The Journey of a Sweet Little Boy and His Special Heart

Tuesday, January 4, 2011

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!


5 comments:

  1. This is my 3rd time trying to post! I've been checking the blog nonstop for an update.Glad things are going forward, slowly but forward. we have learned to reconize and appreciate the small thinggs in life. Maybe Logan wants to see you do the "pee,pee dance" for him to pee. So much for "The City of Brotherly LOVE" or maybe thats the problem, you are a Sista. But the Good still shines like a glimmer in a deary world. Thanks for the update, We will continue to send prayers your way!

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  2. You are so good at keeping everyone updated! I have been checking back regularly to see how cute Logan is doing. He is such a strong fighter and you and Brad are just as strong. My thoughts and prayers are with you as you continue on. xoxo

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  3. I cried at the teddy bear stranger story and laughed about the doctors who actually talked during the echo - after tons of echos here, I know exactly what you are talking about! By the way, Enzo loved to put his blankets on his face too, so we got him a knitted one with the holes - so he can always breath when he's hiding away from the world. I'm glad things are going a little more smoothly for you (and that you were finally able to get some rest), and will keep praying for Logan to keep improving. I too check your blog millions of times a day to make sure I know the latest - thanks for taking the time to keep us all informed.

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  4. I keep checking your blog too! I am constantly thinking about Logan. I love seeing all your pictures and pray that you and Brad and the doctors will know what to do next. I hope little Logan's heart will heal and improve soon! He is so cute! Glad you could get some sleep. Still praying for all of you...

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  5. Great pics Heidi. Keep em coming. I love hearing about his progress and how you are doing in all this.

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