Living Life

We have been so busy getting things done around here.  I feel like I am in constant nesting mode and I can't slow down.  We are in the thick of applying for a new home loan, trying to find Kam a car, and getting caught up on three months of being gone.  There were piles of mail that I had to go through, call on and shred.  Closets and drawers need cleaned out because everyone has grown and the seasons will be changing soon.  I cleaned out my bathroom drawers/sinks and found 8 bottles of sunblock.  It felt good to donate and discard of so much stuff.  You can walk through our closet now and find anything!  The pantry, the fridge, the garage... it just all built up.  Carson was so busy working and keeping things moving around here that he didn't have time to do the organizing and decluttering. It feels so good to be home!

Both boys got their teeth cleaned and Owen has his first two baby cavities ever that were probably due to the long intubation.  Now I have to find a dentist that is contracted with the hospital to do his dental work under anesthesia since they can't do cardiac kiddos in the office.  Logi loves to brush his teeth but was not thrilled with the first dental experience.  No photos because I was wrestling a giant crocodile (er.. 20 month old).  Kam has her orthodontist appointment to check her retainer and thankfully it was a 5 min check.

Owen got to have a dance party with Gigi and Grandpa made his favorite ribs with spicy bbq sauce!  Owen called it a "feast" and loved it so much!  Logi ran circles around them and we were all laughing hysterically at Owen's dance moves.  It felt like life was "normal" again.

Owen had labs on Monday and his levels are super high.  His Prograf (anti rejection) level was up to 13 and range is 6-8.  His INR (anti coagulant level) was 4 and range is 2-2.5.  We drew labs again this morning and he was such a champ as always.  His poor body is covered in bruises and his veins are all bruised so we had to use his hands.  The infant heel warmers worked super good on his hands.  We spend so much time at the lab and Logi just runs around and entertains the other people waiting. 

Since we were busy poking Owen for labs, we figured we would go get Flu shots at the Peds office.  Logi caught up on his vaccinations too.. so it was a win win.  Logan doesn't really care about the shots and whimpers for a whole 2 seconds.  Owen spent 30 minutes negotiating where the Flu shot should be injected.   Kam was a rockstar and is just happy she  is old enough to donate blood now and they do a blood drive at her school during lunch every other month.

Kam got her license while we were in Palo Alto so I haven't driven with her in forever.  She has been driving a ton and I'm not nearly as terrified as I was.  I guess it does gets easier.  She has been looking for a car and that is our goal this coming weekend.  Find A Car!  We only have one car right now and it's super fun to share but I would like my car back.

 

I couldn't wait to get my hair done.  Kam and I went yesterday and tt felt so good to get my color refreshed.  We caught an Uber home so Carson didn't have to drag the boys out.  Owen gets super tired and worn out in the heat.  He just can't tolerate doing too much of anything.  I'm so glad the weather is cooling down.

I just booked out next trip to Stanford for October.  We have big decisions to make in the upcoming weeks.  Owen is staying stable and healthy.  I just turned in all the paperwork to start Homebound school for Owen.  He isn't as excited as I am about school starting.

 He doesn't have many friends his age... but has lots of cousins.  A teenage neighbor came by yesterday to play games and Minecraft with him on the PS4 and he loved it!  He loves to have people over to chill with him.  If anyone wants to come hang with Owen, play games, eat snacks... he would love it.  I guess he is tired of hanging with me. :)

 

We are so happy to be home!!  Owen is status 1B and we have life flight all set up. Meanwhile..I continue getting things prepared here.  Looking forward to a productive weekend!

HOME

A few days at HOME and I am exhausted.  It is wonderful to be home and we are finding a new routine.  Before leaving Palo Alto on Tuesday, we had early morning labs and a quick clinic visit with the transplant team.  Owen looks good and we made our way to the airport.  He kept saying "I didn't think this day would ever come!" 

Pure happiness as we made our way through security and boarded our plane.  We did have the added drama of United Healthcare deciding last minute to DENY his life flight from Phoenix to Palo Alto when his heart offer comes.  They'd rather pay for him to be inpatient than to cover a flight.  Unreal. Because of this nonsense, we had to make Owen inactive on the transplant list until we got things approved.  It's actually been a small blessing because I can breath for a day or two and not stress getting "the call".

Owen had clinic with his Phoenix Transplant team on Wednesday, bright and early.  His echo looks really good considering what his heart has been through.  It's still very sick, but good considering.  Dr Z got a new baseline on Owen and we will be followed bi weekly and head back to LPCH in one month.  Of course they all hope we will have a heart by then.  We'll see.  I think that everything is in God's hand at this point and we are just trusting the process.  I am just in awe of the miracles that have happened in his life so far.  We lost a heart buddy this week to something VERY similar to what Owen just went through from the CAD.. but he didn't recover from the arrest.  Pray for this boy's family.

Logi is thrilled to have his big brother home!  He is the most active, sweet, full of love baby ever!  He loves his "mamamama" so much and has been totally clingy (as expected).  I could use a little less clingy at 2am, but he missed me so much. 

Kam is getting to be a teenager and not a "mom" for now.  She loves on Logi and Owen but then can go be a teenager too.  She has taken on a big load while I was gone and I she deserves this break!  Carson is loving having us home as well.  Nothing like getting your wife back ;) 

Life is perfect.  We are so grateful and happy!  Owen is relisted as of now and we have life flight all set up.  We keep hearing that things could happen SOON from the team.  You never know so we are not stressing it and just choosing to live life.  Thank you all for the prayers, support, donations and meals!  It has been a lifesaver for us!

Weekend Together

We broke free!!  On Thursday afternoon, on our 100th day inpatient, Owen was discharged.  Carson, Kam and Logi met us at the hospital and we were outta there.  This weekend has been wonderful in every way.  Being together as a family of five, out of the hospital, has been the biggest blessing.

We got settled into the hotel, moved out of the RMH and took a long afternoon nap.  We had CPK for dinner, walked around the mall just a bit and went to a small little park to play before heading back to the hotel for the night.

 The next morning we headed out to find Owen some new tennis shoes.  His feet have grown so much and his poor gait is pretty weak.  We had the Creamery for lunch and followed that up with a two hour nap at the hotel.  Friday evening, we went to the Magical Bridge park and listened to music in the park while the kids played hard.  This park is incredible and made to accommodate all special needs kiddos. 

Logan went up and down this slide hill a billion times.  Owen got tired so I carried him up most of the time and he went down on his own.

We found a little bakery for soup and sandwiches for dinner before calling it a night. Another perfect day in Palo Alto.

Saturday was a get er' done kinda day.  I had to go to a billion stores.  We relaxed in the hotel a lot and watched too much tv while snuggling.  We made out way over to the mall to eat on the patio at Max's and called it an early evening. 

This morning we headed to Pacifica to play with some friends.  Allison is being super generous in letting me store a bunch of blankets, pillows and things we will need when we come back for transplant.  Josh, Sam and Owen played at the park together until Owen was just exhausted.  The weather was chilly and overcast... totally out of our norm and it was beautiful!

We had to call it an early afternoon so we had time to pack.  Owen has been begging for Olive Garden breadsticks since we got here, so we made a special trip on our way to the airport.  It was hard to say goodbye to Kam, Logi and Daddy again. :(  We will see them again in TWO days, but it didn't make the goodbye any easier.  It was hard coming back to the hotel without them this evening. 

Logi missed his mama madly! He wouldn't let me out of his sight and kept saying "mamama" while grabbing my hair and smooching on me.  We snuggled in bed every night.  Two more days!  I can't wait to give more time to Kam and Carson at home.  I can't wait to cook, do dishes, throw in a load of laundry and be present for my entire family.  Two more days!!!

Owen and I have a busy Monday and Tuesday.  Prayers that he remains stable and that we learn his new norm.  He is great at self regulating but you can tell he wants to do so much more than his body can handle.  We are so grateful for the past weekend we had with our family and even more grateful that we will be reunited at home very soon!