Six Months on the List

Things are looking up. We had a full weekend. Friday started with Gigi's slumber party sleepover and man those girl were crazy. Followed by a Saturday of errand running, Moms Night Out and a late night dance performance for the girls. Sunday was my Sis's birthday party and it was freezing in the desert! Lots of late nights, followed by early mornings, equals a very slow Monday for us!

Kam got to spend a extra time with this little peanut {Bridgit} this weekend and she really likes Kam.  I'll keep trying to convince Carson to try for baby #3, because we already have a built in babysitter. 

Owen has been feeling so much better and his oxygen sats have bounced back up to his baseline in the mid 70s.  His energy is still a little low and he wants to relax most of the time.  At the party Sunday, he was just as happy to sit on the couch and watch Ironman 1 and 2!  That and, Gigi brought home her class pet this week (a gerbil, hamster thing) and Owen loved "the rat". 

I did speak with Owen's team at Stanford on Friday and they said they have been discussing having him be followed more closely locally.. which would require Owen and I to move soon.  We'll see how things go in March, but I will pack a bag just in case.  I am hoping he is re activated on the list by the end of next week as it will be 4 weeks from his RSV diagnosis.  Maybe he'll get an offer soon after?! 

Can you believe that he's been on the transplant list for SIX MONTHS??!!!  Where did the time go?

Cardio, Psychology, and the Best Sis ever

First of all.. thank you for all your prayers and support... I am feeling better about things.   Some days it's such a reality check and I realize I probably need that big dose of reality now and then.  Owen has been an emotional roller coaster this past week.. mostly happy, but also can be so grouchy and then sad.  I have been reaching out to other families to see if they have advice about play therapy.  With all he's been through his first five years and with transplant in his future... I think it's time to get a psychologist on board to help him through things.  I think I am a pretty great mom and raise some pretty fantastic kids, but I can also admit when there are some things I just don't have expertise in.  I want Owen to have a therapist that knows how to work with critically ill kids.  He doesn't have behavioral issues at all and his communication is stellar.  I think he just doesn't know how to deal with some of his emotional feelings at times.  I have no idea the impact that all of these procedures will have on him in the long term nor how his mental health is affected by all the hours he spent on bypass, his low oxygen saturations, ect.  So if you have any advice on looking for a therapist.. please share!  I am working on getting some referrals from cardio and his peds office and I'll start there.  I just want to make sure we stay ahead of the game.

Today Owen had a cardio appointment with our local transplant team.  An hour after we got there, they began his echo and the echo tech was my least favorite ever. She was really short with him and not friendly at all.. she took forever to finish up the pictures and I hope we can avoid her in the future.  Yikes.  After we had been there two hours, we finally saw our nurse and she did a quick assessment.  She seems to think all is well and didn't seemed concerned at all.  Then Dr J (our new cardio locally since Stock can't see transplant patients) came in and said his echo looks the same.  He asked me if I knew what RSV was.. obviously I said yes.  Then he said Owen just needs to have the full four weeks to get over it and then we will see how he's doing.  He didn't assess him and spent maybe 45 seconds in the room.  It was rushed and I just left feeling like it was a waste of time.  Owen was so frustrated after 2 hours of waiting that he just had a complete meltdown in the office so I didn't get to ask any of the questions I had, nor did I feel they had the time to answer them.  I just don't get the 'I'm confident in my team' feeling when I'm here.  It was not a good visit. 

I am glad they consider Owen stable.. and hopefully he is.  His body may just need a few more weeks of healing.  On a positive not.. check out his sats just now!!!  So much better than the 60s where they have been the past two weeks!

After cardio, we met Daddy for lunch at Four Peaks.  It's always fun to see my hubs on his lunch hour and Owen was just thrilled to be anywhere but cardio.  We ran home, did a few chores and were out the door to pick up Kam.  I really need to do more updates on my big girl.  She is thriving in Jr High.. continues to get all A's.. has a ton of really great friends.. dances about 8 hours a week in the evenings...and is the best Sis ever!!  Last night she got home from dance at 9:30 and we sat in the kitchen talking about every detail of her day, the girls at dance, and laughing.  I love having a daughter, especially this girl.  She is so funny and sweet, but she isn't afraid to call you out and tell you how it is.  We just finished filling out her 8th grade registration for next year.. electives of choice ended up being Orchestra and Art.  She is going to knock the socks off her art teacher.. she's amazing!!

I'm off to throw dinner together and get the girls to dance.  Owen and Daddy have a "boy movie night" planned, so I should really go to the gym.  Or just sit and watch my favorite girl dance at the studio.  Life is good.

 

Until tomorrow.  Our team at Stanford has a transplant meeting in the AM and they'll call so we can discuss Owen.  They will be thrilled to hear about his increased oxygen sats and hopefully agree to give his body more time to get rid of this RSV junk.  Who know a small respiratory virus could wreak so much havoc.

Looking for Answers

I have this huge sign hanging in my family room and it is a daily reminder for me.  The last week has been a little stressful for me and heavy on my heart.  I've been in close contact with Owen's transplant team at LPCH and reality is setting in.  My little guy is really, really sick.  I don't know why it's just hitting me, but it is, and at full force.

The signs of RSV were gone within the first week of being diagnosed.  He had what appeared to be a common cold... congestion, low grade fevers off and on, and a little cough.  The symptoms were gone the first week.  I thought.. okay.. let's put him back on the list because he's fine.  Right?  Then I got the reality check when we were inpatient for IVIG and his sats didn't budge out of the 60s.  Then I thought.. oh..they will pop back up to the mid 70s soon.  I'm optimistic.

Then we had the weekend and he relaxed a lot.  On Monday, his speech therapist mentioned that he sounded really winded and saw a noticeable change.  Oh.. he's just kicking this RSV junk.  She hadn't seen him since the end of Jan.  I have been speaking with the transplant NPs at LPCH every few days and relayed how his weekend was.  His sats were finally sitting at 70 consistently.. better.. but not great.

Our NP said they had been discussing Owen daily and are getting worried.  He is in heart failure and has been for so long.  He is being managed well at home, but at what point do we say that he needs more support and get him admitted for closer monitoring.  What point do we begin Milrinone (IV meds).  With single ventricle kiddos, they spiral down, they spiral fast.  There is no Berlin Heart, VAD, or other options.  As we saw with Kylie this week, they run out of time, and that has been so heavy on my heart. 

I want to make the right decision, but it's a burden to bear.  I silently pray for answers all day.. a big sign.. a clue.. something to tell me this is it!  It's time.

This morning we went to Gymnastics for PT.  His PT hadn't seen him in a few weeks and she said she saw a noticeable difference in his breathing and he was as blue as the mats.  She was a little nervous and tried to STOP him from doing activities.  He is just as happy as can be.. throwing the foam around, kicking the ball and felt good enough to keep on going.  He's great at self limiting, but could he be so used to sats in the 50s (while at play) that it doesn't phase him?  I would be flat on the ground.  It hit me.. my boy is so sick. 

I called LPCH to check in and relay how PT went.  She said "ya know.. we are stepping back and looking at the BIG picture.. we don't want to miss anything.."  

Owen has a cardio appointment tomorrow morning with his local transplant team.  He has an echo scheduled and clinic visit.  I will obviously relay all the info to them. 

In speaking with his doctors.. this may just be the RSV wreaking havoc and his body needs more time to get over it!  It could also be the RSV creating a ripple affect and his heart just can't keep up.  It could also be that his heart is getting sicker and it's time to take further action.  I don't know.  I wish it was in my face loud and clear and maybe it is.  Maybe I am missing the biggest sign right in front of my face. 

So glad I have this sign to look at everyday to remind me that "Every Little (or not so little) Thing Is Gonna Be Alright!" 

IVIG, Valentine's and Crummy Sats

Owen has completed his 8th round of IVIG! We went to the hospital on Wednesday afternoon and after a LONG process, made it home last night to celebrate the end of Valentine's day.  My sweet husband picked up flowers for me {Roses} and the other flowers were for Kam.  He also got us all chocolates and cards.  It was such a kind gesture after my long, sleepless night in the cvicu.

Today, it was back to everyday life, and I started filling out Owen's Kindergarten registration packet.  I'm not even sure he'll be cleared to attend Kindergarten yet, but I want to get him registered and in the right school.  We can always work with home based tutoring and making accommodations later.  It's easier to get the services he'll need if we have him registered.  These are some of the questions.  Number 3 is a gem and I may need another page. :) 

On our way to the hospital on Wednesday, I let Owen go on a mini shopping spree to blow the rest of his birthday money.  He was so excited to finally find Thumpback, Eyebrawl and Hot Head for his Skylanders game.  These three are so hard to find and I refused to pay double on Ebay.  Now you know how we plan to spend our weekend. 

Owen's sats have been pretty darn crummy lately.  While he doesn't show any signs of lingering RSV.. his lungs are obviously still recovering.  His sats in the hospital didn't budge above 70 the entire 24 hours.  This is where they have been resting.. 67% oxygen sats are not good. :(  He is pretty blue.. his fingers, toes, lips and every vein in his neck/chest area is clear as day.  Just when I want to say "I'm not worried..."

I get a letter like this in the mail...  "Owen is too ill to be actively listed at this time..."  I knew they switched his status to inactive, but seeing it in writing and worded that way is not settling to a Mama's heart.  I agree that Owen is not recovered enough to be put back on the list and may not be for a couple weeks.  We are following up with Cardio next week and I requested an echo to make sure this isn't impacting his heart function as well. 

Until then.. we will enjoy our upcoming three day weekend.  Get lots of rest and heal up!!   Happy Friday and I hope you all had a wonderful Valentine's Day!!

Hero's Heart

STRONG AND BRAVE

 

TOUGH AND SMART

 

A REGULAR BOY

 

BUT WITH A HERO'S HEART!

My uncle gave Owen a birthday card this weekend and these were the words and I felt they couldn't describe O Man more perfectly!!  This has been an emotional day for me.. more than a few tears shed.  One of Owen's heart friends, Kylie, a little 4 1/2 year old sweetheart passed away.  She waited for almost a year to get her new "Lub-A-Dub" and 7 of those months were spent in the ICU.  Her mom, Chrissie, is one of the strongest moms I know and she slept in a pop up camper in the freezing snow outside the hospital to be near her baby girl.  Bringing in snow to her ICU room so she could play.  My heart broke when I read her Facebook update today.. her body was just too sick. 

Then I just checked facebook to read that another heart friend, Katy (just turned 5), is getting her heart after waiting over TWO years!  So many prayers are being sent to both families!! 

Please become an organ donor, have an open conversation with your families about organ donation.  No one wants to imagine losing their child, baby, loved ones... but have the talk about what you would do if tragedy happens.  Thank you for all your prayers for Owen and his buddies. 

Owen is doing so much better.  We still have him on inactive status, so he cannot get any heart offers yet.  On Friday, the transplant team at Stanford will re evaluate.  Owen has IVIG this week.  He sure showed RSV who was boss this week!!

Last Birthday Party

We had a fun weekend!  On Saturday, Kam and Gi performed at the Globetrotters game and my Sis was the lucky one to take them.  I stayed home with O Man because he was working hard at kicking his virus.  He was already feeling so much better by Saturday afternoon.  On Sunday, his symptoms had almost completely subsided, and he was so happy! 

We had a family party planned to celebrate Owen, Kam and Gigi's birthdays!  Nana with her Bridgey.  My sister said that she'll walk up to her in her swing and say "it's okay.. Mummy's here."  Nana was telling me last night that I was holding her baby and isn't she sweet.  Her memory is going quickly.. some days she recognizes me and calls me her friend.. she isn't sure who we all are or how we belong together, but she just loves us.  I handed her Bridgey and gave her Sophie the Giraffe and she loved squeaking it for the baby.

Gigi and Kam both looked goth at the party... they apparently didn't wash off all their performing eye makeup from the day before.  The girls were outside playing with sidewalk chalk while my Dad and Rog cooked burgers and dogs on the grill. {see owen's purple toes peeking in the pic}

I found a bunch of sand toys in car.. so they were digging to China.  Owen looks so blue in this picture.. I probably shouldn't dress him in so much blue. He was freezing too.  It was cold.. well 60 degrees cold.. it's cold for us.

Carson and Owen warming up after playing outside.

My pops is rocking his pink cast!!  Last Tuesday after running Gigi to dance, I got a call a few minutes after he dropped her off to tell me.. "I was in a car accident, call mom and tell her not to worry."  His BMW got tore up, his airbag crushed his arm and not a single person stopped to help on one of the busiest intersections.  The other driver walked away okay, my dad refused to go in the ambulance.  I picked him up and his arm was looking gnarly with airbag rash.  We ran to get Gigi at dance and took her home on our way to the hospital.  They confirmed his arm was broken pretty bad and we were home by 10:30pm. Gigi wanted him to get a hot pink cast.. so he did.  Only real men can pull off pink. 

Back to the party... after a delish dinner, we sang Happy Birthday to the silly threesome.. where is Gigi? 

I couldn't resist this picture of Liv.  She was sitting so patiently at the table waiting for her cake. 



The kids opened presents and we called it an early night. It was simple, fun and this officially wraps up the kid's birthday celebrations!!

CHD Awareness and Status 7

This week kicks off CHD Awareness week.  I struggled with what I should write about because I don't just want to state the facts.  I don't just want to say "raise awareness."  I want to give specifics of what you and I can do today to make a difference and maybe even save a life!!

*Donate Blood* -- Owen has had more blood transfusions and blood products than I can count.  I am guilty of putting this off.  You can organize a blood drive or just simply donate yourself.

*Pulse Ox Testing* -- If you, or a loved one, is pregnant and having a baby did you know you can ask for a simple, non invasive pulse ox test at the hospital.  Some states are mandating pulse ox testing {finally} and this can be an early indicator of a CHD in your infant.  1 in 100 babies are born with a CHD and many go undiagnosed. 

*Sports Physicals* -- This isn't one that gets talked about a lot, but my heart just breaks when I constantly hear on the news about a child coding on a football field or basketball court.  Most of the time, it is because of an undiagnosed heart condition.  You can ask for an ECG test during a sports physical and many times this will indicate if there is something going on with your child's heart.

*Organ Donation*-- This is obviously one that is so close to my heart!!  Talk about organ donation with your loved ones.  Make your wishes known to those closest to you.  One organ donor can save many lives!!

*Raise Awareness* -- I feel like Owen is a walking billboard for CHDs.  Owen wears oxygen so it is obvious to anyone around us that there is something "sick" about him.  I get asked every time we are out.. "what happened?  or Why is he wearing that?.. and I answer honestly.  Most of the time people are so interested they want to dig deeper, and I am approachable, so they do.  There is no celebrity endorsers for CHDs, you probably won't hear any big news coverage, there is no major marathon to raise funds for research, and no big funding coming to the CHD world.  There is no cure.  There is no pharmaceutical company that can make millions off a miracle drug to fix a broken heart.  So as heart moms, we are doing what we can to support each other and pray that our doctors continue to find surgical advancements to improve the quality of life for all these kids.

Thank you all for your many prayers for Owen!!

**As of yesterday, we had to remove him from the Transplant List temporarily.  This respiratory infection is kicking his butt and we just can't risk accepting a donor heart while he is struggling.  Putting him on Bypass would be too risky, so we will just ride this virus out and get him listed again soon.  He will not lose his time accrued on the list and his time will continue to accumulate.  He is just put on Status 7, which is an inactive status.**

RSV

Owen has been feeling super crummy since Sunday at about 2am.  He has had low grade fevers, lots of congestion, low sats {mid 60s}, and lots of coughing.   He is up at night feeling awful.  Crabby.  Tired.  A bit miserable.

We were going to bump up his IVIG to earlier in the week, but Dr Rosenthal wants to wait until he is fever free before the IVIG infusion.  A side effect to the IVIG is fevers, so we need to know if he spikes a fever, what the true cause is.  Makes sense.  I would like to let him rest up and heal over the weekend and shoot for IVIG next week.. but we'll see... I just don't want to bog him down with all the extra fluid.

I took him to the pediatrician today and we did a swab test.  Parainfluenza was Negative.  RSV Positive.  Darn RSV!  His chest xray looked great, no pneumonia. 

We can't treat RSV, so we just have to ride it out. 

I just hate that he got the virus from me and it didn't drag me down, but it is wiping him out.  Poor guy. :(

An Icky Bug and Antibodies Return

Despite my constant disinfecting, living in a bubble and being over cautious.. Owen caught a bug.  I have had this constant draining and feeling tired for about a week, now Owen has it, but worse.  Ugh.  I hate that he always gets the worst of it.  He started with a low grade fever early Sunday morning, and he sounded awful, like a sick grizzly bear snoring.  All day Sunday and then today, he has had off and on again low grade fevers.  Lots of congestion, almost like drowning in mucus.  It's yuck. 

I called his transplant team at Stanford because you can't go on bypass if you are sick and so that can obviously affect them accepting a heart offer.  Our NP suggested we get him in for his IVIG earlier in the week {we were originally scheduled for Thur}.  Since we have a direct admit to the CVICU, we might as well swab him so we have an exact diagnosis and we can also do a chest xray to ensure he's not developing pneumonia or something more serious. 

I then called our local transplant NP and relayed the info, but she said they are on a bed crunch since so many kiddos are sick.  It does sound like RSV, but so far he's handling it well.  His sats are dropping into the mid 60s {not good}, but I am staying on top of the little noses to keep him clear so his oxygen is effective. 

We'll see what unfolds the next few days. 

As far as the antibodies... there is a specific antigen that continues to pop up on Owen's PRE-IVIG labs.  Each month we do an IVIG treatment and we draw pre-labs.  Then we run the 12 hour infusion and draw post-labs.  Both are tested and each month the A20 antigen continually pops up PRE-IVIG, and then disappears POST-IVIG.  So the IVIG is effective in knocking it out, but since it continually pops back up month after month, we need to make sure the donor doesn't carry that specific antigen and that there is a negative cross match with the donor.  So to be on the safe side, since time is on our side right now, we added that as an VOID on his UNOS listing.  So his highly sensitized antibodies are at about 24%.  All that means is that out of the donor population, there are 24% that carry that specific antigen, so we would not be able to accept that heart.  It's definitely a setback and could cause his wait time to increase, but it could be worse. 

Now we just need to knock this virus out and pray that it doesn't get worse. 

Heart Month!!

It's February 1st, and the kick start to HEART MONTH!!!  It's time to raise awareness for Congenital Heart Defects and my little fighter.  You won't see big celebrity endorsements, telethons raising money, or even much media attention for our 1 in 100.  That's right 1 in 100 babies are born with a CHD!!!  More children die from Congenital Heart Defects than all the childhood cancers combined!  Not a day goes by that I don't hear of another baby being diagnosed, a child going in for an open heart surgery or a mother completely devastated over losing their sweet child to a CHD.  Please join me in raising awareness. 

Three open heart surgeries

Seven cardiac catherizations

One Gtube placement

Six IVIG treatments

Thirty {at least} Echos and EKGs

Four years on oxygen

 Five months waiting for his new heart

 

... this little fighter wears his scars proudly!!

Today is National Wear Red Day for Hearts!!!  I am wearing my red for Owen and all our friends fighting with a CHD!!

And because I am awful at taking self portraits.. seriously.. how do people have such fabulous bathroom photos on facebook.  Totally off subject.  Ha.

Join me in wearing Red for Owen!!  Ok.. go change your clothes if you're not wearing red. Or wear Red pajamas tonight.  Let's raise some attention for Congenital Heart Defects.  February is my FAVORITE month! Happy February!!