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.

Time for an Update

No news really just means there's no news.  Clayton is still draining from his two chest tubes, and that's the big story.  This surgery changed a lot about his circulatory system, and this is a known complication.  Luckily, he's really adapted well to being in the hospital, and he's happy most of the time.  While most adults lay still when they have chest tubes, kids get on with life.  I have to remind Clayton a million times a day to stay near his chest tube boxes.  I can't believe he hasn't pulled one of them out yet.  He's on the go constantly.  He's never been a fast mover, but even a slow mover is hard to keep up with 100% of the time when they've got a three foot leash.  The chest tubes are the originals from surgery, and as the skin tries to heal around those tubes, the stitches tend to come loose, and they are prone to falling out.  I'm really hoping they stay in until we're done with them.

The drainage has been decreasing very slightly the last few days.  The right tube has always done the bulk of the draining, and its drainage is still significant, between 120 and 200mL (about 4 to 7 oz.) a day.  The left tube, however, has been looking good the last couple days.  It's been around 30 to 40mL (about an ounce), so they are considering pulling that tube today.  I'll keep you posted.  Getting these things out is definitely no fun, but it's progress in the right direction, so with a little morphine, I really hope it will go okay.

Staying busy is, of course, our biggest challenge.  So many people have sent little goodies for Clayton, and the newness of them all is really great for Clayton.  The doctors keep asking about his spirits, and I tell them honestly that he's doing great, it's Ryan and I that are bored stiff.  I'm very blessed that Clayton is my kid that is easy to entertain.  If you hand that boy five Matchbox cars, he's good for an hour.  No one loves to watch movies more than Clayton.  We don't allow the boys to watch much tv at home, but I've let him watch movie after movie here, and he loves it.  It really does help pass the time.  They have a really large selection of on-demand movies that mostly somewhat current and popular, including many Disney and Pixar films.  We also have lots of paper, crayons, markers, etc. to help pass the time.

The playroom.  Oh, the playroom.  It's open 2 to 4pm everyday and 6:30 to 8pm Monday-Thursday, which is pretty limited hours.  It's small and cramped, but for some reason, Clayton loves it.  I don't know why.  He usually heads straight for their bucket of cars.  We have about 20 Matchbox in our room, but there's something about their cars he loves.  They ususally have some kind of a craft, but as with most crafts, they're usually more girly, and he's usually not interested in that.  I'm sooo bored there, but he enjoys it, so I really make an effort to get him there every time it's open.  Last night they made Flubber, which was actually fun for boys too, so that was refreshing.

I've been getting some reading done, and Ryan's chipping away it ACSC, so I guess that's good.  We're pretty ready to get home.  It feels like we don't see each other all that much, as Ryan stays at the hospital at night, and I stay at the Ronald McDonald House.  Then we try to give each other generous breaks during the day to get business done, rest, and get a little sunshine.  Hopefully the left chest tube will come out in the next day or two, and then we'll just be waiting for the right to dwindle down as well.

We appreciate all the support and everyone who is helping take care of our kids and things back home.

Day 11

When we were in Clayton's pre-op meeting with the surgeon's PA, he told us some Fontans get lucky and get out of the hospital in 7 to 10 days, but most kids spend at least 2 to 3 weeks in the hospital, if not more. Now that we're on post-op day 11, I think I've accepted the fact that Clayton will not be one of the lucky ones, and we're going to be here a while. Good thing I fully unpacked my suitcase the day we moved into the Ronald McDonald House. I knew it wasn't going to be a quick stay, and I'd be much more depressed about unpacking if I were doing it now.


Today was a medically uneventful day for Clayton, which is always a blessing. Ryan, like a knight in shining armor, spends every night at the hospital with Clayton so that I can come back to RMH, sleep in a bed, and come back showered, blow dried, and half way decent looking each day. It just makes the whole experience a little more bearable. Anyway, last night Clayton had some bad dreams, and our roommate had a lot alarms, so Ryan didn't get much rest. Mom and I were planning on taking the little boys to San Jose, so Pop was on call to sit with Clayton the greater part of today, and I must say, Pop is kind of a slave driver.

The day started off with another visit from Carly, the pet therapy golden retriever. She even got in bed with Clayton today! He was in heaven, and Carly is definitely the best part of LPCH for Clayton. A little later, Pop had been misinformed about the preschool schedule for the day, so after hiking all the way over there, Pop conducted his own preschool, which included books and educational games on the iPad. Then there was a hike back to bed for lunch. Then they went to the playroom at 2:30 and stayed until it closed at 4pm. Clayton came back for a good snooze, and then had dinner. Then he had to go back to the playroom for evening hours because it was pet night, and he was excited to see all the dogs. I came up after all the outtings, and Clayton was pretty exhausted. It was definitely one of his better days. No pokes, no dressing changes, no torture.

Mom and I took the little boys to the Children's Discovery Museum in San Jose. Let's just say it was an interesting trip. Don't you know the one time in my life I failed to pack spare clothes for the children, they both really could have used them! One child was naked, wearing only a pair of Converse, by the time we made it back to Mom and Dad's hotel. I can't even put into words how many things went wrong. Oh well. We all survived.

Mom and Dad leave with the boys tomorrow afternoon. I've really enjoyed spending some time with my munchkins, and I will miss them soooo much, but having them here for just a week has really shown me that it is not possible to have them here full time. Hopefully this won't drag on too much longer, and then we can all be back together again in Hokahoma City, Hokahoma, as Eli calls it.