Friday, August 31, 2012

St. Louis!!

What a tiring, fun, crazy, fast week this has been so far! We have been in St. Louis since Tuesday night for Pax's tests at St. Louis Children's Hospital. Our drive up here was the most quiet easy trip we have ever had...that's probably because we only had one kid with us though. ha! On the way up here we stopped in Springfield for our favorite coffee at Mud House downtown and then we spent some time at the mall letting Pax run off some energy.

Here he is introducing himself to the mannequin at Old Navy. He tried to ask for her number, but she didn't respond...

We successfully wore him out enough for him to sleep almost til we stopped for dinner in Rolla, MO. He wasn't very happy with our choice of Panera for dinner. He didn't eat a thing. We ended up making it to our hotel around 8:30pm. We were very happy with our hotel choice although we weren't happy to find out that we have to pay a ridiculous amount for parking. We are right in the heart of downtown St. Louis. The Ram's Stadium is literally right across the street from us. The St. Louis Arch is also just down the street as well as the Cardinals Stadium. After "exploring" the downtown area this week we have found it to be a really neat area full of really cool shops, restaurants and coffee shops. It's like downtown's that you would see in the movies where everyone walks everywhere and they live in buildings that have stores below them. There's a grocery market down the street that has apartments above it. You literally take the elevator down into the market. Pretty nifty. We also found the BEST COFFEE IN THE WORLD! It's called Park Avenue Coffee. They are also known for their "Gooey Butter Cake", which is a.m.a.z.i.n.g. We also found a little Italian restaurant called "Stefano's", which had the best veggie pizza I have ever had in my life. If you ever make it to St. Louis you have to try it. 

Okay so on to what this week has entailed other than the food...

So Wednesday our appointment was at 11am for an echo, EKG, chest xray and general assessment. We left our hotel an hour early thinking we could get breakfast on the way and maybe stop at the store for some hairspray and deodorant. (Our hotel also didn't have breakfast provided...geez!) Unfortunately we ended up getting lost and had to go to the hospital with frizzy hair, smelly armpits and extremely empty stomachs. Thankfully we were able to take a break between appointments to grab lunch in the cafeteria. Anyways, everything went very slow, but very well. We got out about 3pm and decided to go check out the Arch. It was the 1st time either of us has ever been to the Arch so it was pretty cool. After we went to the top and did some other exploring we took a walk down by the river where Pax fell flat on his face into the rocks and ended up with a black eye. Great, now everyone at the hospital is going to think we punched our kid! Anyways, here are some pictures. 

This is at the hospital on Wednesday. I guess Pax was trying to make Daddy play peek a boo.

This is the view of the Cardinals Stadium from the top of the Arch.

The big round dome looking thing is the Ram's Stadium. Our hotel is right behind can't see it though.

This is a picture of the Arch from just below it looking up. It's HUGE so I couldn't get the whole thing.

 Us in the little...and I mean little "elevator" riding to the top of the Arch. 

Thursday our appointment was at 11:30 for Pax's heart MRI. It lasted about 1 1/2 hours or so. Unfortunately we had to hold him down so they could place his iv, but when it came time to go back I was able to carry him back to the room where they gave him some sleepy meds in his iv. He basically passed out in my arms and then I handed him over. It was nice cause it wasn't traumatizing at all. We were released about 3:30pm so we decided to make a very fast trip to the zoo, which is just up the street from the hospital. We basically made a little circle to see the hippos, elephants, cheetahs and a couple other animals I don't remember. They closed at 5 so we only ended up being there for about 30-45 minutes, which was fine with me because I was a hot mess and I was exhausted. Something about hospitals makes you tiiiired! After that we made it to our hotel just before downtown became crazy. (There was a Ram's game last night.) We had a nice relaxing evening last night. 

Today was Pax's heart cath. It was scheduled for 10:30am, but we ended up having to wait until 1:30pm! Poor kid hadn't eaten since dinner last night and hadn't had anything to drink since 8am. He was not a very happy camper, but we successfully distracted him for most of the morning. They have an amazing rooftop garden. There are swings and lounging chairs as well as regular benches so you can take in the beauty. There are also a couple of telescope's to use if you want to spy on the rest of St. Louis. Here are a couple pictures that I took of the garden.

On the same level as the rooftop garden there is also a big playroom for the kids. It was full of absolutely everything that a kid could want. There was also a teen room, but we didn't go in there. There were video games (wii and nintendo ds), board games, puzzles, crafts, kitchen play area, musical instruments, blocks (I started a block house. :) and sooo much more! There was a huge dinosaur collection too that I'm sure Dakotah would have been so jealous of. Pax had a blast playing in there! Here are a couple pictures of him playing.

He also got to go for a ride in a car while we were waiting...

Okay so he finally got to go back for his cath about 1:30pm. He got done around 4:30 or so. He did great during the cath. They were able to balloon the aortic arch as well as the subaortic area that was of the most pressing concern. They originally didn't think they would be able to balloon that area, but they were. Unfortunately the ballooning didn't help much and actually caused his mitral valve to be leaky now and caused the leaking that was already in the aorta to go from mild to moderate. So basically it helped a little, but not much. So for now the plan is to communicate the new information with his cardiologists back home and come up with a plan. For tonight we are staying in the Cardiac Intensive Care Unit (CICU) so they can monitor him overnight. He has to stay laying flat for 5 hours so they are keeping him sedated until about midnight. Every once in a while he wakes up and cries out, but he konks right back out. At midnight they'll take him off sedation and let him fully wake up and then he'll be able to eat and drink. As long as he's doing good then we will get released sometime tomorrow. It's probably going to be a long night, but hopefully Pax will want to sleep even though he's been sleeping the entire day. Are we that lucky?? We'll see. 

We have been very very impressed with the hospital so far. The staff has been absolutely amazing! I thought that the Children's hospital back home was amazing, but it doesn't even compare to this place. Everything about this place was made with kids in mind. The only thing that Tulsa does better is that it's more accomodating to the parents. The rooms here are small, there's no bathroom in the room and no couch/bed except for a recliner. Oh well...I'd rather have excellent care for my kid than be able to sleep and pee in the same room as him. 

Tomorrow, we get to go to Branson and spend the night with my brother and sister-in-law and get to spend time with my Dad and step mom. And then Sunday we finally get to go home! I can't wait to sleep in my own bed and get back to normal routine! 

Okay, I think that's it for now. If you made it this far hooray for you! You have a great attention span. haha 

Thank you for praying for us and standing with us in faith for Pax's healing.


  1. Glad that the cath went well but sorry you got a mixed bag on the results. Praying for you all!

  2. So happy to hear all went well.Sorry about the more leakage and other issues.You have a strong little guy.

  3. I've been awaitin' to hear how your tip went. Prayin' for you guys girl!

    Love ya and keep me informed....'K'? :o)