe we could buy her for our next visit to the hospital.  I made the promise before I learned she is not sold at any local stores and was a whopping $45 online!

 

Getting through an echo non-sedated was totally worth the price!

 

Did I mention he still wants to wear his Halloween costume on a daily basis.  It is this thick Vinyl Buzz Suit that he will still insist on wearing on 100 degree days (or right now it is 9 am Sunday morning and he already has it on).  When I take it off him he cries and says, "No me want to be Logan G. now me still want to be Buzz." 

 

 The most important part of his costume is the buttons.  He pushes the buttons on the front and says the same things his toy would say.  "My name is Buzz Lightyear, I come in peace.  This is an Intergalactic Emergency."  And most important he goes around shooting us with his laser.

 I have learned to capitalize on this in a few ways.  Every Space Ranger needs oxygen to survive in outer space.  So when he fights me on his oxygen I tell him he can't be Buzz without it.

And the pulse ox charges his Lasers with the red light.  So when I need to check his oxygen levels and he won't hold still I tell him his lasers need charging.  (notice the not so awesome number (73% on 1 Liter of oxygen... gah)

 As I was up until almost midnight with him last night (he napped late and wasn't tired at bedtime).  We rocked and sang songs and read books and had snacks when the rest of the house was asleep.  I kept thinking I shouldn't be letting him get away with this, he is going to want to do this every night.  But it didn't stop me.  I just smiled and cherished the moment and sang a few more songs with him (how can you not when he is snuggling willingly and every so often will just look at me at give me a kiss).   How am I ever going to discipline him and not spoil him so much?  It is hard for me to not let fear of the future and worry about the "what ifs" consume me.  I kept looking at him last night and wondering how long do I get to keep him. 

I prayed that it will be a really, really long time.

I think about blogging all the time....

But some how there always seems to be something else that has to get done.  And then before you know it you are two months behind in updates (or in the case of my family blog years behind).  How can time seem to go so fast in some aspects of life and so slow in others.

This is a glimpse of my evening tonight. 

 

My cute Ashlyn took Logan outside, hooked him up to his portable tank all on her own, and followed him around.  Logan had his "Tow Mater" and "McQueen" fisted in both hands. 
Sometimes I want to complain that life isn't fair, but life is good. 
It is amazing what becomes "NORMAL"
This is our normal, and I have learned to be "okay" with it. 
We still don't have a lot of answers in regards to Logan's heart and the ever looming surgery that hangs over our head.  But right now this new medicine seems to be helping, and the oxygen helps a ton.  He is growing and happy so we are taking it one day at a time.  And as long as Tanner doesn't try to play with his McQueen we are O.K.

 

Magic and Memories

When you have a child with half a heart I think you see life through different eyes.  My reality is quite a bit different from what it was 3 years ago.  Making GOOD memories has become a top priority in our family.  Which is why Brad and I decided we needed to make another trip to Disneyland while the kids were still at the "magic" age.
My parents are really the ones who helped make it happen.  A dear friend of my mom's offered to let us stay in her house on Redondo Beach.  It was perfect; fun, relaxing, crazy, beautiful... most important though great memories were made.
Here are a few pictures of some of the highlights.

Logan got ahold of my dad's binoculars and wouldn't let them go.  He looked at everything from the ocean to little lady bugs with those.  

 Logan referred to the beach as HIS big sand box!

Tanner's first time being tall enough for Indiana Jones.  He loved it!

 Logan was star struck by Jesse... although still a little leery of how big she was!

The parade has become a favorite with the kids.  At one point during the parade Logan started backing away and then went and hid behind a stranger (as far as his oxygen tubing allowed him to go).  He had this terrified look on his face and we asked him what was wrong.  There was a giant crab in the parade that he was so sure it was coming to get him.  But other than the crab he loved the parade. 

Cars land was a favorite.

 tuckered out!

 This picture depicts my kids little personalities.  Ashlyn is such a protector and little mother, while Tanner is always teasing and turning anything into a gun... Logan is always in the middle.  Being the one protected and then following Tanner's lead any chance he gets to be a crazy boy.

 We had a chance to spend time with Brad's brother and his family.  This is his cute little girl Sarah with the kids.

 They loved pulling sea weed out of the ocean and making it part of their castles.  My kids never got tired of the beach.... well Logan got tired, but never bored! 

He had a nap on Grandma's lap every afternoon at the beach. 

We had an on going bag of tricks to play on Grandpa.  The silly string was a favorite, and the whoopee cushion a close second.

I know I say it over and over, but I am so lucky to have such a great family.  We made some great memories that I will never forget.
 

Sedated Echo

I know there are still a few of you that check in on my Logan every once in awhile.  An update is LONG over due!

He had a sedated echo the end of March.  We were hoping to find answers as to why he has been needing so much O2 and why his exercise tolerance has been so low.  The good news and the bad news is they didn't find much. 

We didn't go into the test hoping to find something wrong, but at the same time it would have been nice to find a problem that could be "fixed".  The only change from his echo last year was his cardiac output has decreased significantly.  At first his doctor just brushed that off to the medication they used to sedate him, but now with his oxygen needs increasing and not much changing he is wanting us to try a new medication that might help with that. 

We still aren't sure how we feel about introducing a med that "might" help.  So we will research it more, ask a million questions, and then decide what will be best for our little man (well as you can see he is not so little anymore)!

 

 

 

Can you get anymore Lightening McQueen than this! 

 He was all decked out and waited weeks for this bubble car.  I kept telling him he could have it when we went to the hospital.  He made sure as soon as we got there I made good on my promise.

 

He fell asleep pretty fast and I just loved his little slippers sticking out of the blanket.

He did really well, and it was a pretty uneventful hospital visit. 

They let us wait in the consult room so even waiting for the doctors and nurses didn't feel like we were in the hospital, and then when it was time for the scary stuff he had been medicated so he didn't remember any of it.

This week is CHD awareness week.  It has been a hard week for me.  Instead of going out and buying every heart themed item out there and wearing red every day, I have just wanted to ignore it.  Can you be mad at CHD's like you can be mad at a friend that has betrayed you?
My thoughts this week have been along the lines of how unfair and deceiving these heart defects can be.  I look at my perfect little Logan and get frustrated that he looks perfect from the outside, but you never know if things are working well on the inside.  Does that make sense?
I have been driving myself insane this week trying to figure his little heart out.  I check his sats several times a day... they are never the same.  Sometimes he is rocking out at an awesome 85% and other times he is hanging on at 74% or even better after climbing the stairs a whopping 53%.  We have also been noticing little "episodes" where he will hold his chest as he is trying to catch his breath from exertion and tells us it hurts.  I tell you it is driving me crazy because there are moments he acts perfectly fine, but then moments I wonder if we should be rushing him to the hospital.  You should see all the grey hair I am sporting now!
We have been in touch with his cardiologist and he will see him in a few days... But then I stress again that he will think I am a loony, over-reactive mom because Logan will probably be having a good day that day and everything will "appear" normal.   At least Brad has been there for a few of these episodes and if it freaks him out then I know I am not ALL crazy (just only kind of)!
His cardiologist wanted us to see if we could get him wearing oxygen more during the day, at first this felt impossible because Logan was afraid of the cannula (I am sure it reminds him of the hospital), but after leaving it in his toy box for a few days and putting it on his stuffed animals and brother, sister, and dad we finally convinced him to give it a try.  I think he has noticed he feels better with it on because there have been a few times he has asked us to put it on him. 

 

One night Brad just sat on the couch with him wearing a cannula the whole time.  What an awesome dad he has!

 And like I said, he look PERFECT most of the time!

 

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!