Pictures, Dentists and Docs

We woke up bright and early this morning for the kids teeth cleaning appointment. I had great plans to get Owen's teeth cleaned for the first time today. As soon as we got in our room, Owen puked all over his stroller. As I was cleaning out his mouth before the dentist came in, I found a stash of peanut m&m's in his left cheek, stored there since last night. Awesome. The dentist came in and Owen went into hysterics. Owen doesn't scream like that... ever!! More on that in a second. After I snuggled him for a second, he let the dentist take a peek at his sparkly white chompers. "They aren't perfect, there is some crumbling, but there's not much we can do right now." With all the puking, cardiac meds and anesthesia, his teeth are just not in perfect shape. We do brush them all the time, but apparently he's going to need some work as he gets bigger and that's usually done under anesthesia at the hospital. Until that day, in the distant future, we will continue to brush and be thankful they are baby teeth and will eventually fall out!
Kamryn, on the other hand, had perfect brushing skills and zero cavities. She has never had a cavity and I can't be more proud. I remember going to the dentist as a kid and there was always a few. She has some loose molars and some upper teeth are finally wiggly. You have no idea how bad I want to slap some braces on those little chompers of hers, sooner rather than later.
The other day, after school, I told the kids that I really wanted to run outside and snap a few photos of them. Real quick. All they had to do was smile for me and we'd be done. Easy. The joke was on me. Kamryn had a meltdown and didn't want to have her picture taken. I have NO idea how hard it is to be at school all day and all she wanted to do was relax. I was torturing her. Here's proof.

Then I made her smile and got this beauty out of her! Then she apologized for being crabby and gave me a huge hug. Can this girl get any more perfect? I think not.

Owen was thrilled to go outside and smile for me. He has this new crinkle-nosed smile that cracks me up. He doesn't realize that it makes him look like he's snarling at me and he probably wouldn't care much either. Mister Owen.. you are HILARIOUS!

Earlier in the day, we had gone for a quick visit with Dr S.,Owen's GI doc. I keep saying that I am never going back to him. This time was the last straw. After Owen was weighed, measured and we were done talking about puke and poop, the doc reached towards Owen and started stabbing at his belly. Just like that. No warning, no talking to Owen first, no asking me if it was okay to touch my child... just started poking and pushing on his tummy. I lost it and then he said "I don't know what I did to upset him!" Seriously? Really. I really need to get a new GI doc.

I'm pretty sure Owen freaked out at the dentist today because he had such a bad experience the other day at GI. Poor kid. As soon as he realized Dr Welch (dentist) was a "good guy", he showed off his crazy snarly smile for him. Dr Welch also said not to worry about the binki for now... he agrees that Owen needs it for comfort during surgery. So.. we'll keep the binki until surgery is over, then it will miraculously disappear.. hopefully along with the oxygen.

I finally got everything scheduled at Stanford. I called back to schedule his ECHO and pre-op appointments because I just knew someone in the Cardiac MRI department would drop the ball on that, and they did. I still haven't heard back from Dr R.'s office on whether or not Owen needs a Cardiac followup, but I am going to purchase my airline tickets today and I figure they will squeeze him in if necessary.

I can't believe it's already Thursday. We said Goodbye to our favorite Speech Therapist yesterday and she set him up with another amazing therapist. Our new ST called and said she has ASU Graduate students come out with her each week and wanted to make sure Owen would be okay with that. Are you kidding? He's going to eat up all that extra attention each week.

Kamryn helped me with the new blog look. I hope ya'll like it.

Drop Out

I feel like such a loser. I just couldn't do it right now. I gave 100% effort that first week, but it nearly took me out. Chemistry and Biology got the best of me. It's official... I dropped out. I don't want to have my nose stuck in textbooks for the next eight weeks. Then again, it's only eight weeks and I'd be done with those two classes standing between me and my nursing school application. The timing is just not right. It doesn't feel right. I'm going with my gut on this one.

I've dropped out.

I'm not sad about it. There's always spring semester.

Weekend Crafts

This is hopefully our last weekend with over 100 degree temps. It certainly cannot remain this hot going into October, it just can't! Carson ran to the store on Saturday morning for some Excedrin and came home with a haunted house kit. We ate donuts and spent three hours at the kitchen table building this masterpiece. The kids LOVED it!!! Carson and Kamryn like to spend time on the tiny details... like creating spider webs in the windows with the hot glue gun strings. Owen and I like to just get' er done and stuck the shingles on the roof and leaves on the tree.
Kamryn and I still had an itch to craft so we decided to make these little "BOO" frames to hang on the wall. I got the idea from my friend Sandy and you can find the instructions here. I think they are so cute and can't wait to make some for Christmas. Kami and Owen loved to get their glitter on... and I'm sure I'll be cleaning glitter off the floor for a few weeks.
I'm off to spray paint. Kamryn has to make a Caravel for Explorer's Day at school. I have no idea how we're going to make it yet, but I'll start by spray painting the water bottle boat hot pink! We have plans to use some epoxy, sparkle rocks and then we have to figure out how to make the sails stay up. Ha. I'll post pictures of that tomorrow.

MRI and Surgery Consult

After several days of attempting to get things scheduled and leaving messages for the "people in charge" of scheduling,... I finally got lucky! Owen is scheduled for his Cardiac MRI for December 9th and we'll consult with Dr Hanley on the 10th. I'm going to be a ball of nerves leading up to these appointments as they will set the stage for what's to come.

Starting the new year with multiple open heart surgeries? Or do we continue moving forward with heart transplant?

I'm so grateful for the distractions of my two favorite holidays between now and then. I can't believe it's officially FALL. It's 105 degrees today, so it hardly feels like fall, but it will cool off with time.

Now Owen has something to say..

w G QW N kkkwx c wb g jh hkhkhbcbenzsk h hh

He loves to say "My DO Momma... peas peas peas?!?" and I can't say no to that.

Have a great weekend. We have some fun projects were working on this weekend and I'll post the finished products on Monday (or sooner).

Higher Education and Craziness

Higher education... what was I thinking?? After only four days of my nose in a textbook reading about evolution, the elements of chemistry and metric conversions, I feel completely underwhelmed. I don't want to be reading chapter after chapter in a Biology text book, I'd rather be playing with Owen. So I took a break for the day and I'm going to decide if I need to postpone school for a few more months. Sigh.

Owen discovered the Webcam on my laptop what he thinks is his laptop. Kamryn, Tatum and Owen made a video just for your viewing pleasure. You might need an Advil after watching it, but it's so much better than reading hours of Chemistry. Trust me on this one.

Untitled from Andrea Simmons on Vimeo.

Cardiology and Happenings

I can't believe it's been five days since my last post. I have been a busy momma. I finally got our luggage unpacked from our trip to Stanford, all the laundry is clean and put away, and I am ready to start school today. Which raises the question.. why am I not studying?? I'll answer that at 11pm when I'm tired and forced to read the first bazillion pages in my Biology textbook. Procrastination is my middle name.

I can't believe that it should be fall, but the weather is still in the 110 degree range. I'm sick of being sweaty all the time and will be happy for fall to make it's way to the desert. We already have so many plans for the rest of 2010, and we couldn't be more excited! I suppose planning all our fall adventures is another reason I haven't been blogging the past week.

A few days laying on the beach in San Diego sounded too good to pass up and for under $500, I'm going to make it happen! My Uncle reserved a huge cabin up at Mormon Lake for our entire family to frolick in the woods this November. Another trip to Stanford, hopefully scheduled in December, will be a nice getaway to see San Fransisco at Christmas time. Yes... lots of planning on my part and so excited to do it!

But first... today was Cardiology and Kamryn's school picture day. We had an early morning at 6am, but I am proud to say we were out the door by 7:30! Kamryn looked as cute as pie in her new "picture day clothes". Owen was excited to "do to dotor."
Dr S. was thrilled with his cath results and had already conversed with Dr R. (from LPCH). He seems confident, as does Dr R., that Owen could in fact become a good candidate for the next surgery. Gosh.. I hope so!! We looked back on Owen's 2008 cath results and it's just insane how much better his pressures are. Even in his right atrium, where they should be higher due to the back flow of that leaky TR valve, they remain low. We are anxious to get the MRi and see what miracles the surgeons can perform.
I called today to schedule the MRI and surgical team meeting for the first couple weeks of December. The airline tickets are affordable after Thanksgiving, but before Christmas. My hope is that surgery will be an option and then I can tentaively plan a surgical date for the first week of February. Why not January? Kamryn and Owen will have their birthdays and we wanted to plan a fun trip to Disneyland to celebrate!!
Overall, Owen is doing fantastic!! His energy levels are good, for him, and he is playing on his feet more. He is tolerating his feeds more and he is talking up a storm! He still takes a two hour nap each afternoon and wakes up telling me how great he feels. He wants to get OUT of bed and out of the house. I can't even begin to say how happy I am so see him doing so well. He is still on at least a liter of oxygen to maintain 75-80% oxygen saturations, but he gets less blue when he is playing. All things positive!!
We are so lucky that things have gone so well up to this point. I can't help but be so grateful that I followed my gut instinct and got an opinion from Stanford back in May 2009. At the time, we were getting transplant care at UCLA and it didn't feel right. Owen was undergoing Chemo (Revatio) and IVIG treatments for his antibodies and they were somewhat close to listing him for a heart. Something was nagging at me to get another opinion from Stanford and I'm so glad I didn't look back!
I can't believe this little guy is only 4 months away from his 3rd Birthday!! I never could have imagined being so blessed when I was pregnant and the doctor told us, "there are no guarantees that he will make it, but you are young and you can always try for another." There is no other Owen.. there never could be. He is one of a kind.

Surgeon's Recommendations

I got a call from our NP at Stanford this evening....

They were able to present Owen's case to the surgeons this afternoon. That was fast! Dr Hanley and Dr Reddy both agreed that they would like to see an MRI of Owen's heart and specifically his Tricuspid Valve Regurgitation. They are concerned that going forward with the Fontan, with the valve how it is, would put too much workload on his right ventricle.

They would prefer to do an open heart surgery, on bypass, to try to repair some of the Tricuspid Valve Regurge and see if that will increase the function of Owen's heart before going forward with a Fontan.

Yes. That makes two open heart surgeries in the next six to eight months.

Carson and I have requested to meet with both Dr Reddy and Dr Hanley in person to speak with them regarding their plans, the risks vs the benefits and get a feel for which Surgeon we feel more comfortable working on Owen. We also have MANY questions!!

An obvious question is ... how risky is it to put Owen under two major open heart surgeries that close together? If that Tricuspid Valve surgery doesn't produce great results, are we back at square one for transplant? On the flip side... if the Tricuspid valve surgery does produce desired results, is Owen then a definite GO for the Fontan?? If not, is it worth putting him through the surgery to work on the valve in the first place?

We have a lot of questions and we know we'll get our answers in time. The next step is to call scheduling for the Surgical team and see what their schedules are like. Then I will contact Dr Rosenthal and have him schedule the MRI for the same week as the Surgeon "interviews".

If anyone has any advice or has had the pleasure of working with Dr Hanley or Dr Reddy... please give me any and all advice!!!! We need all we can get right now.

The Nurse Practitioner also brought up a valid point... if we schedule the MRI and Surgical consult soon... they are most likely going to want to plan the surgery soon. Owen is currently "stable", so we could technically push things off until after the Holidays. But then again.. what if something happens before then and we don't have a game plan?

Is it better to put Owen through a surgery when he IS stable, rather than waiting for him to become sicker when he would really need it?

Another huge issue is that Dr Pearl (Owen's Cardio Surgeon that did the Norwood and Glenn) had attempted to repair the Tricuspid Valve during the Glenn operation and the outcome was almost him not making it out of the Operating Room. I will never get that day out of my head.

My head is obviously spinning with questions. For the past two years we have mentally planned for Transplant. That was our only option. Now we are faced with two very risky surgeries and transplant may still be inevitable.

I know that things will work out. They always do. That doesn't change the fact that I am scared speechless.

Home...

It feels so good to be home. We flew in on Saturday evening and were greeted by a very happy 10 year old who was full of stories!! She had just come home from a trip to the cabin with her cousins and she had a ton of fun!

Our bags are not unpacked. The laundry is not done. My head is spinning with medical information. I need to stop reading up on the risks and benefits to the Fontan and wait for the surgeons to call us in the next couple of weeks. I'm sure speaking with Dr Stock at Owen's appointment next Monday will help me clarify some questions. I need to just let it be and stop stressing.

Speaking of de-stressing... I am planning a trip for fall break right now. We need a family vacation without pokes, needles, hospitals and doctors visits. We are going to lay on the beach, drink fruity drinks, maybe build a small bonfire, splash in the waves, dig in the dirt and eat some yummy Mexican food. I just got an email offer for our hotel on the beach for a deal I can't refuse.

Time if flying by so fast in 2010... we'll be on the beach before we know it.

It's good to be home for now.

Fontan vs. Transplant -- Options

Owen was discharged just in time to head downstairs for cardiology clinic. He is requiring a little less oxygen than pre-cath, but is still on 1/2 to a liter of O2.

Dr. Rosenthal was once again thrilled with Owen's cath results. As I mentioned yesterday, Owen's pressures are amazing and they have remained great for over a year now. His heart function and leaky valve have remained the same during that time, which is why we keep hearing the word "stable" to describe his condition.

Dr Rosenthal still believes he is doing too well to list him for transplant and his overall opinion is to buy as much time as we can with Owen, and treating transplant as a very last option.

With that said, he feels that Owen may be a good candidate for the Fontan afterall.

Background: We were told in Oct 2008 that Owen was NOT a candidate for the Fontan due to his high lung pressures, severely leaky valve and heart function. With a lot of medication therapy and oxygen, his pressures have significantly dropped and maintained themselves over a year now. This bringing on discussion of the Fontan again.

Doing the Fontan would come with it's own set of risks and we could have three possible outcomes.

1. A successful Fontan could buy us more time with Owen, three to fifteen more years, before having to go forward with transplant.

2. He could have the Fontan and things might not go well long term, requiring a heart transplant soon thereafter.

3. The Fontan could go terribly wrong and his little body won't be able to handle the new lung pressuresand he would no longer be a candidate for a transplant. Obviously, this would be a worst case scenario, but it is a very real risk.

Owen is most likely outgrowing his Glenn anatomy and that is resulting in his low dips in oxygen saturations. He is in the weight bracket at 30lbs for the Fontan and so we wouldn't have much time before making this HUGE decision. Dr R. said it would most likely need to happen in the next 6-8 months.

Heart Transplant is another decision that comes with huge risks and there is no guarantee that his little body will accept his new heart. That, along with his highly sensitized antibodies, could cause long term rejection complications.

We have some serious decisions to make over the next few months. Dr. Rosenthal is going to present Owen to the board of cardiothorasic surgeons at Stanford next week. Dr. Hanley and Dr. Reddy are miracle workers and we can't wait to hear their opinions. If they feel that Owen is a good candidate to go forward with the Fontan, we will fly back to Stanford to meet with them face to face. We need to weigh the risk and benefits of putting Owen through another surgery.

Another huge obstacle is Owen's leaky tricuspid valve. In order to work on this valve, if the risk isn't too high, they would need to put Owen on bypass to try to fix it. They would not do this at the time of the Fontan because the risk would be entirely too high. Instead, it would require yet another open heart surgery with no guarantee of a good outcome.

We left our appointment today with many options and a little guy that is doing better than when we brought him here a couple days ago. We are glad his pressures continue to remain perfect and that we are blessed with options, beyond transplant. We will not make decisions without a lot of research, risk assessment and praying that we do what is best for Owen.

We continue on a rollercoaster ride and I'm sure it's not going to slow down anytime soon.

Settling In

Owen's cath lasted three long hours. Dr. P (cath lab doc) came in to speak with us and said that his pressures are amazing. They always are! They are really great. So great that they are ideal for the Fontan (the 3rd stage palliative surgery for HLHS).

Owen's problem is his severe Tricuspid Valve regurgitation. This is what causes him to be so tired all the time. It is creating a lot of work for the right ventricle and it's the only ventricle he has. His heart function (or squeeze) is moderately decreased, which is about the same as always.

There were a few big collaterals that were coiled around the heart. That should help with his oxygen saturations a little. Time will tell. There are no answers as to why Owen needs oxygen. His lungs are beautiful, his pressures are great, his pulmonary arteries are perfect. Owen is a mystery.

We went straight to recovery to see our little buddy and he was NOT happy. I can't blame him with an iv in his hand and foot, compression bandages on his neck and groin from where the catheter was inserted and a dry throat from the breathing tube.
A few hours later, we are settled into a private room in 3 West. Owen is chowing down on french fries, fish sticks and salad. It's crazy how much he can eat when he's hungry!! He can't stop eating!
We should get discharged tomorrow, hopefully on less than a liter of oxygen. So far, he can't go below a liter without desatting. Bummer.

We just got word that we have another cardiology clinic tomorrow. Echo, chest xray and we will then sit down and chat with Dr. R. (heart failure/transplant cardiologist) and hopefully get some answers.

Cath Time

Owen is finally in the cath lab.

The morning started at 5:30am. We had cardiology clinic at 7, including his echo and ekg. We moved over to pre-op and then to the cath lab by 11. We still haven't seen Dr R, and are not sure when/if we will today.
Owen was delightful all morning long. We passed on the pre-op medication to make him loopy because he's never needed it in during past caths. My heart broke when he freaked out, and I had to pin him down while they gassed him. It was awful and I hate that it's getting harder the older he gets. I am so sorry buddy. :(
I'll update again as soon as we hear the results and a plan of action. I'm sure Owen will be as miserable as he always is post-cath. He has to lay flat on his back for six hours so that he doesn't bleed out. I can't hold him and console him. I hate that part the most. I requested a big boy bed, so I can climb in and snuggle him. I am going to go to the cafeteria and get the biggest slice of chocolate cake I can find and that should make me feel better while I wait. That... and this picture of my little hip hop dude!

Cardiac Cath... A Day Early.

Breathe. I need to keep reminding myself of this.

Owen's Cath was bumped up a day early.... tomorrow at 7am!!!

Breathe.

I have been going a mile-a-minute since Tuesday afternoon. Owen was thrilled to get on the "airpane!" It was easier than expected and security didn't ask for half of the doctor's notes that I was armed with. They were great!

Owen talked non stop on the flight!! I gave him a baby wipe and he cleaned the plane for at least 45 minutes. He climbed over the seats and then crashed for the last 15 minutes. We all had a smooth flight.

When we finally got to the hotel, I realized that I forget the Vitamix Blender. PANIC! That is how Owen gets 100% of his nutrtion. We ran to Target and bought a blender and tons of soft foods.

Uncle Rustyn (Carson's little bro) came down from San Fran to hang out with us for the night. Owen showed off ALL his skills and we went to the Creamery for comfort food. That's when I got the call from the NP from Stanford and she said we need to be at the hospital at 7am tomorrow.

They are going to do his echo, then clinic with Dr R. and then he'll go to pre-op and into the cath lab. Then we'll be staying the night at the hospital tomorrow. By Friday... we'll have answers.

Breathe.

Owen had SUCH a great day today. He was full of energy, playful, silly and it made me question why we were even here. Oh. But he is SO so blue. I am quickly reminded as to how sick he is. I am just amazed at how well he tolerates all of this.

Tomorrow will be a big day. I will post throughout the day and hopefully get lots of pictures uploaded. I'm off to bed. We have an early wake-up call.

Countdown...

It's going to be a long night. I am trying to pack light. I'm failing miserably. If I knew for sure we were coming home, it would be simple. Instead, I pack to stay and hope to not use half of it.

Owen has his portable oxygen concentrator, stroller, carseat, his big suitcase is stuffed, a suitcase full of medical supplies (feeding pump, Vitamix blender, syringes, feeding bags, formula), a backpack with "goodies" (diapers, books, movie player, dvds), and an ice chest full of medications and syringes of pre-blended food for the duration of the flight. Whew. That's a lot of stuff for one little boy.

I have one suitcase.

Carson has one, teeny tiny, carry on. How do guys do that??

Kamryn has her bags packed for a week full of a fun with her cousins.

I can't get the song out of my head... "We're leaving on a Jet Plane, don't know when I'll be back again........"

I hope it will be Saturday. Time will tell. We'll update tomorrow night with pictures from Owen's first airplane ride.

Wrapping up the week

This week has been more than stressful and I can't wait for the weekend to begin. It all started with the branch manager at Apria calling to tell us our insurance was no longer in contract with them and so we need to switch all of Owen's oxygen and enteral supplies elsewhere. I spent hours upon hours on the phone, getting doctors to write scripts, making numerous phone calls to Owen's two insurance companies, and getting nowhere. I screamed a few cuss words on several occasions.

Today, I got in touch with the insurance billing representative at Apria and they told me the branch manager was wrong all along and there were no issues with Owen's primary or secondary insurance paying them. My head turned all hot and I thought I was going to explode!! I went down to the branch to speak with the branch manager in person and he was "not available." Convenient. It's probably a good thing, I was fuming and I would have said a few choice words I would have regretted. I am cooled off now and I will confront him on Tuesday. Or attempt to.

I got all the of Owen's formula, pumps, tubing and gtube supplies switched over and picked up today. So that will remain with the new company. Apria's loss.

This is Owen's new grouchy face... he can't hold it for more than 10 seconds when he starts laughing.
We leave for Stanford in five days and I feel like I am finally able to get my house clean, get Kamryn squared away to stay home, and cover all my bases to take his many supplies on the plane with us. I'm actually looking forward to a little getaway from home... although I wish it was under better circumstances.

Owen has been feeling okay. He's still blue when he plays, but massive amounts of oxygen blowing up his nose is keeping him stable. He is excited to ride on an airplane next week and every time he sees a plane, he makes sure to point it out to us. He has also been spending more time on his feet. Walking is going to be slow go, but he is getting braver and stronger every day.
The best news of the day.... Kamryn got a 100% on her first math test in ALP! She skipped a year in math this year, so she never learned 5th grade math. It's AMAZING that she got 100% and we are so proud of her!!

We have a fun weekend ahead of us... cousins, birthday parties, waterpark fun, and lots of cleaning. I hope ya'll have a great LONG weekend!!