Ups and Downs

Today has been full those- ups and downs.  Logan had a pretty good night.  He ate well and was comfortable.  So they took him off his sedation medication and most of the strong pain meds.  He kicked both IV's out of his feet so the IV team had to come and put in a new IV.  They tried to save one in his foot and that ticked him off.  I'm sure it hurt like crazy.  They ended up putting a new one in his wrist.  After this we had a really hard time calming him down.  I would just get him settled down and then they would have to do something else.  The surgeon came in and removed the RA line and the drainage tube, and then they removed his ART line so we were able to hold him.  I wish this would have been more exciting and comforting to him, but I think it hurt him worse.  He seemed more comfortable in his bed than being held, and had no interest in nursing (anyone who knows Logan knows that is completely out of character for him)!  He didn't eat well all morning and was having a lot of belly pain because he hadn't peed or pooped yet.  So we spent the better part of the day trying to get him to do those things. 
We were moved out of the CICU (cardiac intensive care unit) to the step down CCU (cardiac care unit).  He did not do well with the transition, but then this nurse was nice enough to give him the good stuff (oxycodine) that worked its magic and when it kicked in he drank a bottle and pooped... success! 
Other than pain, he seems to be doing well.  The pressure in his Right Atrium looks good, so the chances of him needed the Glenn are really low. Hallelujah!

Post-Surgery Update

We had been told Dr. Spray was a fast surgeon, but we weren't prepared for just how fast he was.  Logan's surgery was only 2 hours start to finish.  AMAZING!  The less time he spends on bypass the easier the recovery.

Everything went well, and the doctors are pleased with how he is doing and looking.  Brad and I were shocked and thrilled at how good he looked when we saw him.  He looks 1000x better than after his last surgery.  I guess that is why they like to get the babies as big as possible, they tolerate things a lot better and their bodies are stronger.  He was already off the ventilator when we came back to see him.

Dr. Spray felt like the surgery went well.  The VSD was repaired without any complications.  He did say though that his tricuspid valve is more deformed than he originally thought, and half the size as it should be.  He wanted to give his right heart a fighting chance to function though, and so do we.  That is the whole reason we are out here.  So they will closely monitor his right heart to make sure it can handle these new pressures and make sure the valve can function properly.  If anyone can beat the odds, it is Logan.  It is hard because they honestly haven't seen a lot of cases like Logan.  HRHS is rare in the first place (less common than HLHS) and then Logan's anatomy is not typical HRHS.  I am grateful they are letting him try to beat the odds.  So we aren't out of the woods yet.  There is a small chance they will have to go back in and do the Glenn, but we are hoping they won't.  Either way, we will NEVER second guess our decision in giving him the chance to function on a 2 ventricle heart.  Even if it isn't your typical 2 ventricle heart.

I think he looks AMAZING!

He has a daddy that LOVES him to pieces.  I am so grateful we are here together, I love Brad so much.

 He will probably be off oxygen in the next day or so- when it doesn't hurt so much to breath deeply.

He has an RA Line (a line going directly into his right atrium) to measure the pressure.  We won't be able to hold him until this line is out seeing as how is goes directly into his heart.  Then an Arterial line in his arm, and IV's in his feet that they can give him his pain meds through.  They are keeping him pretty sedated today, when the pain meds wear off he acts really uncomfortable so we give him more pain meds.  It is sad to hear him cry because his voice is still raspy from the ventilator.

 He got to drink a bottle of pedialyte, and he loved that!  He will have breast milk before the end of the day.  (all the extra cords are from an EKG)

We were lucky to get a private room in the CICU so I get to sleep here with him tonight.  And it is nice and quiet in here.  I can't wait to hold my little guy again (when I get to hold him I won't be on the computer that is for sure)!

Pre-Surgery Pictures

We have had a rough couple of nights sleeping at the PRMH (Ronald McD House) because Logan was not a fan of the pack and play.  I don't blame him- after all he has only known his crib.  We have never taken him anywhere.  So the last couple of nights I have had NO sleep.  I've paced the hallways with him, moved him from the pack and play to the car seat... rocked him in the car seat- you get the picture.  I say all this because ironically enough he slept last night.  I was a nervous wreck though- so of coarse I didn't sleep much.  We had to be up at 4 am to give him his last feeding and get to the hospital- so I took his picture because he was actually sleeping FINALLY and I had to wake him up!

I took a million pictures... being this far away I have to give Grandma and Grandpa and his sister and brother every little "moment."

Here he is getting ready for surgery.  He loved all the cords and wires.  He kept trying to put them in his mouth... surprise, surprise.

He really wanted the nurses stethoscope.

AHH!  Success he got the stethoscope.  Can you see the grin under the Binky?

Everyone has been so surprised at what a big boy he is.  The nurse had to get a bigger hospital shirt for him because the first one was too small.  Look at those beefy thighs!

The oxygen sensor on his toe glowed red, he really wanted it off.  He was successful at taking most things off.

I held him until the last possible moment.  I got emotional the moment they started hooking wires up to him.  I hope and pray this is the last time he has to go through this.

Surgery Day

I hate the fact that Logan fell asleep in my arms and is going to wake up with tubes, wires, and pain.  He is in surgery as I sit here and wonder what to do. 
We met Dr. Spray today.  He was extremely nice, and VERY optimistic.  The VSD repair is complicated, but I feel comfortable and at peace.  I feel like he really knows what he is doing.  I keep saying to Brad, "Are we crazy for coming all this way."  After meeting with Dr. Spray I KNOW we are not crazy.  If we would have gone ahead with surgery back in November the chance of a Glenn was 100%.  Dr. Spray said this morning he thought there was a 10% chance of him needing the Glenn.  Brad turned to me and said, "That is why we came all this way."  So we wait for our hourly updates from the nurses.  They just came in and let us know they are setting him up on bypass (the heart and lung machine).  We will keep praying for a miracle.  Logan's entire 7 months on this earth have been filled with "miracles" in my book.  The fact that he went home from the hospital without any of us knowing his little heart was broken.  His first surgery went amazingly well.  The fact that he is such a healthy boy growing so well.  And most of all that his right heart is growing.  A friend of mine, another heart mom, emailed me before we left and she said, "I am grateful for my sons heart.  If he had been born with the miracle of a complete heart, that would have only been ONE miracle.  Instead I have been witness to MANY miracles."  I feel the same way.
Pray for my baby.  Because although I do believe in miracles I know it is my Heavenly Father that grants those miracles.  I left my baby in the arms of an incredible surgeon, but ultimately he is in the hands of a loving Heavely Father.

Ronald McDonald House

I promised Ashlyn some pictures of the Ronald McDonald House, she wants to know everything about where we are staying.  So I took the camera around today and took a bunch of pictures.

They have cute little playrooms for toddlers and for older kids.  Logan has captured the heart of everyone here- he has a smile for everyone!

This is the "older" side of the house that we are staying in. The history of the house is interesting.  It was originally the mansion of a wealthy family, then later turned into a funeral home (kinda spooky), and then became the very first Ronald McDonald Home.

This is the "newer" part of the house that was built.  It is more hotel style rooms.

Connecting the old house with the new.

They offer so much here.  Every night a different group of volunteers come to cook dinner.  Tonight we had an all girls basketball team that came in and made tacos.  Last night the Key Club from a local High School came and made dinner.  Logan had all the girls oohing and ahhhing over him!   

Brad thinks this elevator looks like it was made for coffins... he makes a comment every time we have to ride in it!

The beautiful stairways in the entry way.

The "huge" storm (a whole 4 inches) that closed the airport and closed the city down still lingers on the streets.  No wonder it is a state of disaster... they DON'T plow!  I about had a heart attack as we were landing and I saw snow all over the runway... they don't even plow at the airport.  Our flight was the first flight out of SLC to Philadelphia that wasn't cancelled because of the storm.  We didn't have any problems until we landed and they couldn't get the Jetway to the plane to get us off because it got stuck in the snow!  

We ventured out on a very little walk today.  It is cold!  The house is is a pretty good area.  But one block in one direction is ghetto ville and the other direction is a nice college campus.  The GPS was so kind to route us through "ghetto ville" on our way here from the airport (it was dark and we were terrified we were going to get stuck in the snow in our little rental car).  We checked to make sure the doors were locked and only ran a few red lights!  But we made it... we haven't ventured out in the dark again though.

Play before Pain

A few sweet pictures of our boy...

His first time on a plane- I didn't realize I dressed him in his airplane shirt until we were at the airport!  He did so well on the flight.  Didn't cry a single time.

We flew in Monday night and had all day Tuesday with no doctors appointments.  Tuesday morning was rough.  He didn't sleep much.  He had a complete blow out of his diaper and right after we changed him he threw up all over me and his blanket.  I was FREAKING out.  I called the hospital crying so nervous that he was going to be sick and couldn't have his surgery.  After a nap he woke up 100% better- he was just tired and messed up from the travel. 

We met Brad's sister and her family at a cute Children's Museum that afternoon.  Logan had fun looking at all the fun things- and smiling for the camera.  I kept him in his car seat most of the time to keep him away from the germs, but let him venture out a few times for a quick picture.

After a complete sanitation wipe down we let him rock out in the exersaucer at the Ronald McDonald House.

We have arrived

We have made it to Philadelphia and are getting settled in the Ronald McDonald House.  We were lucky that our flight was not cancelled.  We were right behind the storm (better than in the middle of it).  Logan did great on the flight.  But traveling is exhausting!  The roads here are crazy, for some reason they don't plow.  It is our 10 year Anniversary today... we had an amazing dinner of casseroles- compliments of Ronald McDonald volunteers!
We have already met another family staying in the house who's little baby had open heart surgery on Thursday.  They couldn't say enough good things about CHOP and the care they have gotten there.  We have been planning this forever, it is weird to finally be here.  I am emotional and overwhelmed, but so grateful.

Check-up

We took Logan in on Monday for his last check-up here in Utah with the Cardiologist before we fly out to Philly.  His regular doc, Dr. Mack, is out of the country so we saw Dr. P.  I have liked every doctor we have seen at Primary's.  I love how they work as a team, and although we have never seen Dr. P he knew Logan's case and has met on it with their group several times. 
The appointment went really well.  They are thrilled at how well Logan is growing.  The little chunk is almost 18 lbs.  He is holding steady in the 30th percentile.  I love watching new doctors see Logan for the first time.  They know him by his records and reports so with his diagnosis they expect to see a struggling child, and then our little Logan blows them out of the water with his pink skin and great growth.  (I think I can take the credit for this one since the little stinker will only nurse.  It is a three ring circus to get him to take a bottle and when he does take one he will only drink 3 oz.  He has it figured out that if mom isn't home 3 oz. will get him by until I get home.)

We went over the results of the 3-D echo he had a few weeks ago.  It was confirmed to me that prayers are answered and there is a God.  Miracles can happen, and faith is real.  When Logan was in the hospital at 2 weeks old for his first surgery here is what I wrote in an email to friends and family.  "They are hoping this Pulmonary Artery Band they put on will let him grow to at least 6 months (the cardiologist says 5-7 months and the surgeon says 8-14 months)!  But no one has any definite answers for us on if they are going to be able to repair his heart to be a fully functioning 2 ventricle heart or if they will only be able to make it function as a 1 ventricle heart.  I pray every day for a miracle- first that some how his heart will just heal on its own.  That the right ventricle will stretch and the hole close on its own, and if I can't have that wish then I pray that there is a surgeon out there that is confident enough that he can repair his heart to be fully functional.  I know it will be God's will what happens, but I am making sure he knows my desire as this sweet boy's mom." 
I later asked the doctor how likely it was that his right ventricle could grow.  The doctor pretty much said, that never happens and to not get my hopes up.  Well after getting the results back from his 3-D echo the doctor said his right ventricle has GROWN!  They said it looked very promising to be able to do a full 2 ventricle repair.  Gasp, sigh, sob, scream.... I have waited a few days to post this because you always fear maybe you didn't hear the doctor right.  He did preface everything with, "We don't know anything FOR SURE until he is opened up and the surgeon is looking at his actual heart."  So it is not for sure that they will be able to do a 2 ventricle repair, but the chances are greater than they have ever been. 
Prayers are answered.  Logan has made it to a strong healthy 7 months old before needing surgery.  I truly feel like we were led to the surgeon, Dr. Spray, at CHOP to do this repair for Logan.  All the doctors at Primary's are supportive in our decision to travel.  Even though Logan's case is looking so optimistic the VSD repair will still be open heart and extremely complicated because the tricuspid valve has attachments where they need to patch the hole.  They will also have to make decisions while he is open, if his ventricle is indeed large enough to handle the blood volume once the hole is closed, but the biggest wild card will be if his small tricuspid valve can handle the pressure.  They will decide once they see his heart function whether or not they need to go ahead with the Glenn.
I still leave it in the hands of God, and know it is His will that will be done.  But I have so much hope for my little boy.

Surgery Date Change

We are still flying out on the 27th, but they have bumped his surgery to be on the 30th instead of the 29th (pre-op work will be done on the 29th).  This gives us a day to get the lay of the land and spend the day in a COLD, snowy city..YIPEE!  Brad's sister and her family are coming over from Baltimore to spend the day with us though so that should be fun.
Now I just need to start packing so we can enjoy Christmas.

Echo Results and Surgery Date

My baby is my HERO!  This kid just keeps amazing us.  We were up at PCMC all day Thursday for a sedated 3-D echo.  I wish we didn't have to put him through so much, but he takes it all like a champ.  He still loves me and wants to snuggle with me after I have to starve him for hours, hold him down while people poke him with needles, and then waking up not knowing where he is or what happened.  The nurses warned us he would wake up grumpy, but he woke up with a smile and flirted with the nurses.  The doctors thought his tricuspid valve looked "hopeful" and like they would be able to repair his VSD.
CHOP also called while we were at the hospital on Thursday and scheduled Logan's surgery for the 29th of THIS month.  Holy Crap.... that is soon.  At first we asked if there was any way they could put us off until January, but then the more we thought about it, we realized this worked better for us.  We will be flying out on the 27th- our 10 year Anniversary (we always planned on taking a big trip for our 10 year- I think this qualifies as a big trip).  We will do all his pre-op testing on the 28th and then surgery on the 29th.  With it being the holidays this also makes it easier for those watching Ashlyn and Tanner because they won't have school etc.  We have such an amazing support group with our families and friends- I think Ashlyn and Tanner are going to have a non-stop party while we are away!

Update

After 2 1/2 months of waiting for test results, doctors opinions, second opinions etc. we are finally making some progress.  We are planning on taking Logan to CHOP (Children's Hospital of Philadelphia) the first week of January for his next surgery.
This decision has not come easy.  Brad and I have researched everything we know how to research.  We have talked to ANY doctor that will talk to us!  We have prayed and been to the Temple numerous times and what it comes down to is this is what feels right. 
So why not Utah is what everyone is wondering right?  Let me try to explain... The surgery options presented to us by the surgeons here in Utah:  The Glenn procedure NOW followed by the Fontan when Logan is 2 or 3.  This would shut his right heart down completely so he would only be functioning on 1/2 his heart.  This option would then require a heart transplant down the road.  Not to mention a very limited lifestyle activity wise along with risks of Kidney and Liver problems.
From the very beginning we have been optimistic and hopeful that Logan would be able to at least avoid the Fontan because his right ventricle, although small, is still adequate to function some.  So when we got the surgery plan back from the doctors in Utah we were devastated to say the least.  My heart sunk, and I knew if this really was the road we needed to take we would need to hear another surgeon say there was no hope for his right heart.  We sent his case out to 2 of the top surgeons in the country at CHOP and Stanford hoping they may have more experience with anatomy like Logan’s, and also consulted with another cardiologist at John Hopkins.  I needed to hear at least 2 doctors agree on the same thing because we were getting different opinions from the doctors here. 
We heard back from CHOP within a week, and as Brad relayed to me what the doctors there had suggested for Logan's care I wanted to jump for joy.  They felt like they could have him functioning on his right heart.  They would repair his VSD (the hole between his ventricles), and if the tricuspid valve is functioning enough they could possibly do a 2 ventricle repair, but likely not less than a 1 1/2 ventricle repair.  This is what we have hoped and prayed for.  We tried not to get our hopes too high though because again we needed to hear at least 2 doctors agree on the same thing.  Stanford took their time getting back to us (an entire month after they reviewed his case), but they came back with the same surgical plan as CHOP.  So we have 2 surgeons agreeing on the same thing... GLORIOUS! 
Stanford makes more sense logistically speaking, but CHOP feels right.  So we are preparing to travel across the U.S. to give my baby's heart the best chance we can. 
There is still a lot that can happen in a month.  We have a sedated 3-D Echo scheduled for Thursday that will give the doctors a better look at how his tricuspid valve is functioning and if it will be problematic with the CHOP/Stanford surgical plan.  We also need some other things to fall into place, but for now this is the plan.  It feels good just to have a plan!
Reality sinks in a little more every day.  I panic when I think of leaving Ashlyn and Tanner for anywhere from 2 weeks to a month…or more.  I know it would be SO much easier to stay in Utah and be able to come home and be close to family.  But I also know this is the right thing for Logan. 
THANK YOU everyone for your prayers and concern for our family.  PLEASE don't stop praying.  I KNOW it helps.  I will keep you posted on our plans as they become more definite.