Family Time

We had the best four days together as a family!  If only it could have lasted a little longer.  Owen is feeling so much better and isolation has been lifted.  He still has a sniffle in the morning but so much better.  His labs looks wonderful this week and we are just waiting.  He just hit his SIX month anniversary on the transplant list.  Time just marches on.  

We spent a lot of time hanging out at the hospital with Owen but I got away with my other littles and some one on one time with Carson.  We ate out way too much but found some new places to eat. Logi kept us busy with his constant need to "walka walka" and he insisted on the big fluffy Elmo toy in the gift shop.  Kam and I got mani/pedis.  Carson and I got to talk and run a few errands together.  Owen got time with everyone!!

I can't say enough how much I love my family and the hardest part of this journey is being apart.  We can do this. 

Saying goodbye was hard!!  Today was quiet again and I miss the commotion.  I wore my Christmas leggings and watched Gilmore Girls while Owen fought ninjas on his iPad.  We snuck in a little math homework.  We had several visitors and that helped pass the time.  The days are SO long in the hospital but the weeks seem to pass by quickly.  

It's almost December!  For those that wanted to send Christmas Cards to Owen I'll post the address here and again tomorrow.  He has an entire blank wall to post all the cards.  It would be fun if you included your favorite Christmas tradition in there and tell us where you are from!  We would love some more Christmas Cheer!!

Owen Simmons

C/O RMH Stanford

510 Sand Hill Rd

Palo Alto, CA 94304

Thanks and keep those prayers coming!

Thanksgiving 2016

Our Thanksgiving will be a memorable one and I will always appreciate the crazy wild family dinners a little more. Owen has been sick with low grade fevers and a sore throat.  It just takes it all out of him!  So far every culture has come back negative.  Blood, strep and the full viral panel... all negative.  His throat is feeling better today but he sounds a little nasally and raspy at night. Sigh. We seriously don't go anywhere to get sick...no playrooms, no common rooms.  Just school and walk the hallways, always with a mask on and I wipe everything down with the wipes that kill everything!  I'm going to start a new reverse isolation so anyone entering Owens room has to wear a mask and gloves. Poor guy has felt crummy!

I did find the tv cart and Xbox One in the hall yesterday and snatched it up.  I wiped it all down and he has been loving it!  He made me play Minecraft for hours and it's seriously so hard so he got a kick out of whooping me!

I had to order my turkey dinner off Owens menu because the cafeteria closed early and I didn't make it down in time.  It was actually pretty good!  Owen slept and I ate in silence.  It was humbling.

Then my husband and babies showed up and all is right again!! They had a delicious meal with my family before heading to the airport.  I just can't get enough smooches from Logi and I miss my family so much!  The next few days I am soaking it all in!

I leave at night to snuggle Logi and Kam to sleep and then race back to the hospital to be here for Owen.  Carson gets a kiss on the pass off.  My heart is torn between all four of them and I feel so lucky that they are mine!!

Owen feels a bit better today and hasn't needed Tylenol in the past 12hrs!

To keep things fun...Logi insisted on wearing Owens flip flops on the wrong feet and outran both Kam and I in the process.  This boy is gonna keep me young.  My heart is full and we have so much to be grateful for! 

 Owen is still waiting for the call. We pray nightly for Aly's family and are so grateful to them.  Owen prays for his future donor family and knows that each day he waits, that another family is getting one more day.   Happy Thanksgiving!!!

 

 

 

 

 

 

 

Passing Time

It was a quiet weekend in the hospital.  Owen likes staying up late and sleeping in even later.  His labs all looked great this weekend and we are just passing time.  He loves to fly his little race car drone around the hallways and we make friends with other families.  We are finding our groove with hospital school and Owen definitely prefers the afternoon sessions better.  When he finishes his fifth chapter, I'll share his book with everyone.  He has discovered that he actually loves writing!

Mr independent always takes his own temperature and this week decided he was going to scan his own meds.  He knows what all his meds look like, can name them and knows what they do.  That's pretty awesome since he is on about 13 different meds.

Today he wanted to be super brave and remove his own IV.  He has had this PIV since Halloween and we haven't used it so it was time to go.  He was nervous but did great!

We are just making the most of our situation inpatient.  We stay away from the playroom and stay masked up to avoid germs but get out of the room several times a day.  We miss home but this is our home until we get back to AZ.  I moved into a bigger RMH this week.  My last room was TINY but perfect for just me.  This one has a trundle so we have a little more space.  It's cozy!

Back home....  Carson did it!  He had some help, but he got all moved!  Logi is loving the new playroom so much.  

Larissa did a lot of organizing and unpacking toys today and it looks great. There are boxes everywhere in the house and they will probably be there when I get home.  

Kam sent me this picture... This little guy caught a ride on one of the boxes.  Awesome.

It's good to be moved.  I'm excited for the holidays.  In two days I'll be snuggling my husband and babies...we will be together again. Things are gonna be okay.

 

 

 

 
 

 

Busy Busy

It has been a very busy couple of days!  Owen is getting into a routine with school and therapies.  We have had lots of visitors the last few days which is always wonderful!  Allison and Josh came by and brought all of our linens they were storing while we were in AZ.  Owen got to chat with Josh about his cath lab experiences (ask for fruit cocktail flavor in the mask, ask for music, the spray adhesive helps remove the pressure bandages from the groin area,ect).  Josh rocked his cath yesterday too!

Joanie, a transplant mom I met back in 2013 when our boys had their transplants, came by for a visit.  It was so great to see you!

Auntie Janesa came down from the city to chill with us yesterday.  We had a great time!

Owen has been going to school everyday.  Yesterday afternoon they were working on science.  He was the only younger kiddo in a group of teens.  They were working on predictions, ratios and percentages and he owned it!!  This boy is super smart and I loved hearing him engage with the older crew.  

Today was art day!!  The inspiration was icebergs in the Arctic.  Look how awesome these turned out!  The little polar bear family and killer whale were made out of model Magic.  So fun!  Owen was very proud!

We are looking forward to a long weekend.  Owen's "Star Wars Buddies" bought him Suicide Squad on iTunes so we will snuggle in bed and watch tomorrow afternoon.  We are making the most of our time here.

Kam had a BUSY week!  Dance concert week is always crazy with daily practices until 6 and two concerts until 9pm.  She helped pack the house, helped with Logi and got her homework done.  She even aced her AP Physics test to bring her B up to an A!!  Seriously amazing girl!  I was so bummed to miss her concert but Grandmas and Grandpas showed up to support her.  I can't wait to watch the DvD when they visit next week!

Carson and Logi closed on the house today and got keys!!  Tomorrow is the move and I am so excited.  I wish I was there but we were on google hangouts most of the afternoon today planning where things will go.  So exciting!!

Logi had a trip to Urgent care tonight because he kept pulling on his ear and crying.  He had a mild ear infection and we put him on his first antibiotic ever...mostly to cover our bases since they are visiting soon.  I hope he feels better and I am sad I don't get to be there snuggling my sick bubs.

We can do this!  I am trying to come up with a fun idea for Owen this holiday season.  It's not fun to spend the holidays in a pediatric hospital.  I'm sure the kids will be spoiled but that's not what Christmas is all about.  I've gotten a couple great ideas so watch for that tomorrow.

Good night!

 

 

 

 

 

 

25 Weeks on the List

Happy Tuesday!  Owen slept through morning rounds and I barely got him up to take his morning meds.  This boy stays up so late and then likes to sleep in.  I can't say I blame him, but this mama needs more sleep.  

He figured he might as well order lunch so he asked to look through the menu.  The funny thing is...we both have this menu memorized!  It hasn't changed in years, yet we both look through it several times a day in hopes that we missed something delicious.  

We finally made it to school for the afternoon session.  The afternoon school is pretty quiet as all the kids are exhausted from their morning session and just don't come back for more.  Since Owen likes to sleep in and LoVeS the one on one instruction, I think we found a good fit for school.  He got 2 on 1 today for his first journal entry.  He did this all on his own.

(translation)

The king looks upon his castle and sees the knight of the battle ages.  The knight challenges the king to a duel.  The king accepts.  They duel but the king lost and the knight won.  (The king is about half the size of the knight.  Unfair battle!). 

Later we played some UNO and headed back to the room.  Owen sent me for Sprinkles cupcakes at the mall and the walk felt good!

Tomorrow we have labs and basically just keep on hanging out!

Logi was busy at home.  Larissa has been helping get things picked out for the new house.  She is going to get the playroom all set up with Logi during the day.  Gotta pick a color scheme and decorating is not my forte. 

Thank you to everyone for all the meals, helping pack, taking care of the munchkins, getting kids where they need to go, and making things a little easier on us right now.  We are so grateful!!!

 

 

 

Getting Out

Owen is slowly starting to venture out of his hospital room.  It takes some serious negotiation but Mom always wins.  Part of the negotiation is that he has to walk a little and then I push him the rest of the way.  It's less an issue of cardiac endurance than it is just overall deconditioning and cramping in his legs.  He continues with daily PT and the more he moves the better he will feel.  The leaves are changing color and the atrium is a little escape from the halls of the hospital.

I finally got Owen dressed and off to hospital school today.  It was not an easy task but the thought of losing his iPad for the day was enough to get him moving.  We made it in time to work on some geography and then it was free play.  Tomorrow we will try to get there in time for actual learning.  We had intentions of making it to the afternoon session but got wrapped up in PT and lunch.  Owen did say "hospital school is kinda fun"...so we may have an easier time tomorrow.  He did say he feels out of place and feels like he might not understand something they are learning and there are some uncertainties there.  Kevin has been his teacher before and he is fantastic so I know Owen will do great once he feels comfortable.

Nurse Jay brought his Millenium Falcon drone in for Owen to play and of course that got him up and moving around the room!  Nurse Justine tried to get him to Pokehunt but he was feeling lazy by 5pm.  We aren't used to daylight savings because Arizona doesn't ever switch so by 5pm we are feeling like its 10!  

Last night we had the Elders (Kip and Harrison) come visit and hang with Owen.  He laughed a lot and had a great time with his "Star Wars Buddies".  

Overall, we are hanging in there.  Owen is in a sweet spot with his Milrinone.  His kidney levels were elevated on Sunday so we increased fluids a bit and I added another 450 cals to his gtube feeds.  I feel like all I do is calculate his Ins and Outs for the nurses.  I am going bonkers in this room and find myself wondering how I did this for 100 days before.  Taking it a day at a time and praying for our next miracle while giving thanks for today.  

Kam has dance concert week so she is rehearsing until 6pm every night and then concerts Thur and Fri.  This will be the first dance concert I have ever missed and I am bummed.  I'll watch the video and make Carson FaceTime from the concert so I can watch in real time. 

Tate entertained Logi this afternoon and It looks like he loved it!  I'm so grateful for all the love that Logi gets while I am gone.  He cried while on FaceTime tonight and kept saying "ma ma ma ma". Bless his heart.  Soon we will be reunited.  

We are making the days count and missing each other like crazy!

 
 

 
 

 

PT and Zoo

Two weeks inpatient and we are finding a new normal.  Isolation was lifted Thursday morning but we didn't get our act together fast enough to make it to school.  Our days are pretty lazy and boring.  We have lots of visitors in and out all day.  The nurses do vitals every 4 hours but we are on our own most of the day.  The Athertons came to visit yeaterday and that was a wonderful treat!    Not gonna lie...I'm going stir crazy in this room!  I've even read a novel this week and everyone knows how much I dislike reading.  I'd much rather be busy or doing something outdoors.  I am getting a lesson in patience and slowing down.  

After a million hospital stays, Owen just discovered the mirror in the bedside table.  So exciting to find this little treasure.

Physical therapy comes by daily and we have to get creative to motivate Owen to work out.  Whatever we are doing is working because he is actually excited to work out!  

We are hanging in there and trying not to  be "waiting for the call" but living life the best we can.  

Back home...

The kids spent Veterens Day at the zoo with cousins.  Carson is home sick so he missed out.  It was Logan's first trip to the zoo and he loved it!  Owen was never a fan.."oh wow..another animal" (sarcasm inserted here).  Logan loved the lizards the most but the tiger was pretty cool!

They are preparing to move next weekend.  We had friends and family helping pack.  We discussed swapping places for he move but its cheaper just to pay movers to do the job.  We can do this!

170 days on the transplant list!

 

Isolation

I haven't posted in a few days because Owen has been in Isolation.  One of his urine culutres from Nov. 1st  was a dirty sample and came back positive for multi drug resistent Pseudomonas... the same Pseudomonas he had in early June (Pneumonia) that had him on Isolation for 100 days.  I'm happy to say we got things all worked out after 72 hours on isolation and his newest cultures were clean.   Owen was thrilled to get out of going to hospital school and is happy to hibernate in his room all day.  I am the one going crazy!

 
We are holding steady with the .5 of Milrinone.  He feels good, his labs look fantastic and we are just tweaking his anticoagulants each day.  He had an echo on Monday and things look the same.. not worse.. so that's positive.  We have been trying to determine if his LAD Stent in his coronary is closed off, or if it has blood flow through it.  Inititally this was terrifying, but they said it's very possible and that his heart created collateral vessels to compensate.  It's too risky to take him to the cath lab.  The team had a discussion with the Stanford adult team (since they see this more often) and they can do a CT with contrast but the HR has to be brought down (with beta blockers) to about 70bpm.  Owen has chronic Tachycardia and his HR is 130 on a hefty dose of beta blockers right now.  There's no way that option will work.  IF there is no blood flow through the stent or it's clotted off, then we could stop a few of the blood thinners he is on.  This makes transplant and open heart surgery a lot less risky!  If we can't be positive the stent is closed off and we stop them, and he clots, we have a bigger issue.  So it's a just a matter of weighing risks.  This will be his 5th open heart surgery and the risks are increased everytime you open up the sternum.

On a positive note.. he feels great.  He is in great spirits!  We started PT, OT and we will start school as soon as this isolation is lifted.  My job is to keep him healthy and infection free.  Good hand washing and staying on top of all medical professionals to do their part (wash hands, good line defense, ect).

Oh.. one more thing.  Owen's antibody levels came back extremely low again, so still no voids on the transplant list.  It's remarkable that he was once 98% sensitized and seems like a lifetime ago that we spent every month for two years doing IVIG infusions.  It's a HUGE blessing!!!

 
We are so grateful for all the help we have back home getting the house packed up and ready to move.  Carson is in over his head with the move andI am doing my best to help being 900 miles away.  We couldn't do it without all the help and support from family and friends.  Also, Larissa watching Logan each day has been incredible!  He is happy there and loves to be with Sam the beagle.  He is thriving and happy.  Kam is working so hard at school, she has dance concerts next week and she is helping pack/move.  I don't know how we lucked out with such an amazing girl.  She is one of a kind!

We are so lucky.  Grateful.  Blessed.