Today

Today was surprisingly a relaxing low key day.  Those who know me well are probably in shock.  Normally on the day before surgery I would be a nervous wreck.  I do feel a sense of peace and calm today so thank you everyone for your prayers.  I know those prayers are what will get us through the next couple of days.
Logan dictated our entire day (how that is different from any other day, I am not sure)!  When he wanted to eat we ate, when he wanted to play we played.  We went for a walk before it got too cold and he watched a tractor tear down a building, he thought that was really cool.  He wanted pretzels for lunch so we walked to a pretzel shop.

I haven't told him about tomorrow.  I will tell him on the way to the hospital.  I am amazed at how much he picks up on.  When we met Dr. Rome on Friday he asked him right off if he was the doctor that was going to fix his heart.  Dr. Rome laughed and said, "No, that would be my friend Dr. Spray."  And then Logan didn't pay attention to him after that.  So he knows he is getting his heart fixed, but not sure when. 

My Aunt Jeri wrote this poem and it came with a way to generous gift from my family.  But this is our prayer that as we knit our hearts together in prayer that Heavenly Father will help the heart of my little boy.

He is blowing kisses goodnight.

 Goodnight

I will update tomorrow as time permits.  Again thank you for your prayers and love.

MRI

Miraculously we made it to hospital by 5:30 am this morning.  I hope I don't get a quiz on everything I was told today because I don't remember being this tired in a long time.  Time change coupled with anxiety... sleep just wasn't happening for me last night. 

 Brad and Logan on the other hand slept until the last possible minute.  Logan woke up asking for a drink so I was nervous it would be a hard morning, but with a little distraction (a new toy to take with us) and a binky we made it through.  He immediately cries when we start leaving telling us he doesn't want to go to the doctors anymore.

Breaks my heart. 

 

Our morning documented with pictures...

 Thank you to whomever gave him this Tow Mater.  It was the perfect toy for today.  The toy talks every time it moves so he was saying funny things to us all morning as the stroller bumped along.

 Then they just happened to have a Tow Mater Christmas pillow case for him today. 

 

In the next few pictures you will see the progression of a drug called versed.

   Here is he all nervous on my lap.

 Then he got a little crazy and loopy.

 And eventually relaxed enough to forget we were at a hospital and enjoy a good movie.

And then to where he didn't even need me to hold him.  He was giving the anesthesiologist high fives and everything.  He was cracking us up.  It is never easy to kiss this little guy goodbye.

 

The plan was to start with an MRI and then if needed they would send him directly into the cath lab with the same anesthesia team.  We waited a good 2 hours for the MRI to be completed and the images read.  Once Dr. Rome got the data from the MRI he decided it was not beneficial at this time to do a cath.  This was good news and not good news at the same time.  Obviously we weren't excited to send him into the cath lab, but a theory on his poor exercise capacity was that maybe he had arterial collaterals that could be coiled off in the cath lab. That theory is ruled out.

 

He was a little upset waking up from the anesthesia, but once he got his "stuff" and mom he settled right down. 

We were prepped and given instructions for surgery day on Monday.  It is hard to believe it is here.  After so much waiting and prepping we are really here and it is happening.

When Brad and I had to make the decision on hospitals the surgeon was definitely the main reason we came back to CHOP, but the facility was a huge part of the decision too.  The after care of surgery is a BIG deal.  I saw a shirt a nurse was wearing today that had a big target on the back and it said something about meeting a goal.  I asked her about it.  She said that is was to celebrate they have gone almost 2 years on the cardiac floor with NO hospital infections (things like staph infections and things from central lines, IV's etc.).

 THAT IS HUGE.

  Infection is a huge fear of mine and something I have watched way too many heart kids battle that shouldn't have to worry about things like that.  I am happy we are here.  We prep Logan for 3 days prior to surgery with special wipes for his body, ointment for his nose, and a mouth wash to try to have his body as clean and germ free as possible for surgery.  So we have the weekend to relax and hopefully not go crazy before his big day Monday.

Pre-op 12-12

Yesterday was a crazy whirlwind kind of day.  Luckily Logan slept well at the hotel.  We were in an unfamiliar part of town so by the time we tracked down somewhere for breakfast we were hurrying to the hospital for our pre-op appointment.  Brad has been awesome at getting us everywhere we need to go in a crazy busy city.  I would be a basket case if I had to drive here.  When we left for the hospital the PRMH (Philly Ronald McDonald House) still didn't have a room for us so we figured we would be staying in the hotel another night so we hadn't packed up our stuff.  As we got to the hospital the social worker from PRMH called and said they just had a room open up that would work for us. YEAH!  The stress then was not being able to check out of the hotel by check-out time.  Thankfully the hotel was so nice and let us leave our stuff in our room until we were done at the hospital which ended up being almost 5pm.  They were very kind not to charge us another night. 

Pre-op was long..... but good.

As we sat in the clinic waiting room I felt extremely overwhelmed.  I was feeling like we were just way too far from home.  Then we walked back with the nurse and encountered our first familiar face.  One of our favorite nurses that took care of Logan after his last surgery is now a NP here.  It was so great to see her, and she loved seeing Logan again. 

Logan did great.  We told them we needed to hold off on labs until we were walking out the door.  Smart move. 

Bribery works wonders with this kid.  The promise of a new toy is like a million dollars.  So he puts on his brave face and gets through whatever he needs to just to get that new toy.

 

 

Logan still continues to baffle doctors and nurses.  Logan's anatomy is unique.  Even for being a single ventricle, he is just one of a kind!  His saturations have been great here at sea level when he is at rest.  First check in clinic he was satting at 88 and the nurse kind of looked at us funny like "Why do you have him on oxygen" (88 is pretty good for a post Glenn heart kid).  But then she saw him walk the short distance for his x-ray and almost pass out from the effort.  She measured his saturations again and he was at 52%.  His drastic drop is still a big concern and question for anyone involved in his care. 

We met with Dr. Rome and talked through different scenarios and asked enough questions to drive him crazy!  Then finished with a traumatizing blood draw that went better than most (thanks to new cars) and with instructions to be back at 5:30 am the next morning.  YIKES.... that is early especially when you consider we are still functioning on Utah time.

We rushed back to the hotel to pack up and get to the PRMH before the volunteers left for the night.  We had a very warm welcome and are so grateful for this incredible service they offer.  We were able to have a warm meal cooked by volunteers and they welcomed Logan with a new toy (he was beyond thrilled and LOVES his new hotel as he calls it).

We are blessed, and Logan's spirits were lifted a little when he saw there were toys and fun things to do at our new hotel.

Travel Pictures

Logan got to check out the cockpit as we boarded the plane in Salt Lake.  Brad went ahead of us and sanitized our seats and then Logan and I waited until the end to board.  Everyone was really nice and of coarse Logan didn't mind the extra attention.

He was a great little traveler.  The people around us didn't have to listen to any crying, but they did hear a lot of car noises, Buzz Lightyear, and Woody voices!  It is nice to have the stress of traveling over with.  I had forgotten just how far away this place is from home. 

We made it

I just wanted to let everyone to know we made it to Philadelphia.  It has been a long day, but we are safe and sound and Logan just fell asleep for the night (we hope he sleeps all night).  We left our home at 6:00am and didn't settle in here until 10:00 local time. We had a layover in Minnesota that was delayed 2 hours so that put us behind.  At least it was a nice, clean airport.
Logan did great, and was excited to go on the airplane.  We thought he was excited for the plane itself, but all he cared about was getting new toys and playing with them on the plane.  I have never met a kid that loves toys as much as Logan.  He plays and plays and plays with them and has such a great imagination.  (When I get to a computer I will post pictures).
As soon as we landed and got the rental car Logan asked to go back home.  We told him it would be lots of days before we got to go home.  He said that was not a good plan and that he hates doctors and doesn't want to see any, he just wants to go home.  Oh boy....
The Ronald McDonald house didn't have any rooms available so we found a hotel for tonight.  We will check back with them tomorrow.
Tomorrow we meet with his cardiologist and will solidify our plan.  More to come...

Oblivious

Oblivious is what I wish I could be.  Oblivious to the fact that time is moving at mock speed, oblivious to the reality that we fly out in 2 1/2 weeks, oblivious to the stress of planning and preparing, oblivious to the heartache and anxiety in my older kids. 

Logan is oblivious...

and I wouldn't want it any other way. 

This sweet kid of ours wakes up singing to himself every morning.  He sings while he plays, he smiles all the time.  He randomly comes up to me and says, "I wuv you Mom."  He can't get his picture taken if I am by him without putting his arm around my neck. (When Brad told him to smile he hurry and put his arm around me).

 

 He is PURE joy. 

He is PURE love. 

 I feel the burden so heavy knowing what is looming in his future.  I don't want the trauma of the hospital to take away his love and joy for life.  I want him to continue singing through life with a smile. 

I planted the idea in his head that the doctor could fix his heart so he didn't have to wear his oxygen anymore, and now he will ask me all the time when the doctor will fix his heart so he doesn't have to wear oxygen.  I pray this surgery does what it is suppose to, and doesn't make a liar out of me.  I really hope that he will be able to run fast like Tanner and play to his hearts content.

 

Some days I find myself staring at the wall for longer amounts of time than I would like to admit.  I get that completely overwhelmed feeling that I just can't do anything.  Brad has picked up my slack.  He has pretty much conquered Christmas all on his own (thanks to Amazon.com).  It is really hard planning for Christmas not knowing where we will be. 

 

My sweet Ashlyn is having a hard time with us leaving.  She came to me the other day and said, "Mom, have you ever said something and then wish you didn't say it."  I said, "All the time!"  She had just come home from Activity Days so I assumed she said something that hurt one of her friends feelings and she was feeling bad about it.  I asked her what she regretted saying.  She said, "Well you know how you talked to me about you going to Philadelphia and you asked me if it was okay with me?  I know I said yes Mom, but I am not sure I am okay with it anymore."  Talk about a tug at the heart strings.  I asked her why she didn't think she was okay with it anymore and she said, "Well you know how hard of a time I have saying goodbye to you when you go teach on Monday nights, well I just don't think I will be able to say Goodbye to you."  My heart broke in pieces.  I know we need to do this for Logan, but I am leaving pieces of my heart here at home with my other kids.

 

Tanner is not one to talk or voice his feelings very much, but I know our "trip" is forefront in his mind.  This is the picture he came home from school with the other day.  When I asked him what the assignment was he said they just got to draw a picture of whatever they wanted.

 

Is that not the cutest kid spelling you have ever seen? 

(he still gets his b's and d's mixed up, the last page says, "To give my broth(er) a surgery."

 

I had this grand plan to paint my house to keep myself from going insane (because I won't take Logan anywhere right now for fear of illness so we are home A LOT).  I finally came to my senses and decided that was too big of a task to take on right now.  So instead I have been making blankets.  I took each kid with me to the fabric store and let them pick out exactly what they wanted.  They helped me make their blankets and designed them all by themselves.  I told them when they missed me when we are away they can wrap up in their blankets.  (I know completely cheesy) But they have LOVED them.  And I had fun making them.  I even made one for myself. 

 

 

So let the count down begin.... 2 1/2 weeks.  Let's hope we stay sane and healthy!

 

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!