A new surgery date/Halloween Pics

Our lives just sped up a bit!  CHOP called and had an earlier surgery date come available.  We will now fly to Philadelphia Dec. 11th.  Pre-op will be the 12th, MRI the 13th, and surgery the 16th. 

5 weeks

YIKES

I have a lot to do!

 

Sooner is better, he is ready. 

It calms my heart a little to not have surgery on a holiday too.  I didn't doubt that we would receive great care regardless of the day, but this is better... for a lot of reasons.

We hope to make it home for Christmas, but if we don't that is okay (reality is we probably won't and we really are okay with that).  Who says Christmas can't come a few days late.

 

I don't want to tell Logan about the surgery and cause him any unnecessary anxiety, but I have been trying to drop hints here and there.  Yesterday as we were eating lunch I asked him if he wanted the doctor to fix his special heart so he didn't have to wear oxygen anymore.  He thought about if for a minute and said, "No it's okay mom, I wike my oxygen it helps feel me better." I guess that approach won't work!

So I said, well do you want the doctor to fix your special heart so you can run fast like Tanner?  To this he enthusiastically answered, "YES! I want to run really really fast like Tanner."  This from the little boy who tuckered out after trick-or-treating at 5 whole houses (and that was with a wagon).  Soon buddy, you will be able to run fast like Tanner.

 

 He had his final cardiology appointment here in Utah before we head out to CHOP.  It was a great appointment.  He was nervous, but a little bribery went a LONG way. He was most anxious about getting his picture taken (x-ray) and the stickers they put on him for the ECG.  I told him if he was brave and let them do it I would take him to Target to buy a new car.  This worked wonders.  He walked into the x-ray room and took his own shirt off and stood right where he needed too (unfortunately he knows this drill all too well).  I asked him to give me a thumbs up because I was so proud of him, he said, "no, I do it this way" and gave me a thumbs down!  He wasn't happy to be there, but by golly he wanted a new car so he was just going to get it done!
He was afraid the blood pressure cuff was going to break his arm, and he didn't like them pressing on his tummy.  But we made it through with the help of his good friend Spider Man, and he got a new car!

 

 The crew ready to go trick or treating!

 His heart buddy Enzo stopped by for trick-or-treating.  These boys are something special!

Halloween in style... wouldn't you love to ride in a wagon!

 

Surgery Date

I have sat down at least 10 times to write this post and I just end up crying.  If Brad was writing it, you would have dates and schedules with nothing else.  If that is all you want to know, skip down to paragraph 3.  Otherwise you get my LONG version.  

We have had a lot happen in the last couple of months.  To start, Logan's cardiologist left our local hospital in July so we have had to start over with a new doctor.  That has been hard.  It seems like every doctor has a different opinion and way of doing things.  I don't think one is right and the other wrong, but it puts a lot of pressure on Brad and I as Logan's parents to try to make the best decisions for HIM.  We knew Logan's next surgery was just around the corner, and his previous doctor knew that too.  I think we were all just trying so hard to let Logan's heart last as long as it possibly could before needing to go through this again.  When we met with his new doctor Brad and I both left the appointment with the same feeling that it was time, and we couldn't put surgery off any longer.  So Logan had his pre-Fontan cardiac cath in September.  Everything looked good.  They coiled off a small collateral vein, and said his pressures looked good and he was a candidate for the Fontan (his next surgery).  

We had planned on staying here in Utah for this surgery, but that is no longer the case.  We will be going back to CHOP (Children's Hospital of Philadelphia) on December 26th for Logan's Fontan (we will fly out the 26th, have pre-op on the 27th, a cardiac MRI and cath on the 30th and surgery the 31st).

I say that it is up to Brad and I to make hard decisions, but the reality is we don't make those decisions on our own.  NOT A SINGLE DAY goes by that we don't pray for guidance in raising our children and particularly for Logan's medical care.  We pray for guidance in finding and talking to the right doctors and in every decision we make for him.  Things have fallen into place and it has been confirmed time and time again that having the same surgeon complete this surgery is the best decision for Logan.   I wish this wasn't something we even had to think about, but it is our reality... it is HIS reality.

It has been a process for me in getting to the "okay" point with everything.  The timing is not ideal.  Who wants to leave the day after Christmas, heck who wants to do this at all.  But it is right, and I would figure out a way to fly to the moon for my child if that is what he needed.  I have been trying to "plan" for everything... so much so that I think I might give myself an ulcer!  It seems like when I don't have control of things like the timing (or the fact that he even has to have this surgery) I completely obsess over the little things that I do have control over.  The other day I was stressing out about what size shampoo bottles to pack because last time we ran out 3 times (I took the travel size, when those ran out I bought a little bigger size thinking there was no way we would be there that long, and ended up having to buy a 3rd set).  SEE!  Completely rational to stress about right?  And how in the world am I going to take all 80 of Logan's cars with us without going over the weight limit on our bags!  I might need to paint my house or find some major project to keep myself from going insane the next 2 months!

It will all work out, right?

So now addressing the question so many are asking, "Why fly clear across the country when we have  a great hospital here locally."  Here you go.... Not only did Logan's cardiologist leave Primary Children's, but the surgeon that performed his first surgery as an infant also left Primary Children's.  I NEED to feel like someone has a vested interest in my son's care.  His poor little chest has been opened up 3 times already, I would like the 4th time to be by someone who knows HIM, who has been in there and knows what is going on.  Since we attempted the full repair to give him a 4 chamber heart and that didn't work (his little heart just couldn't handle it),  his Glenn was not a cut and dry Glenn.  His new doctor, the medical advisor with our insurance provider, and the doctors at CHOP all feel like Dr. Spray (his surgeon at CHOP) needs to be the one to complete this surgery.  Dr. Spray is one of the top surgeons in the world.  That is why we go when they say they have a spot for us, even if the "date" is not ideal.

But really, the date is working out to be a blessing.  Flights are cheaper the day after Christmas, the Ronald McDonald House might not be as busy with the holiday so our chances of getting a room there is more likely.  January is Brad's slow time at work so it will be easier for him to manage his work remotely.  My parents don't have any trips planned the month of January so Ashlyn and Tanner don't have to be passed from house to house.  They are excited to have Grandma and Grandpa in charge again.  They have already started making plans of what tricks to play on Grandpa and what they are going to talk Grandma into getting for them.  I don't worry for a minute that they won't be taken care of.  I KNOW I will miss them like crazy, and I KNOW Logan will miss them like crazy too, but we are hoping this visit will be short and sweet and we will be home before we even have time to miss each other. 

Thank you to those who love and support us.  Thank you to those who deal with my random tears and let me just talk or in some cases not talk.  I know we will make it through this, and I know we don't have to do it alone.

He is ready to run and chase the birds and forget about if his oxygen hose is long enough.  

I love this little boy!

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!