Research

I have spent some time on unos.org (national organ registry) this morning, looking at transplant data. Two of these hospitals are our potential transplant facilities.

In 2008, UCLA did 12 pediatric heart transplants... 3 in children 1-5 years of age... none of them with a congenital defect (like Owen). In fact, they haven't done a transplant on a child with HLHS since 2005.

I decided to look at Stanford Children's Hospital. In 2008, they did 15 pediatric heart transplants... 8 in children 1-5 years of age... 1 of those being HLHS and 6 others with CHD's post surgery.

I then expanded my search to Seattle Children's. In 2008, they did 14 pediatric heart transplants... 1 in a child 1-5... and that child happened to have HLHS.

On to Texas Children's for more info. In 2008, they did 16 pediatriac heart transplants... 6 in children 1-5 years of age... 3 of those with CHD's post surgery.

I found myself researching out of frustration. I have just had a pit in my stomach lately. Is it that I'm having second thoughts about UCLA? Is it the lack of communication I feel from the transplant team as of lately?

My concerns are valid. I need to know that communication is OPEN and consistent between myself and the transplant team at any facility we work with. We don't live closer than 6 hours from any transplant facility and I'm concerned about POST transplant when Owen is in Phoenix and something goes wrong. I need to know that the transplant team is available and Owen is a prioirty!

It's been over four weeks since I sent off Owen's bloodwork. We still haven't heard a peep from our cardiologist... with the exception of an email I sent two weeks ago and the reply was "nothing yet, hang tight".

I actually just left a message for our Phoenix transplant coordinator to call me so we can chat. I may have her send off Owen's medical records to Stanford. It can't hurt to check out their facility and transplant team as well... Right?

Gastroenterology

Today we had a visit with Owen's GI doc. His weight and height are "perfect" as far as they are concerned. BUT... he needs more calories, 1000 daily to be exact. THEN, don't forget he needs 1000 cc's of fluid a day. AND, make sure that he's getting enough electrolites out of those fluids. Got it. Thought you just said he looked "perfect"?

The nurse took his blood pressure, o2 sats, and then came the scale... yowza... Mr. Owen hates to get weighed! The nurse then said "OMG...he is SUCH a grouchy baby!"

Really??
Still haven't heard from UCLA. sigh.

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"AIMS TESTING IS SO AWESOME!!!"

The first words out of Kamryn's mouth when I picked her up from school today. Who would have thought that a week of testing would be so much fun??

14 Months & Making the Grades

I can't believe it's been 14 months since this silly little guy was born! Owen's personality is getting bigger each day. He constantly flashes his toothy grin and thinks of ways to make everyone around him laugh. His SMILE and LAUGH light up a room!!

Owen is weighing in at 21.5 lbs and 30". He's not crawling, walking, or bearing weight in his feet yet... but guess who mastered the BUTT SCOOT this week??! He loves to chatter... "ma-ma","da-da", "bubububobobo", "ah dun", "du-du-duk", "na na no no no", "AAAAHHHH", spitting, clicking his tongue, smacking his lips and OOOOOOOOOO how we LOVE the wet KISSES!! He loves to Clap, do "so big" and helps us do the motions to many songs. Owen has found a passion for food and will eat anything you put in front of him. If only a bite or two weren't so tiring... he'd probably eat everything in front of him too.

Our other little smarty pants just brought home her report card with all A's and 3's. It doesn't get any better than that! We are so proud of you Kamryn!! Each time Kamryn gets A's .. we reward her with a special day. Today we went to the mall and bought her some new clothes, ate on the patio at Cheesecake Factory for lunch, and now she's off at the movies. She continues to amaze us everyday!This is Mr. Owen getting EXCITED... he smiles big, then rolls his ankles, and screams!!!
And Kamryn being silly for the camera.... she's never been camera shy!
Now for a cardiac update...

We visited Dr. Stock (cardiologist) on Wednesday and of course, Owen impressed him with how well he's doing. Nothing new... Owen is in heart failure. We still don't have the antibody lab results back... it's only been three weeks!!! I've been in touch with UCLA and they are just waiting for results.

Owen's condition is so unpredictable. Two weeks ago, we were on the verge of admitting him permanently, placing him on iv Milrinone and listing him at top status for a heart. Today.. he's eating well, energetic and holding his own. We don't want to admit him and do the transplant too soon if he's doing okay at home...BUT, we also don't want to wait too long and have him digress to the point where we are running out of time.

Then there is the matter of his antibodies and those treatments. We PRAY that they are working and that the chemo is lowering them (even a little bit). My concern is that they are going to put the antibodies to sleep and then he'll get a heart and the antibodies will wake up and attack the heart. I doubt we have any other options at this point.

We're hoping that over the next few weeks, we'll get some answers. His lab results should be available soon (hopefully Monday). Then we'll head out to UCLA and get more answers. We'll be talking to LA about visiting a secondary transplant facility in either Seattle or Houston to decide when/how they do multiple transplant listings. We want to keep his donor pool as large as possible so that his chances of receiving his "perfect heart" is increased.

The reality of the situation hasn't really hit me yet. The idea of living alone, with Owen, in LA scares me silly. I can't imagine not having my rock of a husband or Kamryn to come home to each night. I don't know anyone in LA.. I don't know where I'll be living, any nurses or Dr.'s (although I'll get to know them quickly), or my way around the city. Oh.. and if a heart becomes available in Seattle.. we'll be jumping on lifeflight and moving to another city in a moments notice. On top of all those unecessary concerns, there is the medical unknown with Owen and his heart. It's all overwhelming, and so it hasn't really hit me yet, because I don't let it. Not yet.