Aaron's Baptism

I'm backing up a little, but I hadn't gotten around to blogging about Aaron's baptism back in January.  Aaron was baptized at St. Andrew's United Methodist Church on Sunday, January 29th.  We were so pleased to share this celebration with our wonderful church family. 

Our family with Pastor D.A., Laura, and Pastor David

During the baptism, there was a picture of Aaron up on the projection screen.  When Eli saw it, he kept saying, with his booming voice, "Baby Aaron, Baby Aaron."  Everyone was laughing.  After about the fourth time, Pastor D.A. asked Eli for one last clarification of whose picture was on the screen, and in his loud voice, he announced, "My brother, Aaron!"

Aaron Wesley being pronounced a member of God's family

A big thank you to Deanna for taking pictures for us.

Happy Easter!

It's been a while since I've updated.  I really hope to be more on the ball with that now that we're home and settled.  Things are going well here.  We're back into our routine, including school for Clayton, and we're enjoying being a family again.  Clayton is doing well with his recovery.  We are still doing weekly INR checks to try to manage his coumadin, but I think we're getting closer to finding just the right dose and schedule for him.  Hopefully he'll be in the right range this week.  Ryan and I are becoming more and more convinced that Clayton has more energy now than he did before the surgery.  Ryan took him out for a little bike ride around the neighborhood the other day, and he rode the entire way, something he hasn't been able to do before.  His appetite is good, and it looks like he's kicked his afternoon napping habit, which is good for our almost six year old.

We've been celebrating Easter this weekend, remembering the sacrifice on the cross for our sin, and thanking God for his grace.  Our church had a big egg hunt for the kids on Saturday evening, and then we attended the Saturday night service.

I made the boys vests and ties this year.  I actually didn't get started on them until Thursday, which made for two seriously late sewing nights, but it all worked out, and I think the final product was worth it.  I loved the way the vests turned out.  I thought they looked so fresh and ready for spring.  Eli is such a unique little personality, so I thought he'd be cute with a bow tie.

Aaron was our most enthusiastic egg hunter.  This boy knew just what to do, and he was a man on a mission.  He hunted with the babies, again with the toddlers, and again with the kindergarteners.  I couldn't hold him back.

Eli liked hunting for eggs, but we had to keep convincing him to keep hunting.  He's an instant gratification kind of guy, and he wanted to know what was inside each egg right away.

Clayton knew just what to do and had a great time with all his friends.  He was so excited to be wearing a tie.  I'm not sure why, but he loved it. 

Today we had a nice, lazy day around the house.  The kids got a few things in their Easter baskets and we had a little egg hunt in the backyard.  We had our traditional ham and potato dinner with just our little family tonight.  The boys are in bed, and now I'm ready to finish the weekend with a relaxing evening.

Tuesday is Clayton's sixth birthday!  I can't believe he's so old.  We don't have any big birthday plans nailed down yet, but we'll see what we can come up with to celebrate our little man's big day.



Passing the Time

Clayton was discharged from Packard on Thursday afternoon.  Since then, we've just been relaxing and taking it easy.  We have a few appointments on Monday, but those are our only real commitments.

On Friday, after sleeping in, we decided to grab some lunch and head over to the theater to see The Lorax. We had a great time and enjoyed the movie.  It was so nice for us to both take Clayton to a movie.  The little boys haven't been to a movie yet, so if there's something we want Clayton to see, one of us takes him, and one of us stays home with the little ones.

A couple weeks ago, when the little boys were visiting, one of the fire departments came to the McDonald House to make dinner for the families and show their trucks and equipment to the kids.  Ryan took the little boys and mentioned to a couple of the firemen that Clayton was in the hospital.  They told Ryan to bring him by the station when he was discharged, so we gave them a call this morning and headed over to the station. 

Quite a few firemen came out to meet Clayton, and a few of them showed us around.  They were so friendly and seemed to enjoy our visit.  Clayton was in awe and was thrilled to see all their trucks and equipment.  They even had a new recruit demonstrate how quickly he could get suited up.  The visit ended with a real call to the department, so we stood outside the garage and watched them all drive away.  I hope the call wasn't too serious because watching them get in the trucks and drive away was definitely the highlight of the visit for Clayton.

We don't have any real plans for tomorrow.  We'll just see what we feel like doing in the morning.  So far Clayton seems to be feeling well, and he has a lot of energy, so we're really hopeful the fluid is not returning.  I am missing my little boys so much.  I can't wait to get back to them.

We're Out!

Clayton's drainage decreased again Monday through Wednesday, after Sunday's spike.  His x-rays all looked good, so the doctors pulled his last chest tube Wednesday afternoon.  On Thursday morning Clayton's x-ray showed a small amount of fluid accumulation on the right side, but it wasn't too much, so they decided to discharge him to the Ronald McDonald House.  We have to stay close to the hospital through the weekend.  We'll be watching him for any signs of the plueral effusions returning.  On Monday Clayton will have an x-ray to look at the fluid again and a lab draw to check his INR (clotting time) which will help us with his coumadin dosing.  If all that looks good, we plan to fly home on Tuesday.  We have a tenative appointment set with our home cardiologist for Wednesday, and then on Thursday I will meet my mom in Ft. Worth to pick up the little boys.  I can't wait to see them!

I really hope everything goes well through this weekend, and I really hope the x-ray looks okay on Monday.  We are anxious to get back to Oklahoma.

Setback

Clayton saw great progress in decreasing his drainage from his chest tubes last week.  The left chest tube was able to come out on Thursday, and the right chest tube continued to decrease it's output little by little each day.  On Friday the output was about 50mL, and on Saturday, the output was about 30mL, which is the target amount for pulling, so the plan was to pull the last tube on Sunday.

Sunday morning arrived, and sometime between 7 and 9am, the chest tube started to pick up its drainage.  Clayton's team rounded before 10am and decided to get a chest x-ray before pulling the tube, which is protocal, but it was especially wanted seeing as the tube had put out quite a bit of fluid in a two hour time period.  The x-ray showed fluid, and lots of it, all between the lung and its lining on his right side.  By the time we made it back up to Clayton's room from radiology at about 10:30am, the tube had already drained 50mL since 7am.  It continued to drain most of the day and finished out the 24 hour period at 238mL, far from the goal of 30mL. 

There are a few theories.  There may have been a pocket of fluid that became trapped around his lung because the tube wasn't in exactly the right place to drain it.  It's possible that Clayton twisted in just the right way Sunday morning to open up that pocket, allowing the fluid to drain down into the tube.  It is also possible that the tube had become clogged at the tip and wasn't letting fluid drain properly through it, thus looking like it was decreasing, while it was really just building in the chest cavity.  Either way, for some reason, there was a lot of fluid trapped up there, and now it's on its way down.

I had, of course, gotten my hopes up for getting out of the hospital on Monday (today), but that obviously didn't happen, and probably won't happen for a while now.  It's definitely depressing.  We miss Eli and Aaron so much, and I want us to all sleep in our own beds in our own home.  If you've ever slept on these McDonald House beds, you know why.  There's only so much a back can take.

We are thankful the fluid was found before the tube was removed; otherwise, the tube would have had to have been replaced, and that's a pretty traumatic procedure, so that's one positive.  We're also grateful that Clayton didn't show any signs of distress with all that fluid trapped up there.  He was never in any pain, never had any desats, and didn't have any trouble breathing.  I'm also grateful that Clayton has turned into a complete tv vegetable because there is little else to do while hospitalized, and tv keeps him pretty happy.  He'll definitely be in withdrawl when we get home.

Thanks for your prayers for our family.  It's been a disappointing couple days, but at least Clayton's okay.

One Down

The left chest tube came out yesterday afternoon!  So far, so good.

Last Week's Pictures

The little boys were here Feb. 22-29th.  Clayton really enjoyed seeing them.  This picture was taken just hours before the dreaded stomach virus hit Aaron.  I can't believe Clayton never got it.

A family shot.

Headed out for a wagon ride.

We try to keep Clayton out of bed as much as possible during the day.  We have this little couch/bed in his room where he works on all his "jobs", AKA coloring, and has a lot of his meals.

Meds with breakfast.

A friend stopped by with a breakfast treat for Clayton.

Mail time!  So excited I couldn't get a single shot in which you can see his entire face.  He kept waving these back and forth in the air.

Showing off the gear.  Leads, of course, with two chest tubes and a PICC.  Not too bad.

Asleep with Boco.  Can't sleep without him.