ReActivated on the Transplant List

I just got a call from LPCH confirming that Owen is officially REACTIVATED on the transplant list!!  Back to freaking out each time the phone rings.. back to keeping up on the laundry.. back to preparing for the unexpected.  Owen is listed as a Status 2, and continues to be the only one in his size, in our region, that has B blood type.  He has six months and counting on the list.. or 28 weeks or 196 days to be exact.  He continues to feel better and spent a good hour "shopping" Amazon this afternoon.  My shopping cart is full of Superheros that will go to the Amazon "wish list". 

When we picked up Kam this afternoon, she looked awful. Her eyes were bloodshot and she looked exhausted.  She was starving, so we stopped at Sprouts for some fresh produce and a sandwich.  She ate so much and came home to crash.  She said they ran the mile in PE {7th hour} and she was sneezing and had a runny nose ever since.  I loaded her up with some Allegra Allergy and she got a late afternoon nap in.  We are expecting a big rain storm in the next few days so hopefully that will help get the allergens out of the air.

Only three days until SPRING BREAK!!!!

My Boy Is Back!

This silly boy has turned a corner! His color is so much better, he has a little energy, and for the first time in over a month he is playing with his toys.  Last week, I was a nervous wreck after seeing him struggle and be so sick for the past month. His RSV symptoms {cough, runny nose} only lasted one week, but it took a toll on his lungs and sats for longer.

 By about Wednesday afternoon, he started telling he he was hungry often throughout the day.  I gtube feed him a blended diet of about six ounces every 90 minutes all day long.  He has never tolerated more than the 6oz volume and would usually puke it up immediately afterwards.  I was giving him snacks like crazy towards the end of last week.. cashews, carrots, beef jerky, almonds.. but he would only eat one and say "I am so full!"  Then 30 minutes later, ask for more.  On Friday afternoon, I decided I would try to increase his tube feeds again and started with 7oz... he did great.  I bumped it up to 8oz by his last feed of the day and I already saw a difference in his energy.  By Saturday afternoon, he was digging in his toy boxes, wanted to wrestle, he had his binoculars out to go on an adventure and my boy wanted to PLAY!!!  This was the first time he wanted to play in over a month.  It was wonderful!!

On Saturday evening, I was getting ready to meet a few friends for dinner and I told Kam to start the grill so I could make them some burgers before I left.  Owen said "I don't want burgers.. I want chinese."  He made it a point that if I was going out, then he was going to have take out!  So I ran and picked up some Chinese for my clan before heading out.  How could I say no?

On Sunday, he woke up before 7am ready to play.  My house was a disaster filled with toys everywhere!  It was so great!  I didn't even bother cleaning up for most the day because I was just so happy that he was back to himself.  He still wears out easily, so we stopped and watched a movie, took a short nap and played some video games, but it was a HUGE improvement.

Before we went to Grammy K's new house for dinner, Daddy cut Owen's shaggy hair and he looks so good.  His color is better and he just looks like he feels better.

In conclusion.. did his body simply need more calories to help recovery from the RSV?  He was already getting about 1800-2000/day via Gtube, but apparently he needs more.  He has gained weight steadily on his old diet.. so I can only imagine he's going to grow like crazy with 500 extra calories per day.  Maybe it's a growth spurt??  I don't know.  I'm glad we'll be at Stanford on the 14th to do a full workup. 

I called LPCH this morning to give them a little update and to find out when he'll be reactivated on the transplant list.  Can you believe it's been FOUR weeks??  Hopefully he'll be Active on the list by tomorrow afternoon!!  I hope so.  They have a conference in the morning and will discuss it.  I also requested a consult with the nutritionist and a full set of labs to be done at his next IVIG treatment on the 18th.

I am so glad our boy is feeling more like himself.  Now that I see him feeling better, I realize how down and out he was.  Scary!  He's still moody, he's still tired, he's still blue.. but SO much better than he was.

Kam has only one more week til Spring Break... SO EXCITED!!!

Crossroads

This week I have been laying low, doing a lot of thinking, and networking with other heart moms that have been where we are in the transplant process.  I feel like we are hitting a crossroads.  A point where a decision needs to be made to allow Owen to continue waiting at home, listed as a status 2.  Or making the decision to start giving him an IV medication, Mirlinone, that will help give his heart a little rest.  Milrinone is magical and can really help Owen feel better as a bridge to transplant.  When a patient is on Milrinone, it also bumps their listing status to 1A {top of the list}. 

There are pros and cons to each path we take, but I feel like we are almost to that crossroads and the ultimate decision is mine.  It a heavy burden to carry and I want to make the right decision.  I know the transplant team relies heavily on my accounts of Owen's daily activities, struggles and mood.  I am the one that manages his heart failure on a daily basis and so I am the one that would know best.  It's just a hard decision.

Yesterday, we got outside and spent a while at the park. The weather was fantastic at 70 degrees and sunny.  Owen was on the swing for a good hour.  Kids came and went.  I watched them run around, ride their bikes, roll down the grassy hills, and climb all over rocks.  My heart told me that it's time.  It's time for Owen to get his chance at really living life!

Owen swung high, he lost his flip flops about a million times, he talked to the other kids that came around.  He is very competitive so when a little girl was swinging higher next to him, he had me push him higher.  See the oxygen leash in the picture above.. he can't go as high as he wants because of that.  Ugh.  Everything has a limitation.  Some days he looks so tired.. like this picture.  Yesterday wasn't one of his best days and the day before that was an emotional one for him.  He said "my heart is tired."  But I don't know if it's his 5 yr old temperament, or if it's really his heart. 

My sister brought Liv to meet us at the park and she sure loved the ducks!! 

Owen didn't do any walking yesterday, just hung out in his stroller, which isn't unusual.  He had fun throwing bread and watching the ducks fight over each piece. 

Here is the picture of our new LDS temple from the park. It's almost complete.

Last night was Kam's Spring Orchestra concert.  The 7th and 8th grade orchestras did a phenomenal job!  This is just the 7th grade!!  I loved when their teacher stood up and said 98% of these kids signed up for 8th grade orchestra next year.  So cool!  They also had the high school orchestra perform a couple pieces for us that were so awesome.  Owen fell asleep half way through, but it was so relaxing and quiet I could have done the same thing.

Last night Owen sounded congestion.. sigh.  His sats were in the high 60s while sleeping, so I was up worrying.  This morning he was back to his baseline, and has had a good morning thus far.  He looks better today, more rested, and is playing Skylanders.  We are headed to the park in a bit, but I wanted to update today.

I have spoken with some wonderful heart moms.  The best I can do right now is to prepare for anything.  Owen should be activated on the transplant list sometime next week, assuming he has no congestion and his RSV is gone.  I am spending our weekend getting the car serviced, cleaning house, organizing closets, and donating toys.  I really want to have the house in order before our March 14th trip to Stanford in case we do decide to stay for a while.  I want life to be as "normal" as possible for my two loves at home.

Happy March!!