Family Fun

It has been so great having family in town this week.  Owen prefers the girls to hang out all day and play with him.  It gives me some respite from the hospital and I get to take an afternoon nap with Logi at the RMH... which is pure bliss.  The girls have been playing board games and watching really weird YouTube videos with Owen. 

Logi likes to wake up super early so Larissa brought him by yesterday to have breakfast with mama and let the big girls sleep in.  The boys love eachother but Logi drives Owen crazy at the same time.  After about 100 times of Owen telling him not to touch the IV pole, Logi thinks it's funny to run over to it and put his hand up and yell "no".  These photos make my heart seriously happy!

The girls came to play and I left with Logi for a bit.  We snuggled, he slept and I just soaked it all in.

The girls and I went to the mall to walk around and the weather was so nice!  We had dinner at the RMH and I gave Logi a bath.  Another one of those little daily "chores" that I didn't realize I was missing out on.  It's so nice to get away from the hospital but my heart is torn each time I walk out the door knowing that Owen is here and can't leave. 

Owen and I had another decent night sleep on 3 West.  We did our long morning routine of bathtime, weight (up to 23.5kilos or 51.8lbs), new linens and I scrub down his room with the hospital wipes.  You know you've been in the hospital too long when you get excited for new leads and pulse ox probe every morning. :)  It's the little things.  

The kids came in this morning with breakfast.  The girls and Larissa headed to Nordstroms to pick out school shoes (it's that time again) and the boys hung out with me.  Logi participated in rounds for the second day in a row.  He folds his little arms and stands in rounds while listening to everything they say.  A future doc perhaps?!  We watched his Sesame Street YouTube videos and played with the Jenga blocks.  He is the sweetest little boy!

We met the girls at the RMH for lunch and they walked back to the hospital.  While Logi helped me with laundry and napped.. Owen didn't make it to the bathroom in time with his IV pole.  So the girls got to do changing duty...and this is why Kam wants to be a doctor and not a nurse.  Notice Owen's mischevious smile..

Oh these days are full of joy and I am so happy.  Tomorrow morning we will pick up Daddy at the airport and then our family will be together for the first time in five weeks!  Owen continues to do great.  I'm certain he is a little fluid positive or I suppose that could be real weight gain.  He is getting a pretty good dose of TPN/Lipids and Gtube feeds.  Keeping our spirits up and hanging in there.


Grandma's funeral is tomorrow and we will be there on Facetime.  There was no way to leave Owen even for a day to get down there since I do all his care.  Here is her obituary for family and friends that know Betty Lou.  I already miss her like crazy but know we will see her again.

Betty Lou Wescott (née Smith) passed peacefully to the other side of the veil on July 5th, 2016 in Mesa, Arizona at the age of 88.

Betty was born on November 1st, 1927 in Tiffin, Ohio to Albert and Ellen Smith. Betty is survived by her daughter, Vicki (Greg) Boulden; sister, Arlene Krause; granddaughters, Kelli (Chris) Burson, and Andrea (Carson) Simmons; grandsons, Michael Messerli, and Daniel Messerli; and great-grandchildren, Kamryn, Giselle, Lucas, Lucy, Owen, Olivia, Bridgit, and Logan. She is preceded in death by her husband Eldred Ray “Chuck” Wescott.

Betty was an example of determination, and enjoyed overseeing her businesses. She was a witty individual who always brought a smile to the face of any who crossed her path. She sincerely loved her family, and she showed that love generously.

A visitation is scheduled for Saturday, July 9th, 2016 at 10:30am at Meldrum Mortuary in Mesa, Arizona. Interment to follow at Green Acres Cemetery in Scottsdale, Arizona. All are welcome to attend and celebrate Betty’s life. The family would like to thank caregivers at Arbor Rose Day Club and Memory Care for their efforts and love shown to Betty in her last years.

Reunited

It feels so good to be reunited with my babies and to have all three kiddos together again. Larissa, Ry, Kam and Logi flew in yesterday at noon. Owen was totally on board with me leaving him at the hospital ONLY because he knew I was bringing back his favorite people.  I thought for sure this little munch might have forgotten his Mama, but he just missed me madly.  He has been snuggling, smooching and playing with my hair.  I can't wait to get some much needed pedicure and shopping time in with Kam this weekend too. 

The girls stayed with Owen for a while yesterday and played games with him.  Logi, Larissa and I got them all checked in at the RMH and I showed Larissa around.  Logi found the mops and broom in the kitchen and was in heaven.  He loved waiving to all the people in the house and I can tell he won't hate living here after Owen gets his heart.

They were serving dinner just as we were winding things up so I grabbed some food for Mr. L. He only ate the cupcakes and ice cream bar and made a massive mess.  Oh I missed this silly boy!

These girls are the greatest and kept Mr. Owen so happy.  This morning he said "not to be rude to you mom.. but you aren't nearly as fun as Kam and Ry are." 

I can't disagree.  I missed this fun girl too.  We were snuggling Logi until he ditched us.

The kids loved coloring on the giant window.  The markers kept Logi busy for a while.  Now he's going to go home and color all over the walls and windows.  Oy.

Owen had everyone racing his cars around... he loves those cars.  I need to start a foundation where people donate remote control cars to all the kids in the hospital.  It was a Genius idea Allison!  I just noticed how blue Owen's legs looks when he stands...note to self to put pulse ox on next time he stands to monitor that.  Hmmm.

Everyone is happy to be together.  The girls are enjoying what's left of their summer break.  They just got their schedules for next year and Kam's schedule is gonna be a challenge but she got great teachers.  The kids went back to the RMH to sleep last night with Larissa.  Owen had a PICC line dressing change and we had to switch out his pumps.  We both slept ok and were ready for another day with the fam.

Owen remains stable.. we continue to wait... having fun while the days pass by.

Spoiled

It's time for an Owen update. I spent the last two days processing the passing of my Nana and am very grateful she had such a wonderful, LONG life.  Being in a children's hospital puts things into perspective and you quickly realize that not all of these little ones make it home.  Many of our heart buddies are struggling right now and it hurts to the core.  We pray daily for their comfort and continued bravery.

Owen continues to do well!  His levels are all spot on.  His ANC (neutrophil count) is rising slowly.  He is staying healthy and getting stronger everyday.  He is gaining weight and tolerating some food.  He snacks a little throughout the day and chugs his water.  I sat down with one of our transplant cardiologists yesterday and we came up with a gtube goal.  We have been trying to push his little tummy and he started puking... not what we want.  So we decided to keep things consistent and so his INR (anti coagulation level) stays stable, we will set a daily goal and go up slowly from there.  So he is just getting 200mls a day via Gtube and the rest is oral intake with TPN/Lipids.  He has no restrictions.  He felt a million times better yesterday when we didn't push him.  I am glad the team trusts me and we work well together.

Our Fourth of July had no fireworks or bbq that we are used to... but we had a quiet day together and I can't ask for more than that.  We played race cars and watched movies.  Yesterday we built legos and he let me run out to the store while he napped.  The wait continues, but I have a feeling it won't be too long.  Maybe it's just wishful thinking on my part. 

We couldn't ask for a better outcome right now from his cardiac arrest six weeks ago.  Can you believe it's been SIX weeks?   Unreal!  Time just passes us by.

These kids had a fantastic 4th and I can't wait to hold my babies in just a few hours!!! We have a busy week of fun planned with Dad, Sis, Logi, Ry and Larissa.  I'll have plenty of fun stuff to post about.  I feel spoiled with blessings!!