Catch Up and Relax

We made it through the first week of school. I will admit that it was easier than expected and we have gotten settled into a new routine around here. Kamryn couldn't be happier. I have heard every single detail from her school days, including who takes the most bathroom breaks, who sits by whom, what project she started in art, that her friends named their tree "Lydia" this year, and so much more. Owen and I look forward to picking her up from school every day. Owen squeals with delight when he sees her. Then we listen very quietly as she tells us all about her day on the way home.

Kamryn's teacher is amazing and even sends emails telling us what they learned that week and what they will work on next week. I love to be a part of her educational experience. I got a second email from her teacher stating "Kamryn is delightful, sweet and such a great girl!!" Ahhh... I'll take a little credit for that.
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We chose to relax this weekend, made no plans and enjoyed time together. It has been wonderful! I only took a few pictures this weekend. As you can see, the kids are lounging in our bed, in their pj's on a Sunday afternoon.

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Owen's Medical Updates

As you already know, we visited Stanford Children's Hospital back in May for Owen's transplant evaluation. Since that time, we have been increasing his medications, Captopril mostly. He was on 12mg/day (equivalent to 2.3tsp) in May. Now he is on 60mg/day (equivalent to 12tsp). We have also introduced him to Carvedilol, which is a beta blocker. These changes were made in addition to his other medications....Digoxin, Aldactone, Sildenafil, Lasix and Asprin.

We haven't taken a peek at his heart since May and have no idea if the changes in medications are working for him, or against him. His cardiac output, or the way that he appears on the outside, is great! This is deceptive though as he always looks great for having only 1/2 a heart and a failing one at that.

We have an echo scheduled for this Tuesday and I am anxious to see what is going on with his heart. Dr. Stock mentioned that maybe a cardiac cath should be in his near future, but we won't have that set in stone until Tuesday. We can only pray that the medications are working so we can push off transplant a little longer.

Some have asked us if/when Owen will be listed for a new heart. It's complicated and I will put that in his cardiology post on Tuesday.

Back to Stanford....

We had scheduled a followup visit for September 24th with Dr.Rosenthal (cardiology). During that time, I suggested that we go ahead and get Owen's Gtube placed.

He has been NG (nose tube) fed since birth and it's been 18 months. He has no issues with the NG tube and actually doesn't mind it being shoved up his nose and down his throat once a month.. a little weird, but Owen is as mellow as they come. As a mom, I feel it's time. He only has the stamina to eat a few bites at a meal and because his heart doesn't work properly, he needs more calories than the average 18 month old. So not only does he not have energy to eat what a normal toddler needs to grow, he needs more calories. I still give him 100% formula feeds in his tube (and his medicine which is a blessing), but I also let him eat all the solids he wants by mouth as well.

Anyway, we have been working to get the Gtube surgery scheduled for the same time we are there for cardiology in September. It should be simple, right? Well, they can get the surgeon, but not the cardiac anesthesiologist. Then it worked out that Dr Rosenthal won't be in on the 24th, so they moved his appointment to the 23rd. Then they can't do the gtube surgery until October 1st. Yikes, that won't work.

Long story short, or at least shorter...

I'm going to put everything on hold until Tuesday. We'll figure out what Owen's heart is up to. If he needs to go to the cath lab, then do we do it in Phoenix or at Stanford. If we are going to do the cath in Phoenix, can we just schedule the Gtube surgery for the same day and get it done with one shot of anesthesia. OR, if we are going to do it all at Stanford, can we schedule it all at Stanford within a few days of each other. So many questions... no answers until Tuesday. Until then, I will patiently wait.

Now you know why a relaxing weekend was necessary.