Progress Report

Just wanted to give you an update on how the little champ is doing.  If you saw her now you would have no idea she had open heart surgery a week ago.  She complains that her “tummy” hurts from time to time (and yes, she uses air quotes) but that’s really the worst of it.  She’s such a smartie that she’s started telling us her tummy hurts when she’s getting punished for something (which 9 times out of 10 is a crayon-related incident–she’s currently on crayon/marker/colored pencil probation).

She’s really doing just fine but we’re still keeping her somewhat quarantined for a while to make sure she doesn’t pick up a virus or get an infection. I can’t complain about not going anywhere with her since getting her out of her carseat without picking her up under the arms is quite difficult. We’ve been going on walks on some trails during the warmer weather days and she cried when we passed the playground and didn’t stop.

Baths are difficult because we only put an inch of water in the tub and have to sponge her and get her out fast so we don’t get her incision wet. She cries for “more bath please” when we take her out. She gets tylenol every 4-6 hours for pain and she probably doesn’t need it that often but she loves the taste and asks for “yummy medicine”.

We’ve been feasting like kings on the food you’ve sent over. Veronica’s favorites so far have been green beans and garlic bread. I want to say a huge thank you for your generosity and also for your impressive cooking skills!

HOME!

We said goodbye to the doctors and nurses at the hospital today and we are now officially home for good.  Her lung treatments were a success and her going home orders to finish the job are to blow lots of bubbles and stay active around the house for the next 2 weeks. She does have a soft murmur, but it’s the type every other kid her age is going to have and no big deal at all. We see the cardiologist in 2 weeks for a follow up visit. She’s on 1 medication right now and should be taken off if everything is good at that visit.  I’m going to go into hibernation mode pretty soon to catch up on some sleep. It’s impossible to sleep at the hospital and even though Chris and I took turns going home to sleep, the emotional stress just wears you down even when you’re getting zzzz’s. It’s good to be home.

No Early Release

Scratch the going home early bit. We’re going to stay another 24 hours so she has a chance for her lung to reinflate before we go home. She is entirely free of wires right now and gets to run up and down the halls of the ICU. They’re just going to do some physical therapy today and we should be able to go home tomorrow morning.

And Now for Some Selfishness

Now that we’re going home it’s going to be an adjustment getting used to treating her a little more gently and taking care of Veronica post-operatively. Anyone who comes over for the next 6 weeks should be aware that to pick her up you need to scoop her up instead of lifting under her arms. We would love to have visitors once we are settled at home but we ask that you stay away if you are experiencing any cold or flu symptoms.

I have been instructed under no uncertain terms to ask for help in the cooking department. I feel selfish saying this but if you are wondering if there’s anything you can do, we would love to not have to think about grocery shopping and meal planning, cooking and cleaning. Anything that we can store in the fridge or freezer and pop in the oven when needed is great.  Thank you for your care and concern while we have gone through this. It’s such a relief to have (almost) over and I can’t wait till we are all home again as a family.

 

Riding the Rollercoaster

If you think you’re on an emotional rollercoaster reading this blog, just imagine what it’s like to be here living it! We’re back to everything being A-Ok again. Her lung will heal itself and is already  getting better. She will do lung exercises every 6 hours to strengthen them. She had an echo and an EKG and everything looks great. And the best news of all? She has been given the approval to go home tomorrow afternoon! As long as she has a good night we’ll be out of here around 1pm on Thursday. She is almost entirely free of tubes and we’re going to walk around the ICU tonight with her.  She does have high blood pressure so she’ll go home on two medicines but we’ll reevaluate those in a few weeks when we see the cardiologist.

She’s currently sitting in her bed eating mac n cheese and french fries. Our baby is back.

 

 

Update On Progress

So it turns out she does have some collapsing in the lung. We will be staying in the ICU overnight and it doesn’t look like we’ll be going home early. She’s back to not eating or drinking right now because she’s going to have a sedated echocardiogram in an hour to see if there is any fluid around the heart. She’s going to have a PEP treatment for the lungs to try to expand them in just a bit.

Reports from Day 2

This is her room in the ICU. It is the loudest room ever, full of beeps and alarms and motors running. It’s no wonder she can’t sleep!

This is what she looked like yesterday, before most of her tubes came out. Almost none of that stuff is there anymore. The  long bandage is her scar, which we haven’t gotten to see yet.

I got to hold her a lot last night and she was SO happy. And she’s on juice now and ate some yogurt. She’s watching cartoons and wants to be sitting up. I think today is going to be a very good day. I may even speculate that we might get moved to a less intensive care floor for today and may possibly go home tomorrow. But that’s just a guess if things continue to go well.

Her kidney function is doing well now and the cardiologist came in last night and told us he thinks she does NOT have a collapsed lung, he thinks it was a bad x-ray. They took another one this morning and we’ll know more in a few hours. I got to see her X-ray and saw how gigantic her heart is. I was astonished. She needed this surgery much more badly than I even thought. We got to listen to her heart and there’s no more whooshing sound. Just a normal heartbeat now! What ever will I blog about?

The Morning After

We’re in the Cardiac ICU getting 1 on 1 nurse to patient care.  Her chest tube is already out and so are her pacemaker wires.  Soon we’ll be able to hold her and give her a drink, which is what she wants most in life right now.  She wasn’t able to drink anything due to her stomach not being awake yet from the surgery so all night we sat at her bedside and played the “more cold binky” game, dipping her binky in a cup of water and shaking off the excess so she could feel the cool against her lips.  Today was a pretty miserable day, but I have a feeling tonight we will see a big change after she gets some apple juice in her.

The main things we’ll be working on for the next few days:

• Her left lung collapsed a teeny bit. This is normal after this type of surgery and they’re not worried about it at this time. Just working on getting it going again.
• Her kidney function wouldn’t win a ribbon at the state fair. Again, normal. Getting some meds for this.
• She has “bundle branch block” which just means that the electrical conduction in her heart did get altered a tiny bit, but it’s nothing that requires medical attention. Just something the cardiologist will keep an eye on when we see him from time to time in the years ahead.

She’s getting excellent care and I couldn’t be more pleased with how things are progressing.  I don’t think we could have asked for a better outcome and we’re looking forward to seeing her back to her old self again. Her first two words upon waking up from surgery were “mommy” and “binky” and we knew right then that she was going to be all right.

I’ll try to post some pics tomorrow. Thanks to everyone for your well wishes and prayers!

Surgery Is Done

Surgery is done!

Everything went well, the surgeon just came out to tell us how it went. He was very pleased, he said the incision he made is nice and small, that it went exactly as planned with no complications. She’s still under anesthesia right now and is getting sewn up. He also does not foresee any need for a pacemaker at this point. Just a perfect surgery.

 

 

And We’re On Again

If you’ve noticed I’ve put up a ton of blog posts all at once, it’s because I’m not going to be home this week to put these up. We got a call today that veronica’s surgery is back on as originally scheduled! So she is back to having surgery Monday morning November 2nd at 8:30. I am so glad that we are finally getting this thing done and we don’t have to wait another week. We’ll let you know how it’s going tomorrow afternoon. Once she gets through surgery the next big deal will be when she gets her pacemaker wires removed. By Tuesday afternoon we should know just exactly how things are going. I’ll update when I can.