Wednesday, May 23, 2012

Last Day of Pre-K

Today was Clayton's last day of Pre-K.  We will miss Mrs. Kirk and Mrs. Koepke soooo much.  It was a great year, and now he's ready for kindergarten.

Aaron Wesley


Today I officially realized that Aaron is no longer a baby.  Today alone, Aaron has drawn all over the glass panes of our office door with (washable) marker, painted on the front of the dryer with (washable) watercolors, played in the potty twice, unrolled a full roll of toilet paper, and it's only 6:30pm.  Apparently I need to step up my game a little.  I will say that neither Clayton or Eli has ever played in the potty.  They probably unrolled the toilet paper less than 5 times between the two of them, and Clayton colored on my pantry door once.  Aaron has practically met their combined record in one day.  I'm foreseeing a lot of "correction" in his future.

Also, a big thanks to the Wal-Mart greeter the other day, who insisted the boys have a free cookie and then handed them chocolate covered cookies on a hot day.  Luckily, very little cookie ended up on his shirt and the carseat.  Most of it was left on his face.

Monday, May 21, 2012

Clayton's Pre-K Celebration

The quality of these pictures is definitely lacking, but at least I remembered the camera this time.  Clayton had his Pre-K Celebration last Thursday night.  They had a very cute program.  It was a little overview of some of the fundamentals they've learned this year.  I was so impressed.  The kids did so well with their lines, and I think the partner dance was the highlight of the show.  They even performed the dance for the whole school the next morning.

Clayton's teacher has been such a blessing to us this year.  She's been so supportive of all his needs.  We could not have asked for a better start to school.

Climbing the stage stairs made for a rough start.  Clayton's arthritis has been really bad this week, but he eventually got up there.

All seated and ready.

Clayton's big line was, "A rainbow of colors," which he shouted into the microphone with as much gusto as I've ever seen from him.

Color parade.

Receiving his binder of work from Mrs. Kirk.

Cheese face.

Posing for a picture with his dance partner and good friend.

Clayton and his "girlfriend".  They are too funny, and yes, she's a full head taller than him.  They have a sweet little friendship.

Wednesday, May 16, 2012

Oh Aaron!

You are trouble.  This is about 100 diapers I had just loaded into the diaper stacker.  Apparently he was quite busy before he fell asleep.

Downtown

Ryan's sister, Kristin, came for a weekend visit a couple weeks ago.  We had such a great time catching up and having fun.  On Friday afternoon Kristin and I took the kids down to Myriad Gardens to check out the renovations.  We took a little Chick-fil-A and ate by one of the new fountains.  There were a few other kids down there, and while it was a bit chilly, they were playing in the fountain, and soon, my boys were too.  Thanks to Aunt Kristin for taking some cute pictures for us.




We'll definitely be back a lot this summer. 

Cross Point Camp

Over Mother's Day weekend, we were so blessed to be invited to join a large group of our church friends down at Cross Point Camp on Lake Texoma for a weekend of family, fellowship, and relaxing.  We drove down in the rain Friday night.  We had our own little cabin with four sets of bunkbeds and a large bathroom.  The camp had a dining hall where our meals were provided. 

On Saturday, we spent the very chilly, drizzly morning on one of the beaches.  The kids mostly played in the sand, as it was a little cold for swimming, and by lunch, they were so dirty, they required a shower before we could take them into the dining hall.  After lunch, the boys napped for over three hours.  In the meantime, the weather had greatly improved, and I headed down to the beach with some friends for a relaxing afternoon in my camp chair with my Kindle and a Diet Coke.  After dinner, we took the boys back down to the beach so they could enjoy a quick swim before the evening bonfire, where we had a great time with friends and s'mores. 

After breakfast on Sunday morning, we met at an overlook and had a church service together.  Then it was time to hit the road for home.  Eli was distraught that we were leaving.  I think he thought we'd just live there forever.  He keeps asking when we can go back.

Ryan and I are beginning to get the feeling that our days in Oklahoma could be numbered.  We've been here nearly five years, as long as I've lived anywhere in my life, and we might be approaching time to move.  While I usually enjoy moving, seeing new things, and meeting new people, leaving this church family will be very difficult.  We'll see what the future holds.

 Clayton

Eli

Aaron

The little boys were obsessed with trying to fill this tire up with sand.

Eli loved the water.  It was so cold, but he was determined to get in.

Our campfire with friends.  There were about 75 of us there, a really great group.

Clayton's s'more.

Cheese!  The big boys loved wearing these headlamps.  They can also switch to a red light which was very handy for keeping track of them after dark.

Happy camper.

At the cross.  The lake was beautiful on Sunday morning.

All the kids.  It was quite a bunch.  I love that the older kids take such good care of the little ones when we're all together.  They're such a great example to my boys.

Wednesday, April 18, 2012

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.

Sunday, April 8, 2012

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.



Sunday, March 18, 2012

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.

Friday, March 16, 2012

We're Out!

video

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.

Tuesday, March 13, 2012

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.

Friday, March 9, 2012

One Down

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

Thursday, March 8, 2012

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.

Wednesday, February 29, 2012

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.

Monday, February 27, 2012

Into Week 2

We're now starting week two here at Stanford.  Clayton has done really well recovering from surgery, but, as with many Fontans, chest drainage has become the main issue.  Last week the drainage had been on a slow but steady decrease; however, it has been increasing over the last few days.  Because Clayton is losing so much fluid from his chest, he's needing some replacement fluids and albumin infusions.  This has necessitated IV access, which has been difficult to maintain.  Last night it was decided that he was definitely in need of a PICC (peripherally inserted central catheter), which is a very long IV that is threaded through his arm, all the way into a major vessel leading into the superior vena cava.  These lines are supposed to last a long time (sometimes up to months), and they are hardier, meaning you can infuse things that tend to burn up tiny veins. 

So, unfortunately small children require anesthesia for the procedure, and in order to receive the anesthesia they wanted, Clayton needed a working IV.  Three different people came in to try throughout last night with zero success.  At about noon Clayton was moved to the CVICU for the procedure.  The PICC team was able to place an IV, give the necessary anesthesia, place the PICC, and remove the new IV.  Then Clayton was transferred back up to 3 West.  I'm sad it took so much poking for people to realize Clayton needed a PICC, but it's over and done with, and now we're moving on.  Hopefully this line will last for a while.  Please pray this line doesn't become infected.  We've never escaped an open heart surgery without a central line infection, and they can turn really ugly, really fast, so we really, really want this line to stay clean.

As for Clayton's drainage, now that they're infusing some replacement fluids, it's not unheard of for the drainage to increase.  The drainage is coming from his vascular system, and the more you pump in, the more you'll probably leak out, but they don't want him to become depleted on different vitamins, nutrients, and minerals of the blood, so he must be infused.  Drainage after Fontan follows no real pattern.  Some kids have it, some don't.  Sometimes it lasts for a few days, sometimes several months, and there's no real agreed upon way to treat it.  Waiting it out is the only thing we can really do.

We'll just have to wait and see how long this process takes.  So far the fluid has been clear (no chylothorax, PRAISE THE LORD), but that can rear its ugly head anytime, so pray for Clayton to stay chylo-free please.  Also, Clayton has chest tubes, multiple healing scars and scabs, as well as the PICC.  We're praying he can stay infection free.  For some reason, hospitals are dirty places with all kinds of nasty bugs that are easy to catch.  Please continue to pray for his health.

Sunday, February 26, 2012

Still Here

It's been several days since I've made a little time for this blog.  Since I last updated not too much has changed.  Clayton is still on 3 West, but he's no longer on Intermediate Care status, which basically means his nurse can have more than two patients.  With the change, we had to move rooms, and unfortunately, we're in a much smaller, very dark space with a baby whose monitors alarm constantly.  It hasn't been great, but we don't have much choice, so we have to make the best of the situation. 

Clayton is getting out of bed more and more each day.  He's doing a little walking with some assistance, but he's most fond of driving a Lightening McQueen push car around the unit.  We try to make that a daily event.  I'm now able to move him around without any assistance from the nurse, which makes getting out and about a little easier.  The hospital is built around a center courtyard, and once you get out of the units, the interior wall is glass and looks out over several beautifully manicured balconies, and the gorgeous courtyard.  We can't leave the third floor, or go outside these days due to hospital construction, but it's still a beautiful view, and it's California, so there's plenty of sunshine coming through those windows.

We try as much as possible to get all the unpleasant things of the day accomplished in the mornings.  That includes blood draws, x-rays, dressing changes, etc.  Then we're trying to get him up as much as possible.  He usually takes a nap in the early afternoon, and we try to get him into the playroom at least once a day.  They're open from 2 to 4pm and 6:30 to 8pm most days.  Today he and my dad were able to spend a good part of the afternoon playing the Wii in there, and I know Clayton was in heaven. 

As for issues, Clayton's chest tubes continue to drain quite a bit of fluid.  Chest tube drainage after a Fontan is a known problem.  Most kids deal with it.  It's extremely unpredictable.  Sometimes it stops suddenly, sometimes it slows down over time.  Sometimes it stops and then starts again in the future, requiring the placement of new chest tubes.  Clayton's fluid is still significant.  He drains a lot of protein and electrolytes from his blood into this fluid as well.  We haven't had much trouble with the electrolytes, but his albumin (a blood protein) levels have been very low, necessitating albumin infusions, which have required a well functioning IV, which has been another issue. 

Our newest problem has been coumadin.  Clayton started on coumadin about five days ago.  It takes a while to find a good dosing amount and schedule and it's pretty unpredictable in kids with significant chest tube drainage.  Well, this morning his INR was 5.  They would like to keep it between 1.5 and 2.0, so this was a shock and can be very dangerous.  They ordered an echo to make sure there wasn't any bleeding from his heart.  His nose has been bleeding just slightly most of the day.  They decided not to change the dressings on his chest tubes because he's kind of a trasher, and they were concerned one might become dislodged, and he would have a bleeding emergency.  And, of course, they stopped his coumadin, aspirin, and motrin, which all have blood thinning properties.  It will probably take a few days for his INR to drop back down into the range they want, and until his chest tube output decreases significantly, they probably will not restart the coumadin. 

Ryan and I were talking tonight about recovery from these surgeries.  It seems like in our cases, the heart is rarely the hold up in our kids' recoveries.  It's always something else.  It's chest tubes, or kidneys, or INRs, or infection, or so many other things.  Right now we're really just in a holding pattern, waiting for this drainage to stop and trying to manage all the little complications it causes.  We appreciate your prayers.

Tuesday, February 21, 2012

A Few Pictures

Getting some chocolate milk Sunday morning

Being stubborn about the nasal canula Sunday night

First time out of bed, moving from the CVICU to 3 West today.  This was taken just after a very tough IJ central line pull.  It wasn't pretty and no one was very happy.

Finally getting a good nap up on 3W

Had a couple mandarin oranges this morning, but other than that he hadn't eaten anything solid.  He woke up from his nap this evening wanting a hotdog and grapes.

Off to a great start tonight.  Hope he can stay this way.

Monday, February 20, 2012

Day 2 Post-Op

Clayton, dare I say it, is doing pretty well.  Less than an hour after I typed my last blog entry, Ryan was calling me to get back up to the hospital because they were going to extubate Clayton.  Apparently he had grown so agitated and was thrashing around so much, they had one of two choices, 1) extubate and hope he makes it, or 2) fully sedate him and then have to wean him off that sedation later for extubation.  The choice was made, and Clayton was extubated around 6am.  He immediately asked for orange juice (of all things, he's not really a big OJ drinker), and that was denied.  For six long hours, we had to hold this boy off of fluids, and I think it took every ounce of energy either of us had.  He was desperate and angry.  When he finally had a little water, he announced he was done with water and wanted breakfast.  That was not an option for yesterday.  It was a long day trying to balance pain and agitation management.  He went through cycles of sleeping for about 30 minutes, and then thrashing around, attempting to pull every line out and even attempting to crawl out of bed for 30 minutes.  Then literally mid-thrash he would pass out with exhaustion and sleep another 30 minutes or so.

Last night was much better.  He was probably too exhausted to carry on his routine.  Ryan said his big craving all night was milk, which he was permitted to have.  Ryan said he was mostly restful and in a good mood.  Of course the minute I showed up this morning, that all changed.

After Ryan left, Clayton became severely agitated, much like the day before.  He was really irritated mostly by his nasal cannula and his Foley catheter, the one for urine (ouch!).  I pleaded with the nurse to ask during morning rounds if the Foley could possibly be removed.  After much discussion, it was agreed it would come out around noon.  The transformation was remarkable.  Clayton went from thrashing, spitting, and attempting to bite me to a calm, somewhat relaxed little boy.  He even, very patiently, had his common atrial line (catheter inserted through his incision into his heart) removed without any extra sedation.  He's been really good ever since.  He rested on and off pretty peacefully all afternoon and evening. He was permitted solid food today, but he hasn't had any interest.  The only "food" he ate today was a few bites of ice cream.  He did however, drink all day long. He watched portions of a couple movies, played with Legos from Miss Amanda, and even colored a little with some of the supplies his classmates sent.  I even saw a smile when I brought in Boco, his beloved, very large, giraffe tonight. 

Medically, Clayton is doing very, very well.  I'm very pleasantly surprised.  I would have never imagined he'd do so well so quickly.  My CVICU experiences are extremely skewed. Today the common atrial line was removed, which is a big prerequisite for getting out of bed, and his Foley was removed, thank goodness!  Tonight his milrinone, his last drip for heart function, was turned off.  If he does well with that overnight, there is talk of removing the central line in his neck tomorrow.  I would be thrilled, as I can't think of one surgery that our kids have had that didn't result in a central line infection, which is a real bummer.  If the central line comes out, the arterial line in his wrist will also most likely come out, which is a mixed blessing.  It's positive in that it's a step towards getting out of the CVICU, but it's a negative in that he'll have to have needle sticks for blood draws for the remainder of the hospital stay, and these people really like to look at blood, often.  There is also talk of Clayton possibly moving out of the CVICU tomorrow as well.  That would be a big step in the right direction. 

All in all, good news!  I hope to put up some pictures of Clayton tomorrow.  With Ryan and I switching off shifts, the camera never seems to be in the right place, and honestly, he's been so miserable we haven't taken too many pictures anyway.  Hopefully tomorrow will be a good day.

Clayton's kidneys are improving gradually, but his chest tubes are still draining quite a bit of fluid, so if all continues to go well, the chest tubes will be the deciding factor in when Clayton will be discharged.  Clayton will also be coming home on coumadin, which he will start in the next couple days.  We will have to get all that worked out as well and learn the ins and outs of coumadin management.  We hope that will not be permanent, but we'll just have to wait and see.

Saturday, February 18, 2012

First Night

Dr. Hanley came out around 5:30pm to tell us everything had gone as expected and that Clayton would be transferred into the CVICU within the hour.  We were able to see him around 6:30pm.  He looked pretty ragged, but was doing very well.  Soon after though, he started to develop some problems with some of his blood gases, which has postponed extubation for now.  He's lost a lot of fluid, so they're giving him more and more of that in an effort to bring down up his pH.  They also had to start a milrinone drip to help his vascular system relax a little and improve circulation to his extremities.  He's doing okay at the moment, but is not ready for extubation yet.  They're trying to keep him comfortable but not completely sedated so that when his blood gases improve, he'll be able to wake up for extubation.  He's had a couple episodes of flinging his arms around, coughing, and crying, but those have been quickly managed with a little pain medicine.  It's pretty heart wrenching though to see him try to mouth words around the breathing tube.  Ryan and I took turns resting a little tonight, and now I'm back at the House trying to get a couple hours rest before heading up there again.  Then Ryan will return to the House to try to get himself more on a night schedule so that Clayton isn't ever alone.  It was a rough day.  It hasn't been perfect, but things are okay.

Friday, February 17, 2012

Surgery Day

After several delays, Clayton headed back to the OR around 11am this morning.  At about 1pm we met with Dr. Hanley who said the anesthesia part was just about complete and that he would be heading into the OR soon to start with the surgery.  He hopes to be done around 4pm, but it will probably be later this evening before we can see him.  It takes a while to get him transferred and settled into the CVICU.  Thanks for all your prayers today.  We're hoping things go as smoothly as possible for Clayton.

Around the Bay in a Day

Ryan and I have been busy soaking in some good times with Clayton the last few days.  In addition to seeing an ocean, before we came, Clayton had also requested to ride a boat in the ocean, so on Tuesday we made that happen.  We headed back to the piers in San Francisco and took a bay cruise, something we'd never done before.  The cruise was mainly around the bay, but we did pass under the Golden Gate, so we were technically in the ocean for a few minutes.  Check, check.  Clayton was excited for about the first ten minutes.  Then it was pretty much ho-hum after that, but Ryan and I really enjoyed it.  We had an audio headset that narrated a lot of the history of the area, and we both learned a lot.  Clayton was so enthusiastic, that he fell asleep, which just meant Ryan and I could pay more attention to the narration.  It was a win for everyone.








Clayton was no match for the gentle rocking of the boat.

After our little cruise, we headed up to Muir Woods, again, another first for us.  We'd always driven through a tiny little piece of redwood forest on our Hwy 1 drives, but we'd never actually stopped to hike, and I use the term "hike" loosely.  It was really more of a fully paved path or boardwalk stroll, which was good for Clayton.  His energy is really low, and he really does need a stroller for anything longer than a parking lot.




Again, Clayton was no match for the gentle vibration of riding in a stroller over a boardwalk.

Then we set out for Napa, and, as usual, we underestimated the driving time, so we made it up to V. Sattui just as they were closing.  Ryan was able to secure a couple bottles of wine, just in time. 



The grounds are gorgeous.

Napa is pretty close to our old home of Fairfield, so we drove over to see our old house, the house Clayton came home to from Stanford as a baby.  I loved that house and still miss it.  It was a great little place Ryan and I lucked into renting just before Colin passed away.  We have a lot of memories in that house, both good and sad, and it will always be Clayton's first home. 

After a little bite to eat, we headed back through the east bay to Palo Alto.  It was a busy, busy day, but it has been so great to spend some special one-on-one time with Clayton.