Journal

Journal entry by Sara Mason

We busted out!  But shhhh.  They waffled on it all morning so I'm afraid to draw attention back to him.  

After five days of great care, Ander looked one thousand times better than when he arrived.  We discovered that he had something called adenovirus.  It's no biggie, unless you have a cardiac condition.  Most kids actually have at least one adenovirus infection by the time they're 10, usually with mild symptoms.  In Ander's case it was a beast.  Our hospital stay was longer than normal for dehydration because they have to give half the amount of fluid they normally would so it wouldn't stress his heart.  Because he doesn't want to drink anything and because he's still having "tummy troubles," the lesser amount of IV fluid was never able to get him out of the red.  But sitting around in a hospital for almost a week is proper torture for a four-year-old.  We knew if he was home he would likely eat and drink more and be a heck of a lot happier.  We promised we would push water like it was our job and they finally agreed to let us go.  Whew.

Austin and I got a bit of a reality check with this one.  We've always prided ourselves on not treating Ander differently because of his heart condition.  We're germ conscious because I'm terrified of public restrooms, but we've never been crazy about germs or avoided public situations for fear of them being extra dangerous for Ander.  Five days because of one little virus is a mere one day less than his hospital stay for one of his heart surgeries.  That said, I can't say we'll suddenly become crazy careful or do much anything differently in the future.  There's a fine line between protecting your child and creating an environment of fear.  Like all things in parenting, it's something that we'll have to figure out as we go.

But for now, it's a rainy weekend and we are looking forward to a whole lot of snuggling and football watching.  Missing out on watching the Superbowl (okay, Superbowl commercials) on the 75 inch TV is perhaps the only thing we'll miss about not staying longer!
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Journal entry by Sara Mason

Uffda.  Another hospital stay.  Ander has got a bug and it's a doozy.  He's been feeling not like himself with a cold and general lethargy for about a week and a half to two weeks.  We've been considering ourselves lucky up until this point because no one has had as much of a sniffle. 

I kept him home from school last Tuesday but he seemed to be better until Sunday.  He swore he was well enough to go to a birthday party, but once we got there he bounced for about a minute and then everything seemed to go downhill.  He rested at home, but for the second time that day he started to have labored breathing, fast and shallow.  It was too similar to what we had seen this summer when it looked like flu-like symptoms but ended up being a partially collapsed lung. 

I took him to the ER and they did a chest x-ray to make sure all was well with his heart and lungs.  Everything looked great.  He also tested negative for the flu.  They said it must just be another viral infection and to keep an eye on it.  His breathing was back to normal and he was looking better so we headed back home.

He started throwing up that night and we hoped it would just pass.  By Monday night through Tuesday morning he was throwing up every 45 minutes to an hour.  If his head wasn't in a bowl he was sleeping.  He finally woke for longer than 10 minutes during those 48 hours and asked to take a shower.  I thought that was a good sign, but he could barely stand.  I sat him down in the shower and while I was switching out the (endless) laundry I heard him yell for me.  He had stood and was crying because he thought he was going to fall over.  I googled dehydration and he ticked all the boxes.  After speaking with a nurse and doing a phone evaluation, he said to bring him in within the hour.   

We drove back to the ER and after more x-rays (again, all clear, thankfully) they admitted us not long after.  He's been on a slow IV drip since.

We're still not sure what's causing all of this and he just can't seem to shake it.  His fever will spike at 103 and then drop to normal after taking medicine only to climb back up.  His electrolytes are out of whack.  His kidney function is trending down (because of the dehydration) when it should be getting better with the IV, but because he still has such diarrhea and isn't wanting to drink much it's not improving.  And the poor kid hasn't eaten more than about 75 calories since Saturday.  This morning I considered it a tiny win because he ate a grape.  

They're running test after test but for some reason they all seem to take FOREVER to come back.  We know we're here another night.  He actually seemed worse this morning than yesterday.  Yesterday we saw our first smiles and he was able to stay away until late afternoon.  This morning he was whimpering and asleep by 9:00.  It's now almost 11:30 and he's still snoring away.

A list of the positives:
(1) We're still in San Diego so we still get to be together (yea to Chipotle hospital room family dinner!) and Austin can switch off with me in the afternoons.
(2) We have super amazing friends in the neighborhood who haven't minded taking Coral to school (even if it means dropping her at 6:45 in the morning so Austin doesn't have to miss work), picking her up, and arranging playdates.
(3) We get to explore a new hospital.  We're at the super beautiful new Kaiser hospital that specializes in pediatrics, birthing, and NICU and it's only 25 minutes from our door if we leave outside of peak traffic times.  One thing to note is the 75 inch television screen that is both impressive and such an absurdity.
(4) We've had only amazing doctors, nurses, and staff (as long as I don't mention the extreme anger I felt having to wait behind eight people in a line just to be checked in to the ER while holding the dead weight of a 37-pound scalding child for 10-15 minutes.  Thankfully we got a room right away after they checked him).
(5) Since I'm not working this year, this is the best time for things like this to happen.  Side note to the world: I'm NOT ASKING for more of this just because it happens to be more convenient!!!!!

Hopefully we'll get some answers and he'll be on the mend and home soon!

Journal entry by Sara Mason

Home!  Home, home, home!  We made it!  

We arrived home around 5:00 p.m to beautiful decorations and a beautiful welcoming committee of Coral, Grandma Lori, and some neighborhood friends.  Within minutes Ander was back to riding in his car, the bigger version of his adored remote control car.  Of course, within the hour he ran over the remote of his little car with his big car so it no longer works.  And we knew then that things were headed back to normal.  ;-)

The next few days will be getting used to things again (ex: I don't know what Coral's teachers look like) and figuring out how to fit Ander's new meds schedule into the much busier day-to-day.  We'll also spend some quality time with Grandma Lori before she flies back to Oregon.  Coral got in a lot of great one-on-one time with her and Ander is eager to see her as well.  We appreciated all her help while we were gone! 

Ander's summer of 2018 will be one to remember.  Here's a bit of a review in numbers:
100 - smiles and eye rolls when nurses would say how cute he was
42 - days in the hospital 
40 - X-rays (anyone know of a way to detox all that radiation?)
33.5 - pounds.  We need to fatten him back up!
15.2 - kilos.  In case you're curious.
14 - doses of medicine currently per day
13 - days we were home before we went to Rady's
7 - days of no food or water by mouth (i.e - hell)
5 - chest tubes
3 - of those chest tubes obsessively monitored for drainage
2 - caths
2 - open heart surgeries
1 - ambulance ride
1 - helicopter ride
1- daring escape through a wildfire (one swept onto our VRBO property in Oregon)
1 - hella brave little boy

Then there are the things that we couldn't count: the kind and thoughtful cards, drawings (we decorated Ander's room with them all!), toys, gift cards, dinners, playdates, rides to and from school, texts, messages, calls and visits.  We absolutely cannot put into words how much it has meant to us to have so many people we love (and those we don't even know!) praying for and supporting Ander and our entire family through all of this.  From the bottom of our three-and-a-half perfectly imperfect hearts, we thank you.

It is good to be HOME!!!

XOXO,
The Masons

Journal entry by Sara Mason

Exciting things are happening around here.  We got a clear X-ray!  Hallelujah!  No more fluid!  We also switched things up and have had great success giving Ander his meds in chocolate sauce.  He may not have any teeth down the road, but his heart will be functioning well!  He also had his stitches removed from his chest tube incisions.  He got so upset he broke out in hives, but again, one less thing.  It's hard for a four-year-old to see the big picture.  Instead, he was rewarded with an episode of Paw Patrol

Austin is staying over again tonight rather than heading back for home because...there has been talk.  I will believe it when I see it, but (insert Jim Carrey voice) they're sayin' there's a chance!

Pics:
Dog visits - they are plentiful!  Nearly every day we get to play with a sweet pup.  The only downside is that Ander isn't really a dog lover (Shh.  Don't tell the nice volunteers).  Here he never actually pet little Scout (who has a gray patch in the shape of a heart on her back!), but instead noticed she wanted his toys.  He routinely asks us when we're getting rid of Moshi so we can get a cat.  I'd imagine cats aren't as easy to train, but perhaps someone with a bunny or a chinchilla would like to pop by?  
Magnatile dragon
Cheers-ing lollies 
The entourage, which would be decidedly cooler if we could put wigs on the monitors. 

Journal entry by Sara Mason

Not much to report.  Fluid is the same, perhaps slightly less?  It's negligible if so.  Still waiting on the ultrasound results.  The encouraging news is that he is eating more and it hasn't increased, so we'll hold on to that as good news!  

We had a pretty calm, easy day (with the exception of his PICC line change again - yikes).  We asked if Ander could go outside again (now that we know it's allowed if your nurse is okay with making the trek) and he did better and got in a great walk.  We decided to forgo staying at Ronald McDonald house because the last shuttle leaves at 9:00 at night, and that's pretty much the only time Austin and I have to talk to one another once Ander is asleep.  It also saves us $50 a weekend which we realized we were mainly paying so I had access to laundry.  But apparently they have day passes for just that reason!  I was able to leave for a little under two hours and sit outside and read my book while our clothes were cleaned.  Bliss!

That's really the highlights - outdoors and laundry.  Thrilling, yes?  ;-)

Pics:
More bubble blowing to help pop those lungs back.  Mama is upping her skills at large bubble blowing.
Outside in the play area!
Nom noming on our delicious dinner from Lemonade.  Thank you, friends!  

Journal entry by Sara Mason

It's the weekend!  With that I can usually count on two things: Austin will be here and the hospital will seem to shut down.

Austin drove up this afternoon and is currently camping on the floor.  Unlike in the ICU where all the crazy equipment hogs the room, there's room in CV Acute to split the two mattress that make up the sofa/bed so we don't have to share one twin.  This is good for our marriage since Austin is not a small man and it was definitely not a 50/50 split of sleep space.  

Ander's X-ray this morning showed a bit more fluid than yesterday.  Since his body seems to want to win blue ribbons for clotting they're trying to rule that out as a factor to why he may be having this fluid accumulation.  A clot would increase pressure and cause the effusion.  They ordered an echo (ultrasound of the heart) and an ultrasound of his neck and arms, both to be completed today.  The echo is always done in the room and takes about 30 minutes.  I expected the same for the other ultrasound.  Instead we took a wagon ride down to the basement.  After about half an hour and lots of complaining (understandably, it can't be comfortable to have someone pressing down on the front of your neck), I asked how much longer it would be.  Answer?  An hour and a half!  Two hours of expecting a four-year-old to lie still.  Thankfully, with a little lunch break and Ninjago (a movie semi-inappropriate for his age, but stare-inducing) he was a total champ.  We were so proud.  We haven't heard any of the results back just yet and don't expect to in too much of a hurry.  Weekend time here is similar to island time minus the fruity drinks and with the addition of smog. 

Positive happenings: Ander is back off oxygen, his attitude is pretty darn great, he's eating more each day, and we had success keeping meds down!  Gold stars all around!

Perhaps the biggest happening of today was that we got to go outside!  Ander hasn't been outdoors for over a month with the exception of wheeling out into the fresh air on the roof of Rady's as he was transferred into the helicopter.  We were actually a little surprised by his reaction.  This boy LOVES to be outside.  Instead, not long after being in the walled garden area, he wanted to go back in.  It reminded me of stories of zoo animals who were released from their cages who chose to go back and stay behind the bars.  Not much longer now we hope.  We'll have him back in his comfortable surroundings and enjoying the sun.

We're missing Coral but thankful she's getting some good grandma time in.  Soccer game #2 tomorrow.  Go, Fighting Red Pandas!  :)

Journal entry by Sara Mason

Tired and grumpy don’t make for a very enjoyable writing experience, so I’m keeping this one short.  Unfortunately, we’re back on the roller coaster.  We were told we were not going home today for three main reasons:  meds, sats, and fluid.  

Meds - he keeps throwing them up.  Ander HATES taking meds.  He gives a million excuses and I try to let him talk so he feels heard but 100% of the time it ends with either me holding him down and shoving a syringe in his mouth if it’s a liquid or telling him he has to have a shot otherwise if it’s pills crushed in applesauce.  I hate the latter especially but both are awful.  Up until close to discharge it wasn’t much of an issue because he was getting most of his meds through his IV.  Now he has 14 doses a day.  That’s 14 times I’m holding him down.  To decrease that, we thought pills were the answer so we could combine a few at a time since it’s a small amount.  They still taste horrible.  I’m not sure if it’s the taste or the combination of certain ones that is making him throw up, but we need to figure it out.  Currently it’s 10:15 and I’m waiting on the pharmacy to remake a half dose so I get to wake Ander up and re-administer it and hope he doesn’t throw up AGAIN.  Hence, the grumpiness. 

Sats - his keep dropping.  He was put back on oxygen.  I think this was actually resolved this afternoon when the surgeons rounded.  They currently have his minimum set for 80% before the alarms blare but they said he'll likely dip below that when he's sleeping and to just change it to 75%.  

Fluid - there's more fluid on his lungs.  *$%#@ is right.  They can't tell if it's chylous or not since he doesn't have his tubes in anymore.  They should know tomorrow when they see his X-ray.  They gave him a bunch of Lasix in his IV and if it's not chylous it should go away.  If it is, Lasix usually won't touch it and they'll need to watch it more.  If it gets worse they'll need to put another chest tube in.

Positives - Ander ate more today than yesterday!  And (shh) he pooped for the first time in two weeks!  That was actually a fourth reason why they wouldn't let us go home but I didn't want to embarrass 18-year-old future Ander who may be reading this by dedicating an entire paragraph to it.  ;-) 

We also had a heart mama friend, who we met here months ago, stop in for the nicest visit with her adorable baby girl and husband.  They were here for a consult with Dr. Starnes.  Her sweet little girl looks and acts like any other baby you'd see, except the fact that they are currently scheduling her SIXTH open heart surgery.  At 10-months-old.  When they talk about these kids as heart warriors, this girl is a WAR-RI-OR.  I can only imagine the kind of grit she'll possess as an adult. 

Just got news his meds are on the way.  I'm praying he keeps them down!    

P.S  Not short, but I feel a little better.  :)

Journal entry by Sara Mason

Hurdles are being cleared!  Ander's chest X-ray showed the little pockets of air have disappeared.  The only thing he has left to prove is that he can eat.  He ate a little more today than yesterday.  They said that likely he would eat more if he were home, so it's a tricky decision to be made.  He can stay here for longer and see if he eats more, or go home and test it out.  The problem is that there is still a risk that he may get the chylous effusions that put us in the hospital in the first place.  They're very common after Fontan surgeries, BUT since he was fenestrated (that hole they put in his heart) with this last one it shouldn't be an issue, but we won't actually know until he's eating.  Here, it would show up in an X-ray.  At home, we will just have to see if he starts to act sick like he did before and we'd have to bring him back in.    

We're also now on room air!  Check out that cute face!  His oxygen saturations are in the low 80s and sometimes in the 70s even and his lips are blue, but that's what we're going home as.  Hopefully with time that will change for the better.

I hate to say it out loud in case I jinx it, but oing-gae ome-hae is a real possibility as soon as tomorrow depending on how well they think he ate.  I'm actually writing this crammed on one corner of my bed at 10:15, surrounded by bags of toys and clothes, waiting for us to be moved to CV Acute.  A room opened and they are currently cleaning it.  Ander is still awake, lying quietly in bed.  We just found out we need to move about an hour ago and there was a lot of activity.  It's not an ideal time for a move, but the promise of something more than a sink bath and dry shampoo is definitely a welcome change regardless of the hour, and the thought of being out of the ICU is magic in itself. 

Pics:
Ordering food he never eats, his favorite thing to do!
Orange Tic Tacs, a win because he ate three.
Checking out the interesting activity at the Vons shopping center.  Lots of times there are hospital employees running to Starbucks.  Sometimes there are meth heads shouting soliloquies in the parking lot.  Austin saw a man be stopped in the store with a "Really?" because he was trying to smuggle a watermelon out under his shirt.  That one I find mildly hilarious.
We made it to the playroom!  You have to have really nice nurses if you go in the ICU because they have to stay with you the whole time.  This time I left and had lunch with our friend Terrie who is just the sweetest human ever.  :)

Journal entry by Sara Mason

Ander was an absolute superstar today.  I was so darn proud.  To speak in much loved analogies again, if today were a track and field event it would have been the long jump.  It also would have been the 400 m hurdles in which he, like his athletically-challenged mama in high school, cleared some but definitely not all.

Our 5:45 wake up X-ray was actually a welcome one, because even to my unqualified eye I could tell that it looked clear.  Hooray!  This meant that his remaining chest tube could be taken out.  This was the last of the especially painful experiences he would have to go through, and he is doing so much better without it.  The last two days each time we have tried to walk, he has cried for the duration and said his chest or back hurt.  Each step was a struggle.  He would walk stooped and feeble like a little old man.  Today, he made it down the hall, down another, and back, all the while being fairly chatty.  He would joke with nurses or say hello to all the babies and kids in the other rooms if their doors were open.  It felt a lot like a college dorm in that way.

He's also off of the high flow oxygen system and on the regular, AND he's down to two liters.  We were supposed to move to CV Acute today but there are currently no beds available.  But it still means we graduated!  

They’re staying on top of the little air pockets in his chest by using the percussor multiple times a day.  Apparently it can easily lead to pneumonia, and we don’t need THAT to happen.  The best thing is for him to be moving around.  The only problem is that he does such a great job in the morning, and then after about 3:00 in the afternoon he is completely worn out.  He’ll nap for three hours and be tired still when I wake him.  He barely moves or talks until bedtime.  I thought the one long nap was better than the on again off again, but I’m not sure anymore if it’s an improvement.  He’s also still not eating much, but that seems to be getting better.  He ate two pieces of turkey bacon and two Saltine crackers for all of breakfast, lunch, and dinner..  Finally, I got smart and bought him some baked chips from downstairs just before bed.   They are his favorite and the one thing he asked for consistently at Rady’s.  He ate more than half the bag, so that was a huge success!  They’re no longer giving him any nutrition through his IV, so seeing that he’s eating at least something that vaguely resembles his normal food intake will be one of our tests for discharge.

Another big exciting happening was that Uncle Greg came to visit!  He came just in time to hear Ander opening up his vocal chords and breaking up those air pockets when he was getting his chest tube removed.  When it was about time for him to leave, Ander said, "But, I'll miss you.”  Sweet boy.  Thankfully, it's looking like we'll get to see Greg and Diane in their ever-so-excited-because-they're-closer-to-us-now new home soon.  :-)

Journal entry by Sara Mason

Ander made great progress today!  He took only one long nap, a huge improvement over yesterday's on again off again sleeping.  He gave into my offers of bribery and ate a total of three pieces of turkey bacon and a few crackers, not much, but still an improvement.  His right chest tube was also taken out (not a fun process) as well as an IV from his ankle.  Bit by bit, the less he has on him the closer we are to home. 

Best of all, we even saw a few smiles!!  They were fairly few and far between, but with the help of his three favorite nurses who all happened to be working today (and are all male and like cool things like toot machines and voice changers and getting scared when he yells "Boo!") we got some winners!

As of now, the only thing keeping us in the ICU is his need for the high flow oxygen system.  He has improved greatly, from needing twenty liters now down to four; however, when he attempts to use the regular oxygen system his sats tank.  His ultrasound report from yesterday showed he has what's called pulmonary edema, fluid collected in tiny air sacs around his lung making it hard for him to breathe.  It's similar but not the same as a pleural effusion, thanks to all things good and holy, and will hopefully take only a few more days to clear up.  His lung is a little collapsed from it as well.  They’ve been routinely using a percussor to try to break up the air sacks, which essentially sounds and feels like a jack hammer on his chest.  He is not a fan.  Fingers crossed we’ll be continuing the upward trend and making our way over to CV Acute soon!

Journal entry by Sara Mason

Tick, tock, tick, tock!  This baby timer is nearing its end.  Austin and I are wavering between sheer excitement and utter terror.  We're so excited to meet our little guy, but with the added complications alongside a 19-month-old sister, we know it's going to have its challenges to say the least.

A couple days after our 20 week ultrasound (on my birthday, actually) we found out that our baby has a heart condition called hypoplastic left heart syndrome (HLHS).  Essentially he has half a heart.  The left side of his heart is extremely underdeveloped and nonfunctioning.  We were devastated and completely blindsided by the news.  Internet searches became addictive but offered little in the ways of positive news. 

Congenital heart defects are not rare.  One in every 100 babies is born with a heart defect.  HLHS, however, is one of the most rare and complicated heart defects.  How rare is it you ask?  Allow me to cut and paste for you.  "The Centers for Disease Control and Prevention (CDC) estimates that each year about 960 babies in the United States are born with hypoplastic left heart syndrome. In other words, about 1 out of every 4,344 babies born in the United States each year is born with hypoplastic left heart syndrome."  So yeah, pretty rare.  However, we count ourselves lucky that there are others.  I've read heartbreaking stories written by parents of children who have diseases that no doctors have ever seen before.  They are completely alone in their struggle. 

Thanks to the internet I've found two other moms in the area who also have sons with HLHS.  Both of the boys are about Coral's age, so we meet at parks for playdates.  Neither of their sons had it easy in the beginning and both mamas talk about their fear for the future, but it's such an absolute comfort to see their boys running around looking...dare I say it...normal.  This past weekend we all did a 5K walk together for a fundraiser that helped support one of my new mama friends and her son.  As you can guess, the cost of hospital bills for multiple heart surgeries and hospitalizations due to related sickness can become astronomical.  (I thank God and the powers that be that Austin has fantastic insurance and he knows he can never, ever quit teaching for the San Diego school district...ever.)  The community support was awesome.  We took a picture of the six of us (technically five and a belly), our brave boys and magnificent mamas, and I look forward to seeing our little half hearters grow strong and healthy together.

For the next 11 days or so (please, baby, hold out for your due date!) we'll be in nesting mode - cleaning, packing, organizing, and oh - that's right - remodeling our kitchen.  I'll also be loving up on Coral in massive doses.  Once the baby is born in San Diego he'll be transferred to Children's Hospital Los Angeles for his first surgery within the first week.  I'll be staying with him in LA for the duration of his hospital stay (about four weeks) and Austin will be with Coral.  It's not going to be easy, but CHLA has the best pediatric heart surgeons on the west coast.  We have faith everything will work out and we'll bring home our little guy to one baby loving big sister.


Ander’s Story

Site created on February 5, 2014

Welcome, friends and family!  We've created this site to keep all of you updated on  Ander's progress as well as to serve as a sort of online journal. We appreciate your support and words of hope and encouragement during this time when it matters most.  Your prayers and positive thoughts mean more than you know!

(Please note that the "Tributes" section of this site is essentially donating to the website in Ander's name.  If you feel strongly that you would like to donate something, please Google "Congenital Heart Defects Nonprofits" to find a charity that will help raise awareness and fund research for CHDs.)

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