Laughter, the Most Painful Medicine

Today is day 3 post-op. Yesterday was considered one of the worst days as far as pain goes. It was pretty bad but Chase is a trooper. I can't believe how tough he is. James and I actually slept well last night. Didn't wake up until 830. When Chase woke up, he looked a lot more like himself than he has since surgery. We were chatting and I said something funny and he started laughing, then crying because it hurt so much to laugh. So for the next few minutes it was the laugh/cry thing then finally just the cry thing. I told him I was really sorry and I promised I wouldn't be funny anymore.

Everyone here is funny. Especially Dr. Levitt. He came in yesterday when Chase was having a really bad moment and made Chase laugh which was actually not a good thing because IT HURT!! Really bad.

They've gradually been taking away his pain meds. He's off the Morphine drip and only gets it once every three hours but only if we ask for it and he's on a Motrin type drug which I think helps a lot more than the narcotics. He got his catheter out today. He was sooo excited. But now he has to get up and go potty which means a lot more moving around. He has absolutely hated us getting him up and making him walk. But after they took the catheter out, he said he needed to go to the bathroom. I didn't have to help him much. It was awesome. It's such a relief to see him getting his strength and personality back.



Chase was actually was doing just fine in the chair. He looks totally miserable but he likes to put that face on as soon as I look at him. He doesn't want me to think he feels good. He really wants us to know what we've done to him.

Funny story, so HD is very rare. Only 1 in 5000 kids have it. 95% of the time, surgery fixes the problem completely. 5% of the time there are complications like Chase's. We've never met another kid who has it. But it just so happens that there is a little boy here who is also from Utah, has HD and has come here for the same operation Chase has because of the same complication. Dr. Levitt operated on him right after Chase. He told us about each other so we could meet and share our experiences. When we met them, I can't tell you how amazing it was to talk to somebody who understands 100%. Our stories are so similar. We're planning to keep in touch and have the boys get together back home. It will be a great thing for Chase. The little boy's name is Alex and he's 6. His mom brought him over to visit Chase today in the room. They got along great. Chase's operation was a bit more complex than Alex's so Alex is healing more quickly and hasn't had as much pain. I tried to get a picture of the 2 of them but couldn't.

Chase Update

We arrived safe and sound on the 28th. Stayed the first night at the Radisson (same place we stayed for our last visit). It was kinda weird- like we never left. We had a good night. Went swimming, ate at the Big Boy.

Checked into the hospital Sunday morning @ 10am. They started Chase on some fluids via NG tube (NOT FUN). The NG is inserted through the nose and threads down to the stomach. He was so brave, as always. Sunday night was pretty horrible. No food, lots of trips to the potty and then irrigations every hour, so no sleep for anyone. We finally finished with all of that around 3:30am.

They came in a little after 6am to take Chase to surgery. He was in good spirits-having no idea what he was really about to go through. He sat up on the gurny as they wheeled him down. It was so cute and hilarious. Everyone loves him here. He's so sweet and has the huge dimples no one can get over.

Surgery lasted 4 1/2 hours. We waited anxiously, of course. Dr. Levitt said things went well. Chase was in a lot of pain after. He has a 4 inch inscision just below his belly button and it is very painful. He has a morphine drip and has been given valium as well. They came in today and made him sit up in a chair. He was none too happy about it, but did well. He is so strong and brave.

He can't eat for the next 5 days, but at this point, I don't think he minds at all because he feels pretty awful. We'll see what the next few days bring. I can't say enough about how amazing everyone is here. We couldn't be in better hands and are so thankful.










These pics aren't in order at all for some reason.

I was hoping that Chase would heal really quickly and that we could come home sooner than planned. But, I can see that he's probably going to need every minute of the 10 days on the itinerary. Thanks for all of the thoughts and prayers. We have really needed them.

HOmeSiCK

We are so ready to go home. Poor Chase had a little melt down last night. He really misses his dad. It's so hard to have our little family separated all this time. We just need to hang in there. 3 days to go.

We have tried to do some fun stuff to pass the time. We went to the aquarium and zoo last weekend. Both were pretty amazing. The aquarium was huge! We took the city shuttle down to the riverfront on Monday and saw Shrek. But Chase's favorite thing to do is go swimming at the pool in the hotel. There are quite a few kids here that are also patients at the hospital. Last night there was quite a crowd of little boys down at the pool and Chase was in heaven.

We've met a lot of people from all over. California, Mississippi, Tennessee, Florida, West Virginia, New Jersey, Michigan. They all have stories. Some are much worse than ours. It's been very humbling.

As for us, things are going fairly well. The treatments we are doing are helping. I'm still not sure when we'll return for Chase's surgery. But when we do come back, we'll do things a little differently. We're a little isolated here in this hotel. Live & Learn!

Anyway, we're all excited to get on the plane and come home. It has been a very long trip. But a good one.

AlmOSt HaLFWaY ThERe

Yesterday we met with Dr. Levitt again. We also went to a lecture given by Dr. Pena that was very interesting and informative. It was so nice to finally have a doctor who is an expert in colorectal abnormalities confirm the devastation these diseases cause patients and their families. Most doctors have no idea what to tell people who deal with this. As Dr. Pena said, it's a taboo subject. It's not pleasant to talk about and treating it is difficult, painstaking work that doesn't pay. Dr. Pena and Levitt are the only two doctors in the world dedicated to treating these problems so that their patients can have normal lives. INterestingly, Dr. Levitt told me that Primary Children's wants to start a colorectal center! He is coming to Salt Lake in September to present the program to them. It will take them a good amount of time to attain the level of expertise they have here, but it'll be a great thing for people out west in the future.

Chase & Dr. Levitt

Dr. Levitt is a totally awesome Jewish dude

We still have a week before we get to come home. We are going through treatments this week and tweaking them to meet Chase's unique needs. We're all a little drained and homesick. Today we're planning to get and see some of the sights.

Passing time in the HOtel with Legos

Don't worry Chase, you'll get it built!

Good News/ Bad News

We finally met Dr. Levitt today. It was kind of surreal. I've read so much about him and spent so much time researching him online from afar. Today we saw that he's an actual person! He was very nice. Spent plenty of time with us. Was patient and very knowlegable and optimistic. I liked him right away. He had a few ideas about what might be going on with Chase from the x-rays that were taken yesterday but the exam and biopsy under anesthesia would tell the story with more certainty.

Chase went in for the exam shortly after our consult with Dr. Levitt and he tolerated it all very well, as usual. We met with the Dr. again after the exam. He found something unexpected. Apparently, the surgeon who operated on Chase as an infant used a method that sometimes results in a particular complication. It seems, Chase is in a very small percentage of kids who develop this complication. So, the good news is that he found the source of the problem. The bad news is that Chase will need to have another surgery and we'll have to return to Cincinnati in the next little while. He also explained that the reoperation wouldn't guarentee that Chase would be fixed and that he may still need other treatment through out his life.

So, we shall see. We'll only know how successful the operation is a month after it's done. I was hoping things would turn out a little less complicated but it is what it is and we'll do what we need to do to make his life a good as humanly possible.

Waiting for the Exam


Looking a little out of it, after the exam


Almost back to Normal

Chase bounced back quickly once he woke up. We went to the cafeteria and he ate two cupcakes and a lemonade. We came back to the hotel and took it easy for a while but decided to venture out a bit later in the afternoon.

We didn't rent a car because the hotel has a shuttle to take us to and from the hospital and I didn't want to have to deal with the possibility of getting lost and being late for any of our appointments. So our venturing is done within walking distance of our hotel. There are a few places to eat and a little park close by. I took some random pics of some old buildings. I'm so intrigued by old things. There are lots of cool little cobblestone roads and old tree lined parkways. There's an historic cemetary nearby that my mom and I are dying to explore but I don't know if we'll get around to it. Anyway, we're planning to take the bus to Newport Kentucky this weekend and take in some of the area attractions.

ONe DowN 6 MoRE tO Go

Chase had his first procedure today. It went well. He was very brave and put up with a lot uncomfortable stuff. His biggest concern was preserving his modesty. Everyone did their best to accomodate him. Tomorrow's procedure will be a bit more involved. He's nervous about the anesthesia but I'm sure the nurses and docs will put him at ease. They are all very nice and great with kids.

My first impression of the hospital was great. Very organized, huge and staffed with excellent people. Even the cafeteria was awesome. Chase had bacon, eggs and hashbrowns for breakfast. Delicious!


We were done at the hospital by 10am. We came back to the hotel and just chilled. We did venture out to a nearby gas station for a few supplies but other than that, it's been a pretty low key day. I took Chase to the pool but we didn't stay long. He's used to having his brother to play with. Nothing's quite as fun without Tay:)



By the way, it's just me, my mom and Chase here. James stayed home with Taylor who is off track (not in school). My mom was able to get the time off work and come with me. I'm so grateful. She's been great moral support! So, Beth, no worries about cleaning the house. I'm sure James has it absolutely SPOTLESS! Ha..

And James, here's a picture of the huge freight train that drives by every 5 minutes. NO LIE! It literally goes all day and night and it is not quiet.


I really hope we can get some sunny weather sometime soon. The cloudiness is starting to get to me. The sky is so dark and gloomy. It's not as humid as I thought it would be but still..much more humid than home. My hair is a huge poof. It hasn't curled like this for a LOOONG time.

Well, wish us well for tomorrow. It will be so nice to get it behind us. I'll let you know how it goes.

Arrived Safe & Sound

So we woke up bright and early and got to the airport a good 2 hours early. The security line was really long so it was a good thing. The plane took off right on time. The flight seemed super long but it was nice and smooth until just before we reached Cincinnati. We hit a very huge and scary pocket of turbulence. Thankfully, it only lasted a few minutes.


Waiting at the Gate


Above the clouds in SLC


Crossing the Mountains


First Glimpse of Cincinnati/Kentucky

It's very green here. Lots of huge trees everywhere. Very pretty.

Our hotel is okay. It feels pretty small when I think of how long we're going to be here, but we have a beautiful view of the Ohio river and the city. The surrounding area has kind of a country feel. There are lots of old buildings and houses and churches. There's a church just a few blocks from our hotel and it has a bell that chimes every hour. Kind of charming:)





The Views





We're pretty tired, so we've just been hanging out in the room. I can see that Chase is going to be extremely difficult to keep occupied. He's already gone through all of the stuff I brought for him. Should be interesting.

We have our first appt. tommorrow at the hospital, bright and early. It's not going to be much fun for Chase. But hopefully the Dr. will be able to find something he can fix. That would be great.

New Adventure

Time to start blogging again! My newest adventure is drawing near. I'm heading to Cincinnatti Ohio with Chase to see a Doctor who will hopefully be able to make Chase's life a little easier. It's been a long process. But in exactly a week, we'll be on our way. I'm trying to be super positive about all of it. I'm actually pretty nervous. We'll be gone for 2 weeks and Chase will be undergoing some pretty unpleasant procedures. But hopefully, it will all be worth it! I'm planning to blog the whole experience. It'll be a good way to keep it all in perspective. Any and all prayers will be much appreciated:)