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.

Wednesday, February 15, 2012

Pictures from Our Travels

On Sunday, the captain of our flight to Phoenix invited Clayton to sit up front for a few minutes after the flight.  Clayton was in heaven.

We spent Monday morning strolling through Golden Gate Park.  It was a very chilly, wet day, but we had a lot of fun. 

The Dutch Windmill in the Queen Wilhelmenia tulip garden.

The tulips weren't out yet, but everything else was gorgeous.

At the Beach Chalet on the west side of the park.  Clayton got a real kick out of this mural.

Clayton has been requesting a trip to the beach for years.  We tried to prep him for the fact that this would be a very cold beach with no swimming, so I hope he wasn't too disappointed.  It was so cold and windy when we arrived.  We parked, ran out on the sand, snapped a couple pictures, and ran back to our car.  Then we ate our picnic in the car with all the windows rolled up.  I know it wasn't his ultimate trip to the beach, but at least the waves were really cool that day, and now he can say he's seen the Pacific Ocean.

If you look closely, above the rock closest to the Cliff House building, there's a C-5 in the air.  That C-5 went round and round over the Golden Gate bridge.  I'm not sure what that was all about.

That night we ate at Bubba Gumps.  Yum.

Then we headed over to Ghiradelli's for dessert.  We obviously split this bad boy three ways.

Clayton got the first bite.  He was pretty enthusiastic about getting his fair share.

Today we traveled all over the bay area, stopping at more of our favorite places, but that will have to be a post for tomorrow.

Tuesday, February 14, 2012

Back to California

We're finally here.  When Clayton was born we assumed he would have his Fontan completion surgery sometime between ages 2 and 4.  Now that he's nearly 6, it's finally time.  Clayton's pre-op date is Thursday, and his surgery is scheduled for Friday, so we have a few days to enjoy some one-on-one time with our little man before we get going with things.

We flew out Sunday afternoon.  For the first time in almost six years I boarded an airplane without a single diaper, wipe, or sippy cup.  It was glorious.  I also read and read and read while Clayton watched a movie and colored.  Again, glorious.  No one cried.  No one demanded to get off the plane in mid air.

We arrived in San Jose, picked up our rental car, and headed up to Palo Alto.  If you've ever been here, you'll know it's a very pricey place.  Our somewhat affordable hotel left much to be desired, but it was clean and in a good neighborhood.  We were on the waiting list for the Ronald McDonald House, so we headed over there this morning to peek in and let them know how much we would appreciate a room.  Lucky for us, one of our old house friends was working this morning, and somehow, magically, we could check into a room at 3pm. 

We celebrated by heading up to San Francisco to visit a few of the sites.  It was pretty cold and rainy today, but we braved the weather and strolled through Golden Gate Park, an old favorite place of mine.  Then we stopped at the beach for lunch before taking a little scenic drive along the city's coastline, around to the Golden Gate, and through the Presidio.  I loved being back in the city and showing Clayton some of the places I love.

We headed back to Palo Alto to check into our room and almost immediately turned around and headed back into the city.  We have way too much to see in a short few days.  We spent the evening at Pier 39, had dinner at Bubba Gumps, and then headed over to Ghirardelli Square for dessert.  Yummy!

There will be pictures tomorrow, hopefully, because I left my camera in the car, and I'm too settled to go down and get it tonight.  Thanks for all your prayers.  We're having a great time enjoying our little man for these few days.  He knows he has a surgery in a few days, and he's nervous about it, but he doesn't fully comprehend what it really means, so he hasn't let it damper his mood in any way.  For now, he's just enjoying life as an only child.