Tuesday, March 15, 2011

HOME is where the HEART is

Hello from HOME!!!  I have to admit, I never thought I would be at home today, only five days post op.  We were told to plan for 7 days, and we overplanned!  There were so many clothes we didn't wear, many activities and gifts we brought for Andrew to do that he never got to!  Tons of snacks we brought along to eat so we could avoid overpriced hospital food every day, and now my pantry is overflowing with most of it!  We are coming home with much less laundry than I thought we would (it's already done! Ha!) Our suitcases are practically still packed with clean clothes.  But better to be safe than sorry, right?  We are just thrilled beyond belief to be home.  Andrew most of all!
Monday morning (Post op Day 4) we woke up and they sent us straight to have an Echo.  I wondered why it was so early (we were still sleeping when they came to get us!)  The nurse said she suspected that they wanted to get it done so doctors could look at it before rounds.  Andrew did not enjoy the echo.  Normally he lays still and happily watches a video while they are doing it.  He definitely has acquired a new fear of doctors and nurses and unfamiliar people.  I was hoping this wouldn't happen, and I hope it isn't permanent.  He has always loved his doctors and has never had anxiety about going to the doctor.  Of course, who can blame him now?
He has just been eating great!  Monday morning he wanted eggs and pancakes and apple juice!  I was worried he was going to get used to this eating in bed thing!  Ha!
I love this picture of his foot hanging over the edge of the bed!  He was making himself at home by this point!  Ha!  His face cracks me up too.  That's our Andrew!

When doctors came around and asked us how we felt about going home, we almost fell over!  I mean, we knew he was doing better and had turned the corner really fast.  But HOME?  Already??  It was only Day 4 post op!  We were ecstatic!  We immediately went back into the room and started packing!  We hardly knew where to start!
While we were rushing around trying to figure out where to put everything... Ben, the child life specialist, came in and asked if Andrew wanted to go to the playroom and do a craft with some other kids.
He got really into it!  I was so impressed!  I typically don't get out craft projects like this at home, but he knew right what to do!  Thank goodness for school!  He has obviously learned how to do these things by going to school every day!  I was so proud of him!
He just dug right in and started making a special rainbow!  It was actually even much neater and more creative than the other kids at the table!  Ha!  Most of them were just clumping all the paper together and using browns and blacks.  Andrew used cheery colors and spread them all out on his rainbow!
So precious.  He really enjoyed doing this and getting to work with some other kids too.  He has missed school and his friends so much!  By the way, these activities and the child life specialists are funded by the Children's Miracle Network.  Ben (CLS) is just the most awesome person.  He is so sweet, and works so well with the kids.  Andrew just loved him.  They work so hard to make these hospital stays as enjoyable as possible for the kids.  We were able to give all the donations from Andrew's birthday party to Ben to use with Child Life.  They were thrilled to receive some new things!  So thanks to those of you who donated.  Also, if you ever get a chance to donate to the Children's Miracle Network, it is a wonderful organization to support!
Does this show his spunk is back or what?  Ha!  He cracked me up, going up and down the halls waiting to be discharged!

Ga Ga got him the robe and I got him the slippers (they are Woody boot slippers) and we just got these things out right away Monday morning once we learned we were going home!  I started pulling out new movies I had bought for him and we gave him a lot of his presents that we had been saving for the long, boring days we thought we would be spending there this week!  Not so much!  Andrew keeps saying, "Mommy and Ga Ga give me presents every day!"  Ha!  He just didn't feel good enough to open anything much before Sunday, and Sunday he had so many visitors that his time was definitely occupied!
This cracks me up.  He was literally zipping up and down these hallways at full speed, going faster than we could run!  Everyone was getting quite a kick out of him!  I think the nurses and doctors in the hall were all in agreement that he was ready to go HOME! 

We finally got him to come back to the room and play on a laptop (again, the Child Life people brought for him to play with) while we finished packing.  When we gave it to him he goes, "Oh wow!"  It was so funny.  And so nice to have our boy back, personality and all!
We got home yesterday around 2:00.  Andrew dumped out every single toy bin he owns, and played with every train, car and toy he could find!  He missed his home!  Ga Ga gave him his E.T. she bought for him to open in the hospital (but never got the chance!) and he was so happy!  The first thing he did was get out his doctor's kit to "fix E.T.'s heart."  
Giving him "medicine."  Oh, and do you like the socks on his hands?  They are doctors gloves.  Just so you know.  And yes, he thought of that all on his own.
Looking in E.T.'s ears.
Say "Ahhhhhh!"  He was so sweet and careful with E.T.  Like he was a real doctor.  It was just too precious for words.  He kept saying, "There!  You're all better now!"  And talking to E.T. just like we all talked to him when he was in the hospital.  Then he got on his little fire truck and told me he was "taking E.T. home now!"  I guess his hospital stay was over too!

I think hospitals and doctors are going to be on his brain for a while.  We have noticed that he is still startling himself awake a lot, and that he now constantly wants someone to lay with him, or wants to come in our bed.  Bless my mom's heart, she spent the night at our house last night so Craig and I could get a good night's sleep, because we knew Andrew would want to come in our bed!  I slept for 11 hours straight!  Ha!  I guess I needed it.  It was so nice to be able to sleep in a bed, without the interruption of beeps and monitors and Andrew waking up crying... Thanks so much mom!

Last night Andrew made Ga Ga lay with him until he fell asleep in his own bed.  My mom, Craig and I were able to squeeze in the season finale of The Bachelor while he slept!  Ha!  We thought we'd be watching it in the hospital, but it was so nice to be home!  Then mom just crawled in bed with Andrew so he'd feel secure.  He woke up a couple of times during our TV watching and we took him back to bed.  I'm not sure how we're going to handle these sleep patterns... I told Craig we better go shopping today for a king size bed!  Ha!  Especially once our baby girl comes... I can't imagine Andrew squeezing in between us while I'm up in the middle of the night feeding the baby in bed too!  Ah, the joys of having kids.  And I wouldn't change a thing.

He and daddy are napping now (because of course, daddy had to lay with him!)  They said he'd probably need a nap for a while, which is fine with me!  It is so nice to be home this week.  It is spring break so Craig is off too.  We are just enjoying being home.  Normally I'd insist we go on a mini vacation somewhere, but now I am just beyond grateful to get to sleep in my own bed, and be home with my family.  It is the best feeling in the world.

Many of you have been asking how the actual surgery went, and if it was successful in lowering the pressures in Andrew's heart.  Basically, we won't know right away.  The surgeon said that everything did go well, and it was successful in terms of him being able to widen the pulmonary arteries.  Now we just wait over time to see how his body responds to it.  I printed off this lovely diagram to help!  I'm a visual learner... Ha!
This is an actual diagram of Andrew's heart.  You can see the right and left pulmonary arteries, and the stents that were there, shaded in gray.  You can see how much more narrow the left PA is than the right. Although it was also smaller than normal.  Those narrow arteries is what was causing the pressure in the right ventricle to be so high.  I am not sure what all the numbers and percentages mean, but we do know that only about 10% of his blood flow was going to his left lung because of that narrow PA.

So basically what Dr. Davis did was cut through the stents and took out pieces of them (he couldn't get them all out because it would have left too many holes and there was too much scar tissue).  Then he patched them both open wider, so that they can potentially continue to grow on their own.  We are fully prepared to go back and learn that he needs stents in them again.  This would occur if they weren't growing on their own, which they have a pattern of not doing.  We are just hopeful that the widening will help lower the pressure on its own without stents.  We made a follow up appointment with our local cardiologist and we should learn more at that time.  Please keep the prayers coming that the surgery was successful in doing what it was supposed to do (lower the pressure in his heart).

Thank you again for everything you have done for us.  We are continuing to get visitors while we are home, and we love that!  You are welcome to stop by to visit, as long as you've been healthy for up to 7 days.  Andrew loves the company, as we will be cooped up again for the next 6 weeks!  However, the doctors did say that we don't have to be quite as worried about germs as before the surgery.  He even okayed Andrew to go to preschool in 2 weeks, just in the mornings a couple days a week!  I think this will be so good for him!

It's so good to be HOME!

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