Together Again

Today we picked up Daddy, Sis, Grandpa and Grandma at the airport. In Owen's words.. "this was a pretty great day!" We ended the nigh with a fun game of BUNCO at the RMH... beach bunco has never looked so good.  I won for biggest losses.. Kam won for something... and we had a fun time. 

We are all together, under one roof.  Look at this picture.. pure joy!!

Hope you all have a fabulous Labor Day Weekend!! 

Thursday Fun

Today started with a long morning walk and workout in the weight room.. it was a first time and Owen was my personal trainer. "Just four more mom.. you can do.. don't give up!"  Perfect motivator.  Then we got ready and headed to Kindergarten at the hospital.  Just an hour into class, I overheard Owen and his friend Kenzie both say in unison.. "we're ready to go... we are tired."  Ha.  They were totally ready to walk out of there until their teacher convinced them to stay for the last hour of class.  His favorite part of the day was playing cash register and counting money. 

We left just in time to make it to GI clinic.  The NP worked some magic and snuck us in to take a quick peek at his gtube.  It's been loose, but she thinks it looks great, so no worries there.  We had about 30 minutes to eat lunch at the RMH and head out for Physical Therapy.  Owen was stubborn and we pushed him.  His PT was working on stretching his hamstrings.. he can only bend his leg back about 90 degrees, where the rest of us can grab our ankle and pull it to our bum.  So we were given some home work to stretch, as well as keep him moving and having him work on stretching out his calves.  He is just so tight. 

We had yet another appointment with speech therapy an hour after that, then we made it back to the RMH in time for dinner.  A mighty fine dinner too.. wow.. so good.  Food always tastes so much better when you don't have to cook it, don't have to do the dishes afterwards, and it's free!  Thank you to all the volunteers that come into the RMH and provide such amazing service.

After dinner, Owen ran around the family area with the other kids, and he had such a great time.  Tonight was craft night and Owen was sure to use as few beads as possible and get it done as quick as he could. :)

We are finally back in our room and we are getting all our laundry done now.  Owen has been having major giggle fits lately.. he just cracks up and can't stop laughing.  It's totally contagious.  At dinner, everyone tries to make Owen laugh because it is so funny when he gets going.  It's wonderful that he turns bright pink instead of dark purple.

Tomorrow Daddy, Sis, Grandpa Todd and Grandma Monica come into town in the morning.  Owen and I are super excited to see everyone!  We have a fun week planned.  We aren't allowed to go far from Palo Alto and we have to avoid the crowds... so we will get creative.  There are some cool hiking trails I really want to explore and I have heard that Stanford campus is gorgeous, I'd love to just walk around.  We have no appointments at all this weekend... so excited for a break!

Do you all have fun plans for the holiday weekend??

A Normal Day

First of all... Owen got another ZERO on his biopsy from yesterday!  That means zero cellular rejection, which is wonderful!  We are very happy.  :)  We are still waiting to get the test results back on the staining of the sample for the AMR (antibody mediated rejection).  They did see some on his past biopsy samples which has me totally nervous, but there is really nothing we can do at this point.  We are already doing monthly IVIG and hopefully that will continue to decrease the antibody numbers and the AMR isn't causing damage yet.  I just hope it doesn't get to a point where we need to use Plasmapheresis or further intervention (chemo) on the antibodies. 

Owen had an emotional night last night.  Lots of tears, missing home, wondering when the constant pokes and surgeries will end.  This morning he had an eye appointment scheduled with the ophthalmologist to check the blood vessel that burst in his left eye.  I rescheduled it and was thrilled to tell him we were NOT going to the hospital today.  We were going to have a 'normal' day.  Then he said.. "well if we aren't going to my eye appointment, then we get to go to KINDERGARTEN!!!"  Too bad it just so happens to be inside the hospital.. sigh.  He was so happy to go and had a great time.

Afterwards, we were on a mission to find a car wash that didn't cost an arm and a leg.  I finally found one... they have the drive ins, you get out and do it yourself... pull forward to vacuum and dry your car.  Perfect and it was less than $5.  Then we headed to Costco for a couple things. 

I was thrilled to see the elevator at the RMH was back in service.  That was not fun making several trips up and down.  Owen and I played his new Lego Pyramid game... bingo winnings from last night!  We also got back to the RMH in time to sign Owen up for his weekly Reiki massage, which he totally loves!!  He was totally relaxed and enjoyed his hour long massage. 

Tonight is a cooking class at the RMH for the kids.  I'll take pictures with my real camera and not just the ipad one.  On a totally random note... this display always creeps me out.  It's in the basement of the children's hospital, just after you get off the elevator.  When Owen was in ICU there was no restroom for the parent's to use on the unit and so I would run down to the basement to use the one next to the cafeteria.  It's fine unless it's midnight, the halls are empty and you see this....

Until tomorrow...

Biopsy Recovery

 

Owen had a speedy biopsy and his pressures keep looking better each week!  Fantastic news!  No collaterals required coiling and no intervention necessary .. this good news just doesn't get old.  We were discharged from recovery as soon as Owen opened his eyes, grabbed a quick lunch in the cafeteria and headed to the short stay unit to begin his Cytogam infusion.  If we're lucky, we should be out of here by around 3pm!  We'll know results of the biopsy tomorrow....

Biopsy #5

Owen is back in the cath lab for his bi weekly biopsy!  He was full of smiles and so silly this morning.  I still can't get over how comfortable he is in the hospital and around all these doctors... he always has been.  He was chatting up the nurses and cracking jokes for anesthesia.  This was all before we gave him a small dose of versed. 

Once again, I took him to the cath lab and put him out with the anesthesia mask.  He couldn't decide on a flavor so we made him a fruit cocktail of flavors and he went to sleep pretty quickly.  I am so grateful for the cath team letting me scrub up, walk him into the cath lab and put him to sleep as well.  It makes Owen more comfortable.

The plan is to do a quick biopsy, check his pressures and also look for any collaterals off his Superior Vena Cava that would be causing him to desat at times. Well, he only had the one real desat episode, but that was enough for me.  If they find any collaterals that are causing any trouble, they will coil them off, but otherwise, leave them alone as they will resolve with time.

After the cath, Owen goes to recovery for an hour or so until he's done laying flat (to avoid bleeding) and then we head to the Short Stay Unit for a 3hr Cytogam infusion.  I packed a bag to stay overnight.. just in case.. and we all know the one time I don't pack a bag, we will most definitely be admitted. ;)

Our New RMH Digs

We are finally settling in to our new room at the RMH. Since I posted about our last two rooms, I figured it was time to do a post on this one, since it's the grand daddy of rooms.  You can see our previous rooms here and here.

 I still can't believe we have been in Palo Alto for 11 weeks!  I still remember our emotional first week here, followed by a week in the hospital getting IV Milrinone started, then another week trying to adapt to our new 'normal' at the RMH.  Now it's amazing how much it feels like home.  I walk around the RMH and I know just about everyone.  Owen loves everyone here so much and last night spent a good hour chasing some of the boys around the house.  I probably had a permanent smile on my face watching him play. 

Families have come and gone.  I have heard stories of families that have been her for almost a year and there is no end in sight.  Newly diagnosed families, kids just being listed for transplant.  Walking through the hospital is no different.  I know the valet drivers by name, the security team that checks us in, we walk through the hospital to get to Kindergarten each day and we always run into people we know.  It's not normal by any means.. but it's our normal.   

Back to the room... we started out in a regular room, moved to the transplant suites post transplant, and now we are in a bigger post transplant suite with a bathtub. Which makes this boy very happy!   When you walk in our room.. this is what you see... family room.

Look to the left and you see our dining table and kitchen.  The fridge is actually really big in comparison to our last two... it is a wood door so it blends in with the cabinets.  Very fancy.  Whomever sent the Utility Cart and awesome Circus tent from IKEA... thank you thank you.. they have come in SO handy!!

Here is our bedroom with a view!  I am loving all the natural light and we are surrounded by trees... it almost feels like we are secluded in a cabin.  I love it!!  Since the weather is so fabulous all the time, we have these windows open 90% of the time.  It's wonderful.

This is the other view of our room... Owen's space wall and Wii playing nook. 

Here's our bathroom and finally.. the tub.  Our toilet is nicknamed 'the beast' because it likes to run and overflow and makes a big mess.  I had to turn it off at 2am last night at the wall and do a load of laundry, followed up by a deep sanitize.  Awesome.  Our RMH go to fix it man worked his magic today and hopefully it's fixed.

Here's just another view of the family room with vaulted ceilings.. woot!  The stroller is off to the right, just by our front door.  Not a bad place to lounge when we are here.  We have been so busy hanging around outside, that we are hardly in here.  I will probably do a little picture tour of the house this week.  It is our HUGE home right now with 49 bedrooms (we like to go big) and so I want to make sure it goes in our blog book for Owen. 

Tonight we have dinner by the Palo Alto Fire Department.. Owen loves it!!  He likes to explore the fire trucks, talk to the fire fighters, watch them grill up the steaks (his favorite) and it's also birthday night at the RMH.  Lots of fun.  First we need to get to walk across the street to the mall and get him some tennis shoes for PT.  I kept trying to get him to put his shoes on and he complained his feet hurt.  Turns out they are way too small.. sigh.. he is growing like a weed!  Enough chit chat.. we are off!

The Family Album Project.. Owen Pics

Last night The Family Album Project was back at the RMH for more picture fun!  Look at these adorable cheeks... I am pretty sure the steroid cheeks are at full capacity at this point.  We are weaning down off prednisone, so it won't be long before his cheeks start to deflate.  So adorable though.

Here Owen is keeping it real.  As you can see the steroids only have an impact on his cheeks and double chin.. the rest of him is long and bony as always.  We are still working on getting some muscles in those legs and arms.

Here is the ninja warrior in action.  He was so excited to see this Ninja shirt in Gymboree yesterday as we passed by.  He is having a minor ninja obsession lately and is certain that he is going to be a black belt in karate someday!  He very may will be, but he can't do any impact sports.. so we'll see. :)

This is just a fun little comparison of his past photoshoots at the RMH.  The first one was just over a month ago.. crazy!!  Also.. I just realized it is August 23rd!!  Owen was listed for transplant ONE YEAR AGO today!!  Wow. 

The next photoshoot will be in two weeks.. but it will be a FAMILY photo!! So happy that we will have Kam and Carson here with us!! Thanks for all the love and support.. have a great weekend!

Cardiology Update

Kindergarten, cardiology, a picnic lunch, a long afternoon walk, a trip to the grocery store, dinner and now we are ready for bed. It's been a long day.  Kindergarten was wonderful, as always.  Then we headed downstairs for cardiology clinic.  I came to clinic today ready to ask a million questions that were on my mind, and I got answers.  Dr B spent a ton of time with us making sure I got all the answers I needed.

I had questions about the post transplant treatment protocols... meds used, steroids, frequent biopsies, ect.  We discussed the differences between Cyclosporine and Prograf (both anti-rejection meds)... Stanford prefers Cyclo, and other centers may prefer Prograf.  We talked about the high dose Prednisone and the benefits/long term side effects.  Owen started on 10mg 2x a day and he is down to 70% of his original dose.  We are slowly weaning.  We also discussed Cellcept and how it works together with Cyclosporine and Prednisone to help with rejection.  Different medicine target different cells.. T cells and B cells. 

We did agree that Owen's desatting episode the other night was probably due to collaterals that are still present... we will take a look at those during his next biopsy on Tuesday.  The elevated HR issue resolved itself, but my guess is that it was just a 24hr tummy bug since there is no other explanation.

Most importantly, we discussed Owen's DSA results.  Owen's DSAs (Donor Specific Antibodies) are very elevated!  He has antibodies against four major antigens and two of those are very elevated.  Since his biopsies have shown zero rejection so far, the antibodies aren't damaging his heart.. yet.    He said that some kids have extremely high antibody levels and they never affect the heart, and others have severe rejection (AMR: Antibody Mediated Rejection). 

He mentioned briefly that he was going to have his previous four biopsy samples tested a little further to see if they can find any compliment binding antigens (I think that's what he said.)   What this means in the short term is that we will have to continue the IVIG and be conservative on his anti rejection drug/steroid weans.  At some point, we will have discuss whether or not we will stop IVIG all together and see what happens.  Best case scenario is that these antibodies just don't affect or damage his heart and or cause graft failure.  This is new science.. 10 years ago, children would have graft failure and require retransplantation and they didn't have a good explanation.  Now they have different levels of antibody testing, which is why we are at Stanford.  They do a ton of research into antibodies and developed many tests that other centers are using today to test antibodies pre/post transplant.  There is no easy explanation...one treatment such as IVIG may work for one patient and not for another.  Plasmapheresis is always an option as are other chemo based drugs.  We just pray that we don't get to that point and we stay in the reality that these next few months are the most critical and so far, so good!!

After our highly informative cardio visit, we decided to keep it low key and have a picnic lunch in our backyard.  Then followed that up with a long walk.  There is a gully behind the RMH with a dirt trail but we can't figure out how to get down there... I'm sure it's dangerous and that is why you can't get there, but it looks cool.. like being in the mountains. 

Tonight was also Owen's first massage ever!!!  Three times weekly a different massage therapist comes to the RMH and they offer free massages.  I hate massages, so I signed Owen up for a Reiki massage (thanks Stacey Lihn).  He LOVED it!  He laid on the table and didn't move an inch and kept saying how good it felt.  He was in heaven!! 

Follow that up with soup night and we had a great day overall.  Tomorrow is another photo session at the RMH.. pictures to follow.

Feeling Better

It has been a busy day, but most importantly, Owen is doing great! After sleeping away his entire Monday, I was still on edge. Today he woke up at 6am ready for breakfast and excited to go to Kindergarten.   We made it to Kinder only 10 minutes late, we're getting closer to being on time each day.  Owen had a great time at the hospital school and I met a couple heart moms.  It was a successful morning.

We got back to the RMH for lunch and Owen ate two bites of his turkey sandwich and a grape.  This seems like nothing, but just the littlest interest in eating orally is fantastic!!  I would love to see him wean off his tube in the next year.  Don't let these cheeks fool you... he's still got a tiny body underneath this head. 

Tonight for dinner, he ate a couple chips and salad, then the much anticipated BINGO night!   Owen had everyone at our table cracking up, as usual.  He loves the attention.. Mr Comedian. We have the worst luck at BINGO night and are usually the last family to get a BINGO.  When we were the last family tonight with no BINGO, the only game left was Monopoly, so they swapped it out for this super cool Star Wars Lego set.  Over the last few weeks, Owen has won a lot of Lego sets and requests Legos from Child Life when we are stuck in a hospital room for his long infusions.  He is loving them!!  So fun... this was tonight's build.

Tomorrow is a busy day in cardiology clinic and hopefully we'll get some insight on his desaturation episode the other night.  Some med changes are in order and hopefully I can convince them to do a quicker steroid wean.. he's doing so great!!  I'll post after clinic tomorrow. ;)

Emergency Room

Owen had his first trip to the ER last night.

At around 9pm, I gave Owen a bath and when I was drying him off and changing his bandages, he was blue.  The shade of blue he used to be, which is clearly not normal.  I grabbed the pulse ox and his sats were barely bumping 80%... great sats for his old heart, not so much for his new one.  It took a few minutes to get his sats back to 99%.  

All night long he was tossing, turning, grunting and was just 'off'.  I took his temperature several times and he didn't have a fever.  When I placed my hand on his chest it was thumping like crazy, so I checked his HR and it was 150.  His baseline is around 108, so it was definitely fast.

At 2am, Owen sat up and said he felt nauseous, followed by puking.  I grabbed my little transplant binder and read the page.. "when to call cardiology.." and of course all three of those things were on my list, so I called the on call cardio fellow at the hospital.  She knows us well and said she'd call Dr Rosenthal and get his input.  Then called back about 20 minutes later to tell us to come into the ER.  They were waiting for us when we arrived and quickly took us to an isolation room.  Owen was less than thrilled.

After a chest xray (trying to figure out low sats, which remained in the low 90s the entire time we were in the ER), echo (looking for signs of rejection) and ekg (trying to figure out fast HR)... everything came back fantastic and normal.  We were discharged by 7am and were on our way back to the RMH.  Owen got cozy, but not too comfortable, because we had to be back at the hospital lab by 8am to do his labs and check his Cyclosporine level at the same time.

Those lab results just came back normal.  Every panel we ran, WBC, everything is great.  His Cyclosporine levels are slightly lower than they want them, but wouldn't explain any of his symptoms. After sleeping from 9am to 12:30pm, we are up and relaxing in our new room.  On Saturday, I spent four hours moving from one RMH room to the other, just so Mr Owen would have a bathtub. Which then takes us to last night when he got out of the bathtub and his sats were crummy. 

So here we are relaxing and hoping that all is well.  Maybe it was a quick 24 hr virus?  I don't know, but I hope whatever it is passes soon.

Here's to a relaxing Monday evening. :)

School Project

We started our morning with an hour of Physical Therapy. Afterwards, Owen was insistent on heading to the hospital so we could make it to the last hour of Kindergarten. Today was art day!   here is Owen's first art project ever!  I guess he was going for the camo fish look. ;)

The rest of the day consisted of rest and relaxation.  Tomorrow we will be moving into a different room at the RMH.  A bigger suite with a bathtub for Mr Owen!  YAY for a bathtub, but packing up and moving isn't fun.. at least it's just across the hall.  Happy Weekend.

First Day of Kindergarten

Owen started his first day of Kindergarten today!! It was a rough morning with headaches, bandage changes, and a soaked bed.. but we figured it out and made it to school only an hour late.   Good thing he was the only k-4th grader in attendance this morning.  He had a ton of one on one attention with the teachers.  The 5th-high school classroom was bumping with tons of kids.. guess school is a little more lax for the early years.

More kids will come next week I'm sure.  A little girl battling cancer showed up after us and she worked on reading with Kevin, while Owen did some math manipulative and did some showing off with his sight word skills.  At the end of the hour (that we made it for), Owen said "I LOVE Kindergarten.. it was so fun!" 

On our way into school we ran into Dr B... one of Owen's transplant/heart failure cardiologists.  He is so great with Owen and can get him to do things that he won't even consider doing for me.  Like taking off his sternal incision dressing.. he refuses to go without a bandage.. Dr B took it right off and said "you don't need this anymore."  To which Owen replies.. "Of course I don't.. it's all healed."  Then today I wanted a picture for the first day of school and he was being stubborn, Dr B walks up and he jumps out of his stroller for a photo op.  Awesome.

After school, we headed to a local Honda dealership because the battery was dying in my Pilot.  So a new battery (under warranty) and we were on our way back to the RMH for an afternoon nap.  Owen is a tired boy! 

Biopsy Results

After a long night in the SSU, we left the hospital at around 6am, not before we had to do a blood draw since the IV went bust. :(  We came back to the RMH for a shower so that I could feel human again, and then hurried back to the hospital for Cardiology clinic this morning.  Dr Bernstein was back and it was great to see him again.  Owen's labs look great, but we still need to get his Cyclosporine levels figured out.  I suggested switching to another anti rejection med that doesn't have the oily texture that makes Owen gag and vomit.  We'll see how things go over the next week or so. 

 

Other than that, everything looks good.  I got a referral to the pediatric opthamologist to look at the blood leaking in his left eye.  I'm sure it's just a popped blood vessel from the high blood pressure and headaches, but I want to be sure. 

 

I just got a call from cardiology and the biopsy results JUST came back with ZERO rejection!! Yay.. the news just keeps getting better.  So happy for Owen!   Now we get a full week off any cardio appts and lab draws.. and two weeks before we go back for IVIG/Biopsy again.   We are still waiting to get the results of the Donor Specific Antibodies... this will determine if we need to continue the IVIG indefinitely or if we can stop it.  Owen has been getting these monthly/twice weekly infusions for over a year now.. he is over it!

 

After our cardio appointment, we ran upstairs to check out the hospital school and to meet his new teacher, Kevin.  He was very funny and Owen likes him a lot.  It's going to be a fun place to go, learn, play... and I will get some mommy time!  I get to drop him off with his friends for two whole hours a day... free time!  I get to work out, get a pedicure, get a hair cut, grocery shop with a real cart (not just the stroller).. YAY!!

 

Random picture, but it's all I got tonight. :)  Missing my baby girl.  Only two weeks until they arrive!!

Biopsy #4 Recovery

Owen had a speedy biopsy this morning. Dr Peng said that his arteries all look great, his pressures are fantastic and there aren't any concerns.  It's so wonderful to hear good news each week... when we spent years getting bad news.  I keep waiting for the floor to drop out from under me.. but it hasn't happened yet. 

Owen woke up ferocious and feisty.  They must have changed up the anesthetics or gave him something new.. wow.. he was not himself.  Glad that's over with.  He's settled into the short stay unit and had his Echo already.  We already run the Cytogam over 3 hours and we just started the 12 hour IVIG infusion.   

Owen has had three big chicken tenders already and is happy to watch tv and read books.  I ran up and visited with Ivy, she looks great too.  We are in a shared room with no roommate, so we are hoping that things stay this way and I can sleep in the other hospital bed next to Owen tonight. 

Owen's labs look great. His Cyclosporine (anti-rejection med) levels are a little low again, so we are just adjusting the dose.  His other levels are perfect. 

We will get a two week break from biopsies and we don't have to come back to do this again for 14 days!!  YAY!  At that time, he will also get another IVIG and Cytogam infusion.  We are just moving forward with everything, keeping our sights on the big picture.

Tomorrow we have cardiology clinic and we'll get the biopsy results hopefully in the morning.  We are off to order dinner and to play some board games.  Night.

Biopsy #4 Underway!

I just took Owen back to the cath lab and knocked him out with anesthesia. This time we tried Wintergreen flavor on the mask and he was not having it. Switched to Cherry and he drifted off without a fight. He was feeling much better this morning, than he was last week for his biopsy.  No headaches and the blood pressure is under control.. yay.  Dr Peng said this will be an "annual" biopsy, done at 4 weeks and then again at 1 year.  They use arterial access and check all his arteries to make sure they are clear.. this is a bigger procedure and he will have to lay flat for about 4 hours afterwards to ensure he doesn't bleed out.  

Owen wasn't upset about the cath or the anesthesia.. he was more anxious and frustrated that we have to stay for 18 hours for the IVIG and Cytogam infusions.  I'm going to do my best to make it a fun afternoon/evening for my boy.  I am off to the library and play room to stock up on some goodies!

Thanks for all the prayers and positivity!!

Chest Scar & Prayer Requests

We started our week off with a trip to the movie theatre to see the new Planes movie. We were seriously the only people in the theatre this morning, it was great!   Afterwards, we headed to Physical Therapy and Owen did squats, rode the scooter board, and did a little obstacle course.. he was exhausted!

Tonight was a long shower, which Owen hates, and then ready for an early bedtime.  I spent a good hour drawing up meds and blending food getting ready for our long day/night at the hospital tomorrow.  Owen has his 4th, and last weekly biopsy tomorrow, followed by Cytogam and IVIG infusions.  Again, prayers for a brave boy, zero rejection and a good day. 

Owen's chest is healing quickly.. it still looks gruesome with all the staple scars and it's really pink, but it will be white and looks a million times better in another month.  Owen still thinks it's gushing blood, so we keep gauze and tape over it for fun.  It's hard to believe that he has had the same zipper opened FOUR times... 1 week, 3 months, 3 years and 5.5 years.. sometimes stapled, sometimes glued, sometimes stitched.  Anxious to see what his new scar will look like when it's 100% healed. 

Owen's close buddy Zoe is having her Fontan tomorrow at CHOP... send good thoughts and prayers their way!! 

Ivy has had another miracle and her brain bleeds have stopped and she is extubated.  Can't wait to stop by and see her tomorrow!  Continue to pray for this little miracle girl.

Many prayers for Owen's friend Mackenzie at the RMH.. she is waiting for a new liver.  Owen and Mackenzie get to start Kindergarten this week together at the hospital... trouble trouble!!  Owen was telling the nurses that they are going to blow up the lab in science.... awesome.

Lots of fun things this week!

Carnival Fun

It was a relaxing Saturday in Palo Alto. Owen and I ran to the hospital lab to get Mommy's blood drawn, which Owen found amusing since he was not the one being poked for once.  Then we headed back to the RMH for delicious brunch and good company.  This afternoon was a little 'beat the heat' party in our RMH backyard. 

Owen loved the Hulk tattoos, we played some carnival games, ate chips and salsa and threw water balloons.

The volunteers just happened to have Spiderman masks... he wore the perfect attire.

Owen was the first to discover his first moustache growing.  The Cyclosporine (anti rejection meds) cause hair growth.  Looks like Owen is growing a stache and a goatee.  I had to angle his head just right to have the sun hit it or you would never see it.  So cute. 

After our carnival fun, we took a long afternoon nap and woke up feeling blah.  You know when you take a late afternoon nap and sleep too long and you wake up wishing you would have never napped.  We had a pan of homemade frozen lasagna, thanks to a new friend in Palo Alto, so we put that in the oven and had a fabulous dinner!! Now we are relaxing in bed playing Wii and waiting for the sun to go down. 

Family Album Project.. take 2!

Every other Thursday, a photographer comes to take photos of families staying at the RMH.   You can see more of our last session here.  Owen was having a rough day.. lots of therapies, lots of errands.  He really wanted to do pictures and have fun, but he was really tired. You can see the little bags under his eyes in this photo.  This was his best "i'm gonna kick your butt" face.

Let's compare to his boxer picture from just four weeks ago!  As his uncle said.. "he moved up a weight class."  Only he hasn't even gained a pound. .it's all those cheeks from the steroids. 

Here's another picture with those cheeks.. to die for!  Oh and he had a hair cut yesterday too.  We also noticed some little peach fuzz growing .. he's going to have a blond stache soon.  The major side effect of cyclosporine is excessive hair growth.  It's all small stuff when we think of the big picture.. a healthy boy with lots to life to live!!

Just for fun.. another comparison shot.  Missing tooth and steroid cheeks are so adorable on him.

We didn't take too many pictures this time around because the photographer was running behind schedule and Owen wasn't totally feeling like a supermodel. 

 

Last night I had some weird stress/panic attack and my heart rate/blood pressure was really high.  I found a doctor at Stanford to see me this morning and we are running some labs.  I'm going to start on a very low dose blood pressure medicine to help keep things healthy until I can unload a little stress.  In the meantime, we are working on eating healthy and doing lots of cardiovascular exercise for Owen's new heart... and mine. ;) 

 

Thank you for the prayers and I am going to ask that you keep Ivy in your prayers today as well.  Remember I mentioned they came for a visit the night before last?  Well, she was having headaches, really bad headaches and it turns out they were brain bleeds. She is back at LPCH and had brain surgery last night, but she is still bleeding actively.  She is on blood thinners for her artificial mitral valve, but they have to get her blood clotting to stop the brain bleeds, but it puts her precious heart at risk.  Keep this sweet family in your prayers.  https://www.facebook.com/missiontoamillion

 

Biopsy Results

Most importantly... Owen's biopsy results were ZERO!!!  His Cyclosporine (anti-rejection medicine) levels were perfect at 358!  His blood pressure is still a little high 133/88, but I am checking it and charting it very frequently so hopefully we can get to the bottom of that. 

Our day has been busy.  Owen woke up with another awful headache and nauseated.  We were 30 minutes late for his OT session, but we made it and he had a great time. 

We scheduled all of Owen's appointments for the next 9 weeks and we are going to be so busy.  We have 64 appointments scheduled between now and the 2nd week of October (hopefully the week we will get discharged to go HOME!)  That is about 62 days, but who's counting?! 

I forgot to post that last night we had a visit from Art aka. Dr Rabbit.  Owen loves him and he is such a great guy.. he even came to visit Owen in 3West post op and did some of his favorite magic tricks.

We also had a visit from our sweet friends, the Sammons, our neighbors from Arizona.  Ivy is here for treatments this week. 

Tonight is picture night, Owen got a new haircut today and picked out a cool new outfit.  It's kind of a big deal to him. :)  Thanks for all you prayers and good thoughts.. they are working!! 

Biopsy #3 {Update on Blood Pressure}

So sorry I haven't had a chance to update sooner.. today has been busy.   Owen was only in the cath lab for about an hour for his biopsy.. then we were off to he PACU (recovery unit) for another two hours while he woke up from anesthesia and held his leg straight (to avoid bleeding).  Dr P said his heart pressures are great.  We should know the full biopsy results tomorrow. 

His blood pressures did come down after a while, but they were still too high for comfort.  We started him on the Clonidine transdermal patch to help with his pressures.  We had to wait for the pharmacy to get the insurance approval and then grabbed some lunch before we were on our way out of there.  I'm kinda wishing all his medicine was given via patches changed once a week. Very cool.

 After we got back to the RMH, I had a couple loads of laundry to do and then a few faxes to send to the insurance companies.  It's always something.  Now we are resting up and I finally had a chance to update.  I'm going to call Kam and find out how her first day of school was before she leaves for three hours of dance tonight. 

 

Owen and I have a busy day of therapies tomorrow and then it's another night of photos for the Family Album Project at the RMH.  Remember these super cute photos??  I'll be sure to post them tomorrow night as well as biopsy results as soon as I get them.  Thank you for all the prayers. :) 

8th Grade and Biopsy #3

Owen is currently in the cath lab.. his 3rd biopsy is underway. But first, I am so excited that Kam sent me a picture on her first day of 8th grade!!!   I face timed with her last night and I was so sad that I am not there with her, helping her organize her clothes, her binder, ect.  I miss her so much.  Doesn't she look fabulous on her first day?!  Love you Sis!!

Oh and it seems like just yesterday that Kam was starting Kindergarten.  Now Owen is starting Kinder next week.  Time just flies by.  I am a little bummed that Owen is missing out on the traditional first day of Kindergarten with his peers. At the same time, I am so grateful that he has been given the gift of a new heart and hopefully a promise of many more first days of school.

Back to Mr Owen. He had a rough morning.  He had a really bad headache, but I couldn't give him Tylenol because they do IV Tylenol in the cath lab and I didn't want to double dose him.  Then we took his blood pressure and it was 157/98... too high for comfort.  I gave him his morning blood pressure med to see if would help.   Then chased that with a small dose of Versed.  I took him back to the cath lab and once again, became an anesthesiologist and put him off to dreamland. 

We are praying for zero rejection and also to get these blood pressures under control.  Post op, his blood pressures were at 108/70, but I have been closely monitoring them and they are trending up.  It's time to introduce additional meds to his daily cocktail. 

Thank you for all the good thoughts and prayers. 

Good Days and Not Such Good Days

Yesterday was a great day, today is not.   Monday started out with an hour long physical therapy evaluation.  Owen did a fantastic job and worked hard with his new physical therapist and we set a goal of 2-3 times a week of rehab.  Between PT, OT and Speech, we will be spending plenty of time at the LPCH outpatient rehab center.  I am so glad that Owen likes his therapists and enjoys going to therapy.

I am hoping we can start weaning the Steroids a little quicker than we are.  He is on a very slow tapering schedule and he will still be on a pretty hefty dose of Prednisone.  Look at these adorable cheeks as a result!  The major side effect that will affect his rehab is the leg weakness the steroids cause... it really puts a damper on pushing his leg strength.

After therapy, we headed to lunch to meet our heart friends from Cali.  Mr T. had an apt at LPCH and so we met his mom and Gma outside for some lunch and a good chat. {Owen only took his mask off for pictures}  After lunch, we grabbed some fresh produce at the little farmers market on our way back to the RMH.  Owen said "this has been a really great day!"  I agree.

Today we woke up early to head to the hospital for more blood draws.  He is so over getting poked and had a rough time.  He also woke up with a headache {darn steroids} and so the last thing he wanted to do was be dragged to a lab.  Afterwards, I gave him his medications and he immediately started puking.  It was just not his morning.  We came back to the RMH to clean up and rest. 

We did get his lab results back and we finally got his Cyclosporine levels where we need them to be!! YAY!!  Thank you all for your wonderful suggestions on getting the meds to go down orally.. that one is a nasty one.  I finally had to revert back to the Gtube because he would just puke the Cyclo up as soon as it hit the back of his tongue.. every single time.  I tried everything!!!  Every single time he would puke and I wasn't sure how many point milligrams he was getting and we need consistency so we can get his levels figured out.  So while the gtube is not ideal for this med, it's the best way for now.  I'm hoping that when his voice comes back fully, and his throat heals from the intubation, his gag reflex will be a little less sensitive.  Then we will try again.  He was such a big guy and tried each time without complaining, even when he knew it was going to make his vomit.  Mad props to Mr Owen!

Tonight we have his back to school meeting at the RMH.  I'm not sure what to expect, but I am pretty sure there is a Kindergarten program at the hospital school.. I'll know more after tonight! 

Tomorrow is Owen's 3rd biopsy bright and early.  I will be posting updates from the hospital as usual.  We continue to pray for zero rejection.  He has weekly biopsies on week 1-4 post transplant and then they will be pushed out to every other week for weeks 5-12.  Owen is pushing through and there is light at the end of the tunnel. I still can't believe he is 3 weeks post transplant!!