Home...again

Finally home...again. I love all the nurses and the staff in the PICU, but I definitlely hope we don't have to go back.

They finally figured out what kind of infection he has so they were able to give him a more specefic antibiotic. They put a picc line in so we could give him the injections at home, much better than staying in the hospital for another 3 weeks. It took them a few tries to get it in though, poor little guy.

It was hard having to be away from Owen again, but luckily Tome was able to get another week off work and my mom was still in town so she was able to stay at the hospital with me. I'm really glad she was there, she's definitely my translator when it comes to medical stuff.

In again

Poor little Conner is in the hospital again!

 

We took him to his post op check up with the surgeon on Friday. He said that everything looks good and that he doesn't need to see him again. But then on Saturday I noticed that his incision was looking just a tiny bit red, then by Monday it was a lot bit red. I called the surgeon's assistant and she told me to text her a picture of it and she'll show it to the surgeon. (Yay for modern technology.)

 

The surgeon told us that it is definitley infected and we need to take him to the ER at the Children's Hospital immediately. They admitted him back in to the PICU and started him on some IV antibiotics. They ran some tests to try to figure out exactly what kind of infection it is. We met with an infectious disease doctor and he explained that until they know exactly what it is, they're treating it with a very broad antibiotic that treats a variety of infections. Hopefully they'll know tomorrow what it is so they can give him a more specefic antibiotic that doesn't have so many side effects.

 

It's been weird being back in the hospital. We have a different room though and the couch/bed is almost a little more comfortable. I think Conner is a little more comfortable too. He's found some fun ways to entertain himself.

 

 

Home!

It is so nice to finally be home! After 2 weeks of sleeping on a couch cushion my bed has never felt so comfortable. 

Conner is definitely happy to be out of there! Since we've been home he has been so much more relaxed. And finally being away from cafeteria food is just an added bonus. 

I am still amazed that he had 2 open heart surgeries and after a 2 week hospital stay he came home with a band aid. So grateful for modern medicine!

Owen was SO excited when Conner came home. I put the car seat down on the floor in the living room and Owen didn't know what to do he was so excited. He was jumping up and down and making this little squealing noise and he kept trying to unbuckle him from the car seat. Cutest thing ever. 

Almost home!

It is so good to see his sweet little face without any tubes or wires. 

This poor little guy! I can tell he's tired of being here. He's down to just some monitoring wires so it's been a lot easier to hold him. He has an IV in his foot which is driving him nuts. He hates having things on his feet (I can never get him to wear socks) and they have this little splint looking thing on his ankle to keep him from moving it so much. It would drive me crazy too!

We we're hoping to go home today but he had a little arrhythmia episode early this morning and they want to keep him for another day or two to monitor him and see if it happens again. 

He is finally starting to smile again which makes it a little easier.

He's also been teething. Which has made this experience so much more fun. 

We are so excited to go home and I know Conner's excited too! 

Surgery Part 2

The tubes and wires are slowly coming out and he's starting to look like my baby again! He's a lot more awake now and will just lay and play with his hands or stare up at the tv. 

But he's a lot more awake now and pulling on tubes and wires. I'm pretty sure he completely hates being on oxygen, he's constantly trying to pull the thing away from his nose. 

The workers in the cafeteria are getting to know us pretty well. We're only in there about 4 times a day. The food is pretty good for hospital food, but after 8 days it starts to get a little old. They have a pretty good variety but we've cycled through it about 4 times. 

Conner should be getting a few more tubes out tomorrow and hopefully he'll be off the oxygen tomorrow too!

I knew this was going to be hard. I prepared myself as much as I could mentally. I knew it was going to be hard to hand him over to the nurse and watch her walk down the hall. I knew it was going to be tough to sit in the waiting room and try not to think too much about what they were doing to my baby. I knew it was going to be scary to see him with all the tubes and wires going in and out of his little body. But not being able to hold him while he's right in front of me crying as hard as he can...don't think I ever could have prepared myself enough for that one. I know he's uncomfortable and he just stares at me with this "why aren't you doing something about this" look. So sad. 

I've definitely had a lot of emotional ups and downs this week. Conner needing the second surgery kind of through me for a loop and I think it took more out of me than I realized. It was hard enough getting through the first one and it was pretty much torture the second time around. But being in the PICU for a week has given me a new perspective on our situation. 

There's a girl in a room down the hall that won't be going home. 

And a little boy who came in last night and only lasted a few hours.

 Two routine heart surgeries and a 6-8 week recovery period doesn't seem so tough anymore. 

Surgery Part 1

The surgeon's assistant called me on the Monday after we met with the cardiologist and wanted to see if the 30th would work for Conner's surgery. I was a little surprised. I knew the cardiologist wanted him to have it done sooner, I just didn't think it was going to be that soon. 

All the pre op stuff went pretty good. It took them a few pokes to get his blood drawn and he definitely was not liking it, but he did really good for everything else. He's pretty much a pro at getting EKGs and he laid pretty much perfectly still for his x-ray, he was mesmerized by the machine.

It was hard not letting him eat for 6 hours before the surgery. We had to be at the hospital at 5:30 in the morning and the surgery was scheduled for 7:30. 

He looked so cute in his little gown! 

The hardest part for me was giving him to the nurse and walking away. Definitely made me cry. It was tough just sitting and waiting but I did okay if I didn't think about it too much. We had an amazing nurse, Christy, who was assigned to him and she was such a huge help. She was with us for all of his pre op stuff and she came out at least once an hour during the surgery to give us an update. 

After his surgery the surgeon came out to let us know how it went and we got to get a glimpse of him as they wheeled him to his room. Christy said they needed about an hour to get him all settled in and then she would take us back to see him.

About an hour and a half later, the surgeon and the cardiologist walked into the waiting room. My heart pretty much stopped. I knew it was the doctors who delivered the bad news, pretty sure it was a result of watching too many episodes of Grey's Anatomy. I immediately thought the worst, but the first thing that the surgeon said was that he was okay but there was just a little complication. We knew that during his surgery they had found an ASD that was pretty close to the VSD but it was small and they were able to just stitch it closed. But there ended up being a little flap of tissue hiding how big it actually was so the blood was going through the hole in to the other part of the heart instead of up into the lungs to get oxygenated. I didn't understand any of it at the time, all I heard was that they needed to open him up again. 

The surgeon had another surgery scheduled so we had to wait till about 8 that night for him to go in again. Longest day ever. 

His recovery has had its ups and downs, but he's doing pretty good considering he had 2 open heart surgeries in one day. 

All of the tubes and machines are pretty intimidating and it's hard to see your baby hooked up to so much stuff. 

We have been so blessed to have Tome's parents and my mom here and my brother and sister close by to help with Owen. The support has been amazing and we know there are people everywhere praying for him. We have been so blessed!