Pink Eye??? And back to CCU

Logan is prone to "goopy" eyes.  They come and go, and sometimes we think it is pink eye other times we think it is just a clogged tear duct.  He started getting goopy eyes the other night, and his nurse thought it looked like pink eye so we got put on Contact Precaution.  This means that anyone entering our room has to put on a new gown and gloves.  Our poor nurse probably goes through 50 gowns a day.  If she walks out into the hall to even grab a piece of paper she has to put on a new gown so they don't spread this to anyone else.  After the first day Brad and I could tell them it wasn't pink eye.  It only gooped when he cried, and his eyes didn't turn red, but they have to get it cultured before they take us off precaution.  At first we thought this was lame, but then we came to realize this is GREAT!  It means until we are off precaution we are in a private room... so we'll take it.

 Look at Logan's face.  I love it- he was trying to ignore the doctor!

 They decided today this little guy is doing well enough to move out of intensive care and back to the CCU.  We were really nervous to move again, but after 3 doctors coming in and reasurring us they were keeping a really close eye on him we moved.  Before they moved us they took him off his oxygen and monitered him for awhile.  He did great.

 Back to CCU in our new room, and it is so much easier to hold him.  No more oxygen and the IV isn't going 24/7.  That is less cords to have to work around- it makes for much easier snuggles.

A New Day (and lots of pictures)

Today was indeed a new day.  It was a good day.  Logan likes being back in the CICU.  He perked right up when we got here, and has been going up hill since.  Our last 3 nurses have been HEAVEN sent.  I slept for the first time in days last night.  I was able to get a sleep room off the CICU- that way I was able to have some quiet, but still be only steps away from Logan if he needed me.  His nurse took such great care of him.  And I don't feel like a zombie today.
Logan sat up in his bed today and played with toys, smiled a few times, blew raspberries and drooled.  He watched Baby Einstein and Curious George.  We read him lots of books, snuggled as much as possible, talked to Ashlyn and Tanner via Skype, but his favorite thing was he didn't have to get poked with any needles today.
They did an x-ray this morning and the fluid on his lungs has increased- boo!  They are combating that with diuretics.  He isn't peeing on his own, just when he get the drugs.  But he will start- I know he will.  His liver has lifted a little which is a good thing.  They did an echo, and things don't look awesome.  When they patched the VSD it changed the function of the tricuspid valve.  So even though the surgeon didn't touch the valve in surgery because the hole was so close to the valve it changed the way the valve was functioning which is causing the backing up of blood.  The small valve is just not able to handle the increase in blood volume.  We talked to his cardiologist here today and talked to Dr. Spray his surgeon.  The plan is to get the fluid off his lungs so they can do a cardiac cath and measure the pressures more accurately in his heart.  Dr. Spray was so surprised at the turn of events.  His pressures were so low during and after surgery that he thought Logan would be home free.  It will probably take a few days to get the fluid off his lungs so we will wait and hope and pray that the doctors and we as his parents will know the best thing for him.
Okay back to some lighter stuff.  We ventured out of the hospital today.  It was nice to get some fresh air... even if it was full of exhaust and pollution from a busy city.  I asked the nurse today if I could put Logan in "normal" clothes instead of hospital gowns.  She said I could if they were short sleeved and stretchy.  I packed winter clothes for Logan so all his onsies except one were long sleeved.  So when Logan had had a good dose of pain meds, and went down for nap we ventured out to Target to buy him some clothes.  It is so funny because we have a running joke here about the attitudes of the people working the customer service.  They are so grumpy.  The cashiers in the cafeteria have never cracked a smile, said hello, or even told us our total.  They just wait for you to hand them your money.  The McDonalds here is famous for their lack of customer service.  And the list goes on.... except today.  We had lunch at Pei Wei while we were out on our Target run and the lady taking our order was so friendly.  As soon as we sat down Brad and I said at the same time, "Wow someone was actually nice!" 
I have pictures here from the last three days.  You will see Logan looking pretty good, then not so good, then good again.  Today he looks awesome. 

This is Friday, the day after surgery.  Our first CICU stay.   This was the first time we got to hold him.  I think he still wanted to be in bed.  We were excited so excited to hold him though.

 Later in the day on Friday after we were stepped down to the CCU. 

Boy party!

Brad's sister Erin and her family came for a visit New Year's Day (they live in Baltimore).  They brought Logan balloons that he LOVES!  And brought Brad and I our New Year's scones.  It was nice to get some visitors... they will probably be our first and only visitors!

  I ragged on the "unfriendliness" of those working customer service, but that is definitely not our only impression of the people we have been in contact with out here.  We have met some of the kindest people.  This little bear next to Logan was given to us by a complete stranger. Brad was waiting in line for lunch and struck up a conversation with the guy behind him.  They talked for awhile and then headed off in their different directions.  Later that night the lady working the desk of the CICU stopped us and said, "are you the couple from Utah?"  This guy had remembered what floor we were on and had gone to the gift shop to buy this bear for a little boy he had never met, and wanted to wish him the best.  It made me cry.  What a kind stranger.  Here is Logan in his few good hours without oxygen on Saturday.

Oh man, back on the oxygen.  He hates it because it makes it hard to suck on his binky.  He is constantly rubbing it out of his nose.  Do you love our little Prince in his soft cushy blankets!

A bath to clean off all the goop- he was NOT a fan.  I wasn't a fan of the nurse that did the bath either.  Some of the nurses have such a caring nature, some just do everything by the book without compassion.  I wasn't sad for her to go home!

"Maybe if I cover my face everyone will go away, and constant beeping with stop!"  This is how we get him to sleep here.  I don't let him do this at home because I worry he will suffocate.  But here he is hooked up to so many monitors we would know if he was suffocating before he could!

Once Brad and I started realizing how much he was struggling Saturday night they came in and did an echo.

I took this picture at 3 am.... if I am up in the night I might as well document the funny moments.  I was desperate to lay down and needed Logan entertained.  I had him watching Baby Einsteins on the laptop.  The only problem was I didn't know how to keep the screen saver from coming on after 10 min.  It bought me about 10 min. though.

Not a happy kid.  We were transferred back to CICU right after this.

Back in CICU only hours later... already a happier kid.

We even got smiles!  Logan's looks can be so deceiving.  They are finally figuring that out.  He always looks better on the outside when his insides are wreaking havoc.

Eating the hoses from the blood pressure cuff... I let him do whatever he wants (we just don't tell the nurses)!

He is going to want to be held non-stop when we get home! 

Another echo... things are not looking well.  At least the doctors here will talk to us during the echo and not sit there in silence.

Our trick to keep Logan happy when he has to hold still- we put movies on the Ipod and hold them over his head.  This has saved us many times, and helps calm Logan down and make him forget people are poking and prodding at him.

He pulled a lead off... he is pretty happy with himself!

Bath #2- this one went much better, and his nurse this time Mary Catherine was an ANGEL.  We all loved her.

Clean boy!

AMAZING what a day can do.  He truly is a heart breaker!



Back to Intensive Care

We have been moved back to the CICU.  We can look at this two ways- a step backwards, or a chance for Logan to be monitored more closely.  I choose to look at it as a blessing we are back here.  He has his own nurse here watching him 24/7.  And she can focus on just him.
We had a really, really rough night and morning.  The x-rays last night showed an increase of fluid in his lungs.  The echo showed his right atrium was on overload and the septum between the right and left atrium was bowing the wrong way.  We are not sure if this is something that medication can help or if he will need another surgery.  They made the decision to transfer him back to intensive care, and since we have been here he has been doing better.  He refused to eat for about 8 hours and then I tried again out of desperation to give him some comfort around noon, and he finally ate some.  He has done better since then and even eaten one more time.  I just barely left him for the first time all day so I could shower, get out of my pj's, brush my teeth, and then Brad and I were able to get some breakfast/ lunch/dinner.  He is resting peacefully now.
Thank you everyone for fasting and praying for us today.  I asked Brad today if he thought Heavenly Father was tired of hearing from me.  I have been praying all day too.  We will hopefully talk with the surgeon tomorrow and get a better idea of what to do next.

Set Backs

Logan took himself off oxygen last night.  He pulled everything off, and his sats stayed high enough the nurse said it was okay to keep him off.  He HATES the oxygen.  He pulls it out constantly.  I think he made everyone think he was doing better than he is- he was looking so good and holding his own without oxygen.  They decreased his lasix this morning too.  He had a rough night with pain, but seemed to be doing better this morning.  Then this afternoon he decided he no longer wanted to eat.  His eyes started to look puffy, and he started kind of moaning.  This has been going on all night. 
Brad and I are trying not to freak out.  But all of his signs are symptoms of his right heart not working right.  His liver has also dropped.  They have done an echo, and x-rays.  We are waiting to get the results.  They also put him back on oxygen... he is not happy.  Please pray for my baby.

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.