Saturday, October 31, 2009
HOME
Thank you to my Mom and Uncle Rog for making dinner, gutting the pumpkins, and picking up the candy!! We couldn't have done it without you.
I hope you all had a safe and sweet Halloween!
Friday, October 30, 2009
Reunited
We have been busy packing, arranging oxygen pick up, and we'll hit the road at 3:30am.
Yes, that early.
We have a 12 hour drive home tomorrow.
AND
We need to get home in time to Trick-or-Treat.
HAPPY HALLOWEEN!!!!
Thursday, October 29, 2009
Discharged and Cardiology Clinic
Carson and Kamryn fly into San Jose tomorrow afternoon and we can't wait to give them the biggest HUGS!! We have the night tomorrow to visit a pumpkin patch and enjoy a FALL night in Palo Alto. We'll drive home early Saturday morning so that we can trick-or-treat at HOME on Halloween!!!
Can you see me smiling??!!!!
Wednesday, October 28, 2009
GREAT RESULTS!!!!
*Fontan is the third stage surgery for HLHS kids. Owen's heart pressures and function were not good enough to tolerate this surgery, and may still not be. Only time will tell. What this means is that, transplant could be in a more distant future!!!
After jumping up and down, and maybe screaming a little, I was brought back to recovery to see Mister Owen. He was happy until he saw me and then he lost it. Poor guy. He was so sad and in pain. He had wraps keeping his legs straight, so he didn't bleed out of the cath sites in his groin. An IV and board on his right arm, and a blood pressure cuff on his left arm.
After an IV dose of Fentanyl, he was feeling groovy. I left to go grab some lunch and found Victoria, Moriah's mom. She was so sweet to help me with Owen, push the stroller to his post op room in the "short stay area". It was great to meet you Victoria and we can't wait to meet Moriah!!
We were brought to a tiny little room that we share with patients getting IV infusions. On the way, Owen's left groin bled out... everywhere. He was in pain and screaming as the nurse was applying pressure to his already sore leg to stop the bleeding. I couldn't hold it and it was just plain aweful. He was given Motrin for pain, some chicken broth and just now started his Pediasure.
I just signed the consent to get Owen a big bed so that I can cuddle him tonight. We should have this room to ourselves tonight and be discharged first thing in the morning.
I am still smiling from our great cath results! We'll meet with Dr Rosenthal in the morning and hear the next plan of action. I'm pretty sure H-O-M-E is what's next, and in time for Halloween!!
Thank you for all your prayers and love! We met another family in the operating waiting area, their little girl, Abigail, was flown here from Salt Lake and had a pretty big open heart surgery this morning. Keep this sweet family in your prayers. It was 21 months ago, but I still remember the feeling of sitting in the waiting area during Owen's first open heart surgery like it was yesterday.
((HUGS from Palo Alto))
Cath Time
Tuesday, October 27, 2009
Palo Alto
Owen's cath was bumped up to 8am. I didn't want to sleep in anyway.
We woke up to a chilly morning here in Palo Alto. After doing a load of laundry, we ate breakfast by the pool and then relaxed on the outdoor deck of the hotel.
Today has been relaxing and stress free. It's nice to call housekeeping and have them replenish the towels, make the beds and vaccum. I admit, I am getting a bit spoiled!
Uncle Rustyn (Carson's littlest brother) is in town on business so he dropped by to see Owen. Too bad Owen crashed 15 min after he got here and slept the entire time. I'm off to wake the little guy from his long slumber so that we can go to a new little outdoor cafe I drove past yesterday. Night.
Monday, October 26, 2009
Sea World and Pre-op Update
On day 2 of our family vacation, we went to Sea World! Todd and Monica drove over to Oceanside just to spend the day with us. Kamryn has been many times, but this was Owen's first adventure.
Kamryn and Grandma Monica did the Dolphin Interaction where they did tricks with the dolphins, fed them and learned some cool Dolphin commands. Kamryn loved their "slippery" skin the most.
Their dolphin was an older momma one, but she had some splash in her.
Owen enjoyed watching the animals for about five minutes, and then just preferred babbling as loud as he could. The boy LOVES the outdoors!!
Of course we rode all the rides in the park. They added a new Elmo's Landing with just a couple kiddie rides. Don't get me started on the ride restrictions... "no oxygen, he needs his shoes on, can he walk?" We did one round and got the heck out of there.
Owen LOVED the spinning 'teacups' the most.
Elmo's flying fishies came in close second. I don't have any idea why they are called Elmo's flying fishies, but they are!
I'm still holding on to hope that things will look decent in the cath lab and we can go home this weekend. I haven't discussed 'my plan' to go home with the cardiology team yet, but we'll see what happens.
Tomorrow is a quiet day for us. I have been taking detours in my car (the GPS voice is less than happy to repeatedly say "redirecting") finding little parks and hiking trails to take Owen to tomorrow. I will finally break out my camera and get some photos of all the beautiful fall colors surrounding us!
Sunday, October 25, 2009
OCEANSIDE
On Monday, we decided to head down to the Oceanside harbor for lunch at the Crab Shack. Todd (Carson's dad) and Monica got married at the exact location 7 years ago, only it wasn't the Crab Shack at the time. We have some good memories of dancing, boating and hanging out on the Harbor from trips past.
Before Todd and Monica got married, Monica lived in Oceanside and still has her home there. It's such a friendly beach town with great food along the harbor and the beach was amazing!!!
Todd and Monica hooked us up with their timeshare on the beach and we loved every minute of it! Thanks!! :)
Kamryn loves the Crab Shack and can chow down! Here she is being her silly self.
Owen loved all the crab crackin' tools that they brought to the table. Every time we give him something that he really wants, he gets this BIG grin on his face.
And then he makes this face.
Kamryn went off to explore with Carson and came back with a bazillion seashells and "rare rocks". While they were gone, Owen and I made friends with a little girl and her mom. I love watching kids that age interact.. they don't talk much, so they just stare at each other and play quietly.
This was just the first day of our vacation, I will post day two tomorrow. Owen has his pre-op labs in the morning... which means lots of stick and needle pokes :(. I am PRAYING that he has gained some weight. The great news? He is tolerating the 30cal/ounce continuous feeds like a champ. I have him on 1300 cals a day, which is a HUGE increase from what he was at. I also shared my chocolate truffle cheesecake with him tonight.. that's got to add a few grams all by itself!
Saturday, October 24, 2009
My Favorite Three
Kamryn sang Owen all of his favorite songs on the phone tonight. My heart melted. I'm off to bed.
Just the TWO of us!
Carson and Kamryn flew back to Phoenix today and arrived safely. We sure do miss them SO much already. It's quiet here. I'm not a fan of quiet.
We stopped at a little outdoor cafe for lunch today and the hostess said "just you two"?
I guess I should probably get used to it! :)
Tonight we we are going to explore downtown. There has to be something fun and exciting going on since it's Saturday.
Tomorrow, we'll drive around looking for a beach. Anyone have any ideas of beaches in Northern California??
I have been editing and sorting through hundreds of vacation photos, I am planning on posting those tonight after Owen is in bed.
For now, I have to drive back to my hotel 30 min away (that we stayed in last night) because I left my favorite pillows. Bummer. Then we're off to Target to buy Owen some toys for the hotel room. The ice buckets, pens/pads of paper, and remote controls are no longer exciting. The pillow mints have allowed me enough time to write this quick update... there is chocolate everywhere! I guess Owen picked the bed he wants to sleep in tonight!
Friday, October 23, 2009
Big Sigh.....
We are hoping somebody will cancel their reservations at this hotel so we can just stay put. If not, we will jump in the car and be spontaneous! We'll drive down to San Jose by the airport and find a hotel for tonight. I'll drop of my husband and baby girl at the airport first thing in the morning. Sigh.
Then I'll load up the car with the luggage and oxygen tanks and come back up to Palo Alto to check back into the same hotel where we currently reside. Sigh.
I will keep busy while Owen is resting by finally uploading all of our vacation photos and have lots to blog about!
THANK YOU to everyone that has offered meals, assistance, to sit with me at the hospital during Owen's cath and most of all, the prayers!! We are so very blessed to have such great support!!
I am off to finish packing up the room, finishing up the laundry that I left in hotel laundryroom in the basement (hope it's still there) and wait to hear about our next step. Sigh.
Thursday, October 22, 2009
Not the Cardiology visit we were hoping for!
*Lucile Packard Children's Hospital
The cardiologists were not thrilled with Owen's weight loss over the last six months. They were not happy with his energy levels, nor with his constant dips in oxygen saturations. Our appointment lasted five hours, including his echo and ekg. I knew when Dr Rosenthal (cardiology) came in the room and said "we have a bed available", that things weren't good. This was after we already met with another cardiologist and the nutritionist.
I did some convincing so that I could keep him out of the hospital for the short term. We are to stay in the area! Owen has cardiology clinic on Monday again, including labwork. They got him booked in the cath lab for a cardiac catherization on Wednesday with a one way ticket to ICU afterwards.
In the meantime, he MUST gain weight to stay out of the hospital. I put him on 30cal/ounce pediasure on a 24 hour drip (to avoid puking). He will be on a continuous drip of formula into his Gtube and PRAY that he gains weight.
In the cath on Wednesday they will check his pressures and diastolic function of his heart. If things look bad, we will move forward with listing him for transplant. If he fails to gain weight, he will be admitted, and we will move forward with listing him for transplant.
I am PRAYING that he gains a little weight and that his cath shows that he is stable enough to go home, at least for a few more months.
I had a meltdown or two today! I hate the idea of putting my baby girl on a plane with my hubby because I will miss them dearly. I hate the idea of being alone in a town where I don't know a soul. I hate the idea of sitting in the waiting area next Wednesday, alone, while our little guy is in the cath lab.
We knew this time would come. I just wasn't ready for it to happen on this trip.
On the bright side...
Carson's baby sister, Janesa, moved to San Fransisco last month to take a big position with MAC cosmetics. She drove down to hang out with us tonight, hotel style.
It was so great to see Janesa!! We had planned on a night in the city, having a good time. Instead, we are busy trying to book airlines, hotel rooms (it's Stanford's homecoming weekend and everything is booked up!), and trying to organize the next couple weeks of our lives.
So we will settle for Olive Garden takeout!
I planned to move into the Ronald McDonald House this week, but there is a waiting list of 15 families ahead of us. Yikes. I'm awaiting a call from the housing office.
Carson and Kamryn will fly home Saturday morning. I will chill with Owen and hopefully settle into one hotel room for the week. I don't know how I am going to do it.
PRAY that Owen gains weight, that his cath goes smoothly and that we can fly home in time for Halloween! This is wishful thinking... but it can happen.
I know it's out of our hands at this point.
Wednesday, October 21, 2009
We Made It...
Tomorrow is Owen's cardiology clinics at Stanford. I'm anxious to see what his heart is up to and get some feedback on transplant. I have many concerns. His saturations have been all over the place and I never thought I'd use the oximeter as much as I have the past few weeks. It freaks me out everytime he turns blue and drops into the 50% range. The puking has been inconsistent as well, but I'm curious to see what he weighs. He looks like he's losing weight to me, but it might be the new hairdo. :)
I have so many pictures and funny stories from our vacation... I can't wait to post them! But first, I need sleep.
Monday, October 19, 2009
Friday, October 16, 2009
Extreme Makeover -- Owen edition!
Thursday, October 15, 2009
One Year Ago....
I still remember the day as if it was yesterday. We took Owen in for his 3rd cardiac cath. The intention was to "fine tune" his heart for winter, to avoid the hospital. His last open heart surgery was six months prior. He was doing okay... not thriving, but okay.
I remember sitting in the waiting area when Dr. Pearl (Owen's heart surgeon) came and sat down. My first reaction was that he was coming to say "hello"... he wasn't the one performing the catherization. Instead, he was the bearer of the news that would change the course of our heart journey.
Owen would need a heart transplant.
I remember the rush of emotions that swarmed over us at that moment. I held back the tears and wanted to pick Dr Pearl's brain. He did say that a transplant might be in his near future, but there is a chance we have some time on our hands.
Here we are a year later!!
Owen is still not listed for a heart transplant. This is a miracle and a blessing.
What are we waiting for??
We are waiting for Owen to become sicker. Owen's heart is failing and has been for well over a year now. He is on nine oral medications that sustain him at home. Owen has one good day for every couple of bad ones. He exhausts easy. He has little energy (not even close to a normal toddler). His oxygen saturations run in the mid 70's on 3/4 liter of oxygen. His blood pressures are low. He just feels crummy alot of the time.
At some point, Owen's cardiac output will decline. His oral medications will not be enough and he will need IV medications to sustain him. That is when he will be listed and placed at the top of the transplant waiting list.
Here's another obstacle.
Owen has highly sensitized antibodies (98% to be exact). This means that the donor population that he can accept a heart from is minimal. When he starts to decline, he will start an aggressive treatment of IVIG (immunoglobulins) and Cellcept. This will wipe out his immune system and hopefully his antibodies. This will open up the opportunity to find a negative crossmatch for a heart.
Right now, we walk a fine line. We don't want to list him too soon as he is doing okay at home and gaining strength. We also don't want to wait too long to list him, have him decline rapidly and not get a heart in time.
We continue to count our blessings and thank you all for your prayers!! We know that when the time is right, Owen's perfect heart will come.
Wednesday, October 14, 2009
Success!
I am completely caught up on laundry.
I went shopping with both kids and found two bras that fit amazing... on sale.
I avoided getting even a droplet of puke on me during all three of Owen's pukefests today.
I have the parmesan chicken breaded in the fridge ready to fry up for dinner.
I stopped and rented Kamryn and Gigi two movies at Redbox to occupy them tonight.
Owen took a two hour nap, allowing me to tackle the house. Thank you Owen.
Kamryn finished her homework for the week she will be out of school while we are in California.
I gave myself a manicure, painted Kamryn's fingers and toes, and trimmed up Owen's.
Today was a success!! I L-O-V-E days like today!
Tuesday, October 13, 2009
Pumpkins and Oximeters
We were homebound so I gave Apria a call to come by and switch out our oxygen tanks. It's always nice to have a new bunch of fully loaded green tanks in our "oxygen corner". We added an "M TANK" to the crew... he's the middle sized guy. We are getting to know all of the delivery drivers and Owen scoots behind them as they bring oxygen in and out of the house. I'm pretty sure he thinks they are there JUST to see him and play with him. And this is why we need all of these lovely beauties decorating our home!!! The pink number was Owen's oxygen saturations as of this evening on 3/4 liters of O2. Not good. And here are his sats after 30 min on 1 liter of oxygen.
I took a super cute video of the little guy tonight and he was full of energy... for him that is. That was just before I hooked him up to the oximeter and boy was he working for each breath. As soon as I can get youtube or vimeo to upload the video (it's a big video file), I will post it.
Carson and I were talking tonight and he asked me if I think Owen is starting to decline. My optimistic side says "he's just having a rough week", but we'll see what they say next week at Stanford.
Another thing that is probably making his feel so crummy is that his massive doses of medications are lowering his blood pressure. Dr Stock (Cardiologist) said that when Owen was admitted for the Gtube surgery last month, they were able to do constant monitoring of his blood pressures and at times his diastolic dropped into the mid 20s. I'd love to back down on some of the meds... especially if they aren't really improving his heart function. We'll know soon.
Owen did tolerate his feeds today and didn't puke once! On the other hand.. he was pretty crabby and wanted to be held and had a really hard time trying to play for even a minute or two. Clearly, he didn't feel great.
He's sound asleep now and tomorrow is a new day. I'm trying to make no plans so that if I get nothing done, I can consider the day a success!! I'm off to bed.
Monday, October 12, 2009
Change of Plans
I realized my plans were going to fail miserably at 9am when Owen puked down the back of my shirt as we were getting ready to walk out the door. Awesome. So he's not tolerating his feeds after all.
We showered again and ran out the door to run just two of the most important, don't need to get out of the car, errands.
When we got home, we had two hours to get the house all cleaned up and laundry started before Jessica (PT) got here. I laid Owen down for his nap. As soon as I said "night-night", he puked again. All over the clean sheets. Sweet.
Another shower.
Dang it... it was time for another feed. I spent the next hour on the phone trying to get Owen's Viagra ordered from a specialty pharmacy in Ohio. Our insurance will only pay for the prescription if it is compounded through their specialty pharmacy. It's lame. Anyway... I think the 5th pharmacist figured it all out.
The doorbell rang... time for PT. Owen was mister moody and didn't want to participate in physical anything. He started to look a little blue and his sats were in the high 60s and dropping. Owen solved. He felt better after we cranked up his O2.
By now, it is almost 2 and my day has been less than productive. Owen crashed while Kamryn and I ate lunch.
Now it's time to hit up Walmart because there is a new Pokemon DS game out today... "I totally need it Mom!" She seriously deserves it too... she has helped me clean up puke, keep an eye on Owen while I rotate laundry, cuddled him when he was supposed to be napping while I talked to pharmacists on the phone... the list goes on and on.
Then it's off to the park for volleyball practice, dinner and bed.
Just another day in our life.
Sunday, October 11, 2009
Weekend Wrap Up
It's FALL BREAK!!! This little gal is off school for the entire week. The weather is perfect, hanging between 85-95 degrees. We have tons of Halloween crafts, outings and fun planned for the week.
Back to our weekend...
We had a little bbq, family get together at the park today. We played volleyball, grilled burgers, got Great-Grandma Betty to swing on the swings (something I'm sure she hasn't done in many years), took turns pushing Owen in his favorite swing, played with baby Livvy, and enjoyed being outdoors together.
We also had a family party at Grandpa Todd and Grandma Monica's to celebrate the monthly birthdays. The kids swam in the freezing cold pool, we ate tons of yummy food, and the kids left with some Halloween goody bags.
Owen had a rough week with pukies, low energy and low sats. I'm excited to say that he is tolerating his feeds and making up for lost energy this weekend!!
That's all I have for now. I will have many posts of our fall break adventures this week!!