Friday, January 15, 2010

We are home AND the plan...

Surprise!  We are HOME!  I honestly think this is the record for Andrew.  He has become a "pro" at having caths (I honestly have lost count as to how many he's had...sad, I know).  But I don't remember one time where he recovered this fast and got to go home the same day.  He's a champ.  He is not quite himself yet, still groggy and tired (and a little grumpy!  Ha!) but he was glad to be home and was asleep before we even put him in bed.  I'm sure his own bed had to feel so good to him.  It felt good putting him in it! :)

On Thursday when we had our pre op appointments, Andrew was such a good boy.  He again knew how to behave and never flinched at a doctor, until they tried to draw blood for labs.  That was pretty much the end of it!  I think it is going to take him a little while to forgive the doctors for that!

All was well when he found this cool train toy in the hall while we waited.

By the way, these neat toys in the hallway (there are a lot of cool things around every corner!) were made possible by donations to the Children's Miracle Network.  If you ever want to consider supporting the CMN, it does make a big difference for these kiddos who have to go through so much!

He was also entertained by the chalkboard in the room.  He wanted mommy and daddy to draw a monkey!  I should have taken pictures of them- they were so bad!  Mine was better than Craig's though! Ha!
He was so entertained by books while we waited also.  I read Elmo Goes to School at least three times, and each time we sang our ABC song (yes, Andrew can sing the whole thing!) and said all our shapes and colors.  He loved that Elmo had a backpack just like his.  I think he misses school!  He hasn't been there in almost a month!
I cannot remember what part we were reading, but gosh I love this picture.  He was so into these books!  This book was Tarzan and he loved it so much that Ga Ga had to buy him the movie that night to add to his DVD collection!  How can our little monkey not have the movie Tarzan??  All about gorillas, so I think it is a must!

After all of his appointments and meeting with Dr. Divekar, we checked in at our hotel and waited for Ga Ga and Papa to arrive.  When they did we headed to Texas Roadhouse for dinner- this is a favorite place when we stay overnight in Iowa City.  I think Andrew ate three of their dinner rolls with cinnamon butter!  Like I said earlier, he slept all night in my arms, and I soaked in every minute of it.  He slept really well and was such a good boy the whole time.

The cath today just went amazingly well.  Although I have to admit, I do have some mixed feelings now that it is over and Dr. Divekar spoke with us.  True, everything went perfectly today.  They were able to get into the left PA and expand the stent.  There were no complications and Andrew couldn't have done any better.  The tough pill to swallow?

There is nothing more they can do.  In the cath lab that is.  I honestly felt like they didn't do much of an intervention today besides measure pressures.  The left stent only expanded slightly more, and both the right and left stents are as large as they can be.  The problem?  He's growing and his PA's need to grow more.  He was only 9 months old when these were put in.  Praise God that we've been given as much time as we have.  It is just a miracle that they've helped Andrew for almost 2 1/2 years.  The good news is that back at 9 months old, his pressures were measuring in the 160 range and his blood pressure was 100.  The pressure in your heart should never be higher than your blood pressure.  Last February, they were able to bring things down to 70-65, and today looked even a little better than that (59).  So we have cut his pressure down by 100, which is awesome.  This is partly because of the stents, and partly because those stubborn arteries finally decided to grow!

So now that they want to grow, the current stents are going to stop them again.  Like I said, they can't go any larger without open heart surgery.  Deep breath
Here is Andrew coming out of the cath lab on his way to recovery.

After he woke up in the recovery room, he was...let's put it nicely?  Ticked off.   He refused to keep his legs straight (he's supposed to for 6 hours- yeah right).  Once he realized he had an iv in his arm and cords attached to him everywhere, he let us know he was mad!

Here are his precious little feet.  I have always loved his feet so I had to take a picture.  The x's are where they take his pulse.

He refused to lay down any longer and wanted daddy, so they let him sit on daddy's lap, as long as he tried to keep his legs fairly straight.  At least this calmed him down.
Then he wanted mommy.  And a drink.  And ice chips were not good enough.

They finally moved us to the pediatric floor and let him start eating and drinking.  He guzzled water and kept everything down just fine.  He especially loved the ice cream.

Cardiology came down to the room to do an echo (ultrasound of his heart).  This time he wanted Ga Ga.  He wanted to spread the love!  Ha!

Once he perked up a little, he wanted to open his present from his heart buddy Logan, who was upstairs in the PICU and recovering very well from his surgery on Thursday.   Logan gave Andrew a Woody and Bo Peep just like his.  Andrew was thrilled and clutched them the rest of the day.  (Well, as good as he could clutch them with this iv board on his hand!)

He rode the little car up to get his X-Ray and he would not put his new friends down so he could steer!
For all of you heart moms out there who want pointers on how to make an X-Ray go smoothly (and all things doctor related for that matter... except maybe pokes!) I'm telling you, get this video:

You won't regret it.

He even stood right up by the screen all by himself before they even told him to.  He knew exactly what to do (this might have something to do with the fact he's had, oh, about 100 of these in his life!)  He's just learned they aren't going to hurt and he's used to the routine I guess.
When we got back to the room he felt more like playing.

He was very serious watching Woody and Buzz though.  He didn't really smile too much today or tonight, which is not like our Andrew.  He is just wiped out and I pray he sleeps through the night.
So, where do we go from here?

Dr. Divekar said things aren't urgent.  He said surgery can take place probably within the year sometime, whenever it works out for us.  We will also see our local cardiologist in 3 months and get his opinion on the timetable.  The thing that is hard to admit is, that if we are going with when things work out for us, that means we are looking at this summer.  Deep breath again.  I know it is earlier than the time frame we were given.  But, being teachers, summer just works out best for all involved.  We won't have to worry about him going to day care or getting sick.  Craig and I will have almost 3 months off with him to give him optimal time to recover fully.

Plus, a year from now is near Christmas time.  And his birthday.  And I just don't want to mess with those things.  I want it over with.  I can't believe I'm saying this, but I actually think I am ready for it.  We've known about it for so long, and it has been looming over our heads for so long that I just want to let the air out of the balloon, ya know?

Of course, God's timing is perfect timing, so we will go in the direction that He leads us.  We will listen to Andrew's team of exceptional doctors for guidance on what the best timetable is for Andrew.  If it doesn't work out with our schedules, then we don't worry about it.  We miss school.  We do whatever we have to do to give our little boy the best chance possible.  We ask for your prayers in the upcoming months as we make these critical decisions.  Pray that God will shed His light on the perfect time for Andrew's surgery and make it clear to us.  Pray that we will have peace with the decision and that God will protect Andrew through it all.

Thank you so much for all of your continued prayers and messages today.  We appreciated it so much.  It was so overwhelming to read all the messages and see how many people were thinking and praying for our son.  It means so much.

We are off to sleep in our own beds tonight!


Gloria said...

praise our Lord, your post was what I needed to hear tonight. We sure have had several mighty warriors having some serious stuff done these last few days. I follow both your blog and Logan's blog. I have fallen in love with both these guys. I don't say a lot but I do read them. The tears of fear and worry have fallen and now the tears of joy for the boys. I laugh when you laugh and probably cry almost as much as you. Thank you for sharing your family and your precious family with me. I will continue to pray for you and with you about the best time for Andrew's to have his surgery. God know's and He will let you know when, I have that faith. God bless and a good night rest.


Erin Burton said...

I am so glad you are home... and all went well! I was interested to hear what the next step was... and I am glad to hear you think you are ready for it. What good timing for the summer too. I sure hope everything works out. Happy healing at home... have a great weekend.

Tracey Snyder said...

YEAH! I was wondering about you guys!! Jordan got crabby and was just uncomfortable this afternoon so I wasn't able to make it over.

I'm so glad to hear you made it home tonight!! I know you really weren't expecting it so what a nice surprise!

We will be praying for Andrew and his upcoming surgery! I know all too well the fears and anxiety that surgery brings. Keep the faith and God will let you know what the plan is.

Tracey, Jeremy, Riley, Drew and Jordan Snyder

Anonymous said...

Long Sigh...that's how I felt after I read your last post. I'm so thankful that today went well but bummed that surgery is the only option. Your words couldn't ring truer though b/c when you know it has to happen, I feel the same way...let's just get it over with! The anticipation is so awful!!! I'm so glad that you're back home & doing well. We'll be praying for you guys as you make a decision on the timing of the surgery. God will give you the strength to face whatever is ahead...He always does.
Talk to you soon..
In HIS Grip,
Emily for her boys

Jessica said...

This is great you guys are home and there were no complications with the cath....Surgery is always a very scary thing and I will pray that all the timing yours and God's and Andrews can all be in sync. If you need anything at all please call.

Stefenie said...

I loved the pics of Andrew enjoying his new Woody. I knew he would love him as much as Logan does.

I am a little relieved to hear that you are feeling a bit better about the news from yesterday. I know it was hard to hear and a bit frustrating that more couldn't be done. You are will be nice to just get it over with but at the same time you never want it to be time already.

Stef, Ryan, Wyatt and Logan

Heidi Schmidt said...

It's great that Andrew recovered so well from his cath. Sorry to hear that surgery will be coming up. I'm like you though, once you hear about it you just want it done. I think the end of school would be more than perfect for you guys. Who wants their baby having surgery during flu season anyway? Yuck. We'll keep Andrew and you guys in our prayers. Just remember to have fun and enjoy each day! I know you do ;) Soon surgery will be another memory (and won't that be nice!).

Heidi, Kevin & Ellie

The Carter's said...

I'm so glad you guys were able to go home after the cath, and that Andrew did so well.

I really hate to hear that the next step is surgery. We'll definitely be in prayer over the date. God's timing will be perfect, and he'll lead you to know when it should be. I completely understand your feelings about being ready for surgery. It's so hard waiting, yet you're never REALLY ready.

You all will be in our prayers, as always! I hope Andrew is feeling back to his adorable self really soon, and that he can back to school. (I'm sure it feels great that he misses it now...a little easier to leave him there when you're at work. :)

Big heart hugs and prayers,

Steve said...

So glad to hear you guys got to sleep in your own bed! That almost never happens! Andrew was sure a good boy. Praise God things went so smoothly.

We will keep you all in our prayers as plans for surgery emerge. We know God will guide you on the path He so chooses.

The Spencers

Ann said...

Jen and Craig:
Sorry, I'm so late reading all your updates. Praise God that all went well for Andrew. I pray for him everyday and will continue to do so.
So many people to pray for right now,but I know how much prayer helps.
Glad to hear that Andrew's friend Logan is do well and I've added him to my pray list.

God Bless,
Ann S

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