Day 6 on the Transplant List

Another productive day in the CVICU.  Owen had a good morning. He was febrile so we sent off cultures of every line and his secretions from this intubation tube.  His HR elevates to 170, I surround him with icepacks and we give him IV Tylenol.. then things tend to stabilize.  The preliminary cultures have come back and his secretion culture came back gram negative (maybe pneumonia).  They don't seem too concerned and he has been getting some hard core antibiotics all day so hopefully it knocks out any infection brewing. 

He has had a quiet day overall.  We watched Antman, he got two EKGs, an ECHO where we saw good flow through the stent in his coronary, he said goodbye to his cousins and spent some time with Daddy and Uncle Rustyn.  We were going to pull his femoral line but (thanks to Carson) we realized we don't have enough access to keep a heparin free line and we need to draw an accurate heparin level everyday and need a clean line to do so.  Shout out to Carson for being the only one between ALL of us (docs, nurses, ect) to catch that one.  So we leave the line for today and we'll have to figure out a plan in rounds tomorrow. 

We started to wake up his belly a little and ran Pedialyte at 2ccs an hour all day and he seems fine.  We switched some of his transplant meds to his gtube.  We really want to decrease the amount of meds running through the lines.

We did a five hour sprint off the ventilator and he did fantastic.  His numbers actually looked better.  We are all super cautious about extubation because his heart is so sick and we will be requiring more work of him.  It's such a fine balance.  We have his fluid balance almost exact (not neg or pos). 

So overall a good day. His nurses are phenomenol and that's what you get when you are the critical child on the unit.  We get lots of visitors from his team that drop in to say hello, even when not on service.  Everyone loves Mr. Owen and he had them all extremely worried last week.  I can see in their faces when they look at the monitor and look at Owen that they are pleased at his progress, but worried about him.  Never underestimate this boy.

When I walked in this morning I saw his little Darth Vader socks and Capt America blanket.  He is just my little boy. 

This morning I went to the hotel to shower and spend a little time with Kam and Logan.  Logi just snuggled and cuddled forever.   Being away from my babies is one of the toughest parts of this journey.  I know it's what's best for Owen.  There is Facetime and lots of visits but Ill miss the daily cuddles and kisses.  Kam is the best big sister he could ask for and he has the best Daddy.

I left for a while this afternoon while Daddy and Rustyn stayed bedside.  Kam, Logi and I have a normal hour at Costco.  We ordered contacts, bought a fuzzy blanket, a few towels and things I"ll need for the upcoming months here.  It felt like life was normal, even if just for an hour. 

I talked with Ruben at the RMH and we go way back. ;)  They aren't taking new houseguests until at least June 16th because they want to get all the current residents to the new RMH in the next week or so.  I am sleeping in a closet with a hospital bed in it most nights.  I'm working with insurance to keep covering the hotel room (right next to the RMH) so I have somewhere to shower, unwind, eat breakfast and relax.  Everything is working itself out. 

We continue the wait....

Day 5 on the Transplant List

Owen did pretty good overnight.  He had moments where his HR increased to 170 from 145 for absolutely no reason while he was sleeping soundly.  There was a new team in rounds this morning to start off a new week.  Top priority of the day was to retape his breathing tube because the tape was falling off.  We had to give him some sedation so that we could protect his airway while we changed it.  After that we couldn't get him to wake up until about 4:30pm.  I finally opened all the windows and made it bright as day to get him up.  After changing him, doing oral care, suctioning him and getting him repositioned.. his sats dropped to 88 and his hR climbed to 180.  He was as calm as can be, but his heart just has no reserves.  The team wanted to try to Sprint him on the vent today (trial him by turning down the support to see how his heart tolerates it) but we are going to put that off until tomorrow.  We didn't touch the Epi today because his BP has been 77/42.  His chest xrays and fluid balance are perfect.  He is doing well on the Dilaudid for comfort.  He continues to be responsive and in good spirits.  He doesn't want to do much other than sleep or watch a movie from time to time.  I don't blame him one bit, but I keep trying to think of ways to make the time pass.

This little monkey had no problem making the time pass.  He is everywhere all the time and can't be stopped.  The energy is unreal!  I swapped Carson early this morning and went to the hotel to shower, do a load of laundry and snuggle my other babies.  It was nice to be away for a few hours but I was paranoid the entire time and called Carson a billion times to check in.  I made it back before rounds.

Larissa took the kids shopping today to pick out posters, window clings and comic books for Owen.  They got him some Star Wars socks and a movie to watch.  He hasn't felt much like doing anything yet.. but he loves the posters the girls hung in his room.  They all rallied at the hospital even though Owen didn't feel up to visitors.. we all hung out in the waiting area outside the CVICU while Daddy watched Owen sleep. 

We took Logi to the gift shop and let him pick out some super loud lazer gun, light up ball and lazer spin toy.  Then they all walked over to Stanford Campus to let Logi play in the grass and run wild.  The weather could not be any nicer here!  It sure beats the 110 degrees in Phoenix right now.

We continue to watch the clock and pray a heart will come soon.  Owen's just hanging in there with everything he's got in him.  I can't even imagine how crummy he feels with the low BP, High HR, a breathing tube down his throat and no food in his belly.  Then to process everything at the young age of 8 takes some serious maturity.  I ask him a million times a day how he's doing and always get a big thumbs up.  His other organs continue to be in optimal condition.. it's just all the product of a failing heart. Hang in there Owen.. the prayers are flooding in.

CVICU Day 5 (Feels like a Month)

Owen has had another busy day.  He hasn't been as stable as I'd like.  His HR today has increased from 155-165... yesterday he was more comfortable at around 135-145.  His fevers have come and gone but are mostly low grade... but no infections.. just a result of his myocardial injury and heart failure.  We put a cooling blanket under him today to help when he gets too warm.  His sats have been dropping into the low 90 range from time to time.  Respiratory therapy has been in here often today helping bag him... he has a coughing fit.. then he desats until he recovers.  His xrays look a little better this morning, but then a little hazier tonight.  Overall I think his lungs look clear, but we are still going to take some of the fluid off by increasing diuretics.  He got a blood transfusion today due to low crit and low po2 (blood gases).  His CVP (central venous pressure) is sitting around 15-18 so that is a little better.  It does increase when he has fevers.  We tried to wean EPI from .4 to .3 but his blood pressure dropped too low, so we went back up.  His vent settings have increased a bit to help support him.  I helped the nurse change his central line dressing in his femoral artery.  It was the line they placed emergently when he coded.  It has been a long day and just when I want to say he's stable.. I am quickly reminded just how critical he is.

 We did watch a little Monsters University this afternoon and now we are watching Paranorman before bed.  I have been bedside all day.

We had a few visitors this morning before everyone gave Owen a break (it was a good day to do so) and headed to Half Moon Bay for the day.  Grandpa Todd and Grandma Monica hung out with me before they had to head to the airport to go back to AZ.  Larissa sent me these great photos from the beach.  I'm glad everyone had a great time!!!  It's nice to know that my kiddos are enjoying themselves (especially Kam) so they don't just sit around and worry. 

Carson swapped places with me around 5pm so I could go spend some time at the hotel with Logan and Kam.  I got to bathe my baby (never take that for granite) and feed him dinner.  I snuggled both kiddos for a bit before Carson called and said Owen was desatting again.  I rushed back and we got him back to his baseline.  Carson is back with the other two at the hotel and I will sleep in my CVICU sleep space again.  I am too nervous to be too far away from him.  Continue the prayers.  He is very sick.  I hesitate to post pictures of him when he is dusky and pale.  It's terrifying as a mother to see him so sick and I just keep praying that he will hold out for his new heart. 

A Busy Day

Owen had another "stable" day.   He slept well last night but had his nurse wake me up often so he could smile and wave at me.  The weekends in the CVICU we tend to take things slowly.  We stopped his Morphine drip and switched to Dilaudid because the constant itching was out of control.  He has done much better with the new drug to keep him comfortable.  He is getting a very low dose but it keeps him comfortable, and he is still fully awake and alert (eyes open and talking).  We have him fluid negative so we have him on just a very low dose of Lasix drip to keep him where we want the fluid balance.  He is getting some super high fat TPN and Lipids for nutrition so nothing in the belly yet.  We pulled the Foley catheter today so that should feel much better.  We discussed extubation but agree he needs a couple more days just to keep as much demand off the heart as we can.  We will work on weaning Epi tomorrow.   He has had fevers throughout the day so we are using cooling blankets and around the clock Tylenol drip to help.  His WBC is low and he doesn't seem to have any infections but we started antibiotics just to be safe. They also sent off blood cultures to be proactive.  The fevers are a result of his cardiac arrest and severe heart failure.  He remains in good spirits!  He had MANY visitors today (2 at a time) and they mostly just let him know they are in here.. but we don't bother him too much.  He got plenty of solid rest throughout the day and I really hope he sleeps well tonight.  Baby steps...

I left early and showered at the hotel.  I got some time with these other two loves outside the hospital for a couple hours before rounds this morning. 

Kam went with her cousins to the Winchester House in San Jose and took the tour...

Everyone rallied at the hospital for the afternoon and kept Logan busy.  I finally have a baby with more energy than I do.  He wore these five teenagers out!! 

I spent the majority of the day bedside with Owen but Carson got a turn while I took the other two to dinner with the fam.  We ate on the patio and Logan went a million miles a minute.  That boy is a ball of energy!  I got to give Logi a bath and got to snuggle my baby to sleep for the first time in almost a week.  It was just what we both needed.  

I'm back with my little Superhero and we are getting ready for bed.  The baby next to us was just extubated and has a fierce cry so I hope he can get some sleep tonight.  Keep the prayers coming ... mostly for Owen to remain calm and comfortable.  :)

Keeping our Spirits Up

Owen had a quiet night last night.  We both went to bed around 10:30 and the nurse called me at 12:30 to let me know he wanted me.  He just wanted to hold my hand and say "I love you..." and so we did that for about an hour before he zonked out again.  I finally slept until 6am.  He remained stable with no real issues.

 

There was a questionable plural effusion in his right lung this morning but we have been giving him IV diuretics and we now have him in the negative so he seems much better.  We switched his Fentanyl to Morphine because he just gets agitated on Fentanyl.  He is much more relaxed with the Morphine but he has been getting the itch... so now we are working with meds to try to help that stop.  It's all about finding balance.

 

He has been very comfortable and opening his eyes.  He had plenty of visitors (only a few at a time).  Carson's dad, Monica, my Parents, Logi, Kam and Gigi have all be in and out for short visits throughout the day.  He has really enjoyed that!  He communicates well with everyone and we are all getting really good at reading his lips. 

 

We started going down on his Epi and he is tolerating it well. We finally have his Heparin at a therapeutic dose.  He is tolerating all the changes well.  He is emotionally doing great and completely understands the situation and we love his little intubation smile.. he says it's a "smolder" and then raises his eyebrows for added effect. 

 

Kam made this awesome poster to decorate his door today...

The other kiddos had a great day!!  They spent the morning with Grandpa Todd and Gma Monica at their hotel.  Logi got to feed the Koi fish and baby ducks and he loved running around outdoors.   Kam gave Logi a morning nap at the hotel (she is the BEST big sister ever) and then she came to spend time with Owen and Carson.  I took my little monkey and we had fun in Palo Alto. 

My parents made it by 11 and Gigi spent some time with Logi and I this afternoon.  We got settled into our hotel room (we have been bouncing around rooms due to availability) that we will be in until Monday.  We are hoping to get a room at the RMH soon.  Logan got lots of Mommy time in and he kept me busy.  We ALL went to dinner together and Owen's nurse kicked me out for some time with my family.  Owen slept the entire time I was gone.  It felt good to get out but the anxiety is still intense.

We hope to have more days like today. Little improvements.  Keeping everyone healthy ... mentally and physically.  Thank you for all the donations, prayers, good thoughts and support.  We feel loved. :)

Status 1A -- Let the wait begin

Owen did well last night.  Carson, Kam and Logan got here close to midnight. It was great to be reunited and spend time with my other babies.. if only for a quick kiss before sending them off to the hotel.  I stayed up until 2am with Owen because he just wanted his Mama.  He couldn't be too sedated because his BP is so low so I am grateful that he is so calm.  He has been communicating with us well.  Asking to brush his teeth, tells us what he wants and he LOVES to have his ventilator tube suctioned.  (With a breathing tube you can't hear the person speaking so we are great at reading lips.) He asked what was going on and I explained things fully as they are happening.  He responds with a wicked smile or a big thumbs up.  Bravest boy ever! 

 

Owen is still very critical.  He was relatively stable overnight.  This morning his HR jumped from 130 to 155 and he has sat there the remainder of the day.  He has had moments of poor perfusion (cold legs, feet, hands) and fevers.  He is getting a Fentanyl drip to keep him comfortable.  He is on Epi and Dopamine for his heart.  He is getting a drip of Heparin and we are checking his heparin levels often trying to get him up to a therapeutic dose.  He is still getting a giant dose of Plavix and Asprin as well.  We started TPN and Lipids for nutrition this afternoon as well.  These are in addition to his anti rejection medications and IV Tylenol for the fevers.  He has an ART line, Central line, PIV and tonight I scrubbed in while we had a PICC placed.  He has tons of access for anything that may come up but we obviously have to watch for infections too. 

 

We had a long talk with Dr Rosenthal today.  It was decided that the VADs (Ventricle Assist Devices) are not a good idea right now.  The risk of infection and putting his body through another open heart surgery right now is not going to give us a good outcome.  The plan is to continue with medical management and see how he does over the next 72 hours.   

 

The team held an emergent transplant conference this morning and after signing consent.. we got him on the transplant list this morning as status 1A!  He is at the top of the list and all we can do is wait for a donor heart and trust in God's timing.  In a perfect world his heart will recover to where it was before the cardiac arrest yesterday.  He won't recover, but he could stabilize and even be extubated while he continues to wait.  In a best case scenario. 

 

I am going to continue to stay with him bedside and sleep in the unit so I am nearby.  Carson is at the hotel with the kiddos.  Carson's dad and Monica flew in today from AZ.  My parents and Gigi are driving up now.  Larissa (Carson's sister) and her family are taking a detour out our way and changing their entire summer camping plans to be here.  My sister will be here next week. Janessa took the kids to the mall today and played with Logi in the playroom for a while (which he loved).  I got out for a while today with my other babies and we did lunch.  It was nice to get out of the environment even if it wasn't for too long.    The support has been incredible from family, friends and the prayers are felt so strong.  You walk into Owen's CVICU room and you feel peace and calm all around. 

 

This boy right here is a miracle... a blessing.  He isn't giving up...

Now that we know we are here for the long haul... my sister did set up a GoFundMe account in Owen's name.  We have never fundraised before but we have never been in this situation, away from home, for an unknown amount of time.  Just want to share it..   Hugs and keep the prayers coming.  There is another miracle coming...  I know it!

 

https://www.gofundme.com/267bhd8

 

Owen has his own Facebook page as well for anyone that wants to follow there for updates.

https://www.facebook.com/OwensSuperheroHeart/

Blink of an Eye

I am breathless and feel numb. Call it shock.  The positive news is that Owen is fighting with everything he's got.

All day long Owen has been sleeping off and on.  He hasn't wanted to eat much and has been pretty moody.  He was due to be discharged this afternoon and we were planning to head back to AZ tomorrow.  Mother's intuition told me that he was not okay to be discharged and his echo proved he was just not stable.  Still.. I shed a few tears when Rosenthal told me he would feel more comfortable if Owen stayed a few more days just to be monitored until he was feeling like himself.  So I cancelled airline tickets and extended our hotel reservations.

At around 5:00 tonight Owen asked to get out of bed to go for a walk.  As he stood up he cried out in pain so I put him back in bed.  He quickly turned blue and said the pain was unreal.  His nurse hit the code blue button and he coded.  God's timing was perfect as every doctor in the CVICU was just outside our room as they brought Owen's roommate back from the OR.  I have never seen so many people more so quickly and Owen was quickly resuscitated with chest compressions.  They placed a central line and let me come back in to see him before intubating.  He was "stable" and he asked me what just happened and wanted to know what was happening.  I told him Daddy, Kam and Logi were on their way and that he needed to stay strong for us.  He said I love you and I told him he was headed back to the cath lab. 

The entire cath team, heart failure, transplant, and CVICU team were still in the unit and there were at least 20 members of his team.  Doctors that know him inside and out.  Included was a cardiology fellow that was with him every step of the way last spring at PCH while he was on ECMO.  She was able to answer all the previous ECMO access questions without a hitch. 

My world collapsed in when I heard there was probably not going to be much they could do for him and that he was most likely not going to make it. If he coded again, he would pass away.  They were hoping to find a clot in the stent in his coronary but knew that was a one in a million chance.  He was on a ton of blood thinners and the stent was placed yesterday.

I walked with them to cath lab and sat outside the doors waiting for them to call me back and tell me he is was dying.  A couple of heart moms were shoulders to cry on and the social worker got Carson's plane tickets arranged and covered.  Every tiny miracle that could be fell into place.

His entire stent was completely occluded which is unheard of.  They busted the clot and they are starting him on TPA and Heparin.. as well as Asprin and Plavix.  We will do everything we can to keep it from clotting again.. but he is very unstable.  The right side of his heart also has severe coronary disease but we can't do anything to help it so that also could have played a vital role in what happened. 

He is still here and kicking ass!!  They took him down for a full body CT to check his access because ECMO doesn't seem to be an option due to occlusion in his veins.  They also had to check his brain for bleeds from the code.  If all looks well we should be able to list him for transplant SOON.  We have options.  All very HIGH RISK, but we have options.  Just a few hours ago I was signing consent with the very real thought that I would never see my boy again.  I will not be leaving his bedside and I have a bed inside the unit if I need to rest tonight. 

Carson and the kids will be here before midnight and my sis-in-law Janesa drove down from San Fran to be with me.  Keep the prayers coming.. he is not out of the woods and there is no way to know if this will happen again.  Coronary Artery Disease is not going to take him down! 

Right now I am exhausted.. physically.. emotionally and I have cried every last tear I have.  Keep the prayers coming. 

Stent Placement Recovery

Owen did great in the cath lab. The stent was tricky to place but they got it in.  Owen's heart looked even worse than it did a week ago.  His filling pressures were significantly higher than they were last week.  Yesterday was an awful long day.  They brought him to the CVICU and he took longer than usual to wake up and was happy for about 10 minutes before reality hit.  He was so emotional and kept saying how dizzy he felt.  He was miserable so he begged us for something to help him feel better.  We gave him a small dose of Ativan which knocked him out cold for just a bit and then he woke up a little loopy and sad.  Turns out the anesthesiologist gave him Fentanyl with the Propofol and he doesn't do well with Fentanyl.  Poor guy. :(

He ordered food off the menu and hated it all.  Then Auntie Janesa came for a quick visit.. it was so good to see her and I'm bummed we didn't get a picture.  I ran out to grab him some Chipotle but he didn't feel like eating a bite.  I stayed bedside until about 10:30 when I knew he was asleep and ran back to the hotel for a quick nap.  The nurse said he woke up a lot and just asked to watch tv and I was back by 5:30 this morning.  He has been sleeping off and on and just not himself.  I'm not sure what's going on and we are still waiting on his Echo before discharge.  His labs were reflective of how he feels, which isn't surprising. 

In rounds today we discussed med changes... increased diuretics, added Asprin to the Plavix and ditching all the meds in the Zole family (Omeprazole, Fluconzole) because they interact with the Plavix. We had a long discussion about his poor weight gain.  I'm really going to have to push his feeds to get him to a healthier weight so he has a better recovery post transplant.  His poor tummy just can't take much more.. but I'll have to find a way to sneak it in... this is WITH Gtube feeds around the clock. 

We met with the social worker and transplant psychologist today to finish up the transplant eval.  He will have a Cardiac CT in Phoenix in two weeks and then they will present him at transplant conference next Friday.  It could be a few more weeks before we are able to list him as status 1B on the transplant list because the Sirolimus level has to be completely out of his system.  The good news is that Zangwill and Rosenthal are fantastic communicators.  Not only that, but Owen will be able to wait for his heart at home, in Phoenix, while listed at Stanford again. 

For now.. this little guy needs all the Mama love he can get.  He is just not loving this hospitalization and is feeling super ick.  He is completely out right now so I'm hoping he can sleep it off a little more.

Thank you for all the prayers.  The last week has caught up to us both and we are emotionally/physically drained.  Kam is back home taking care of Mr Logi (thankfully school is out) and Carson is working.  I think the Simmons' family needs a vaca in the near future! :)

Cath Lab -- Stenting of Coronaries

We made it to Palo Alto late last night and Owen is now in the cath lab.   He was the second case of the day so we didn't head back until 10:30 this morning.  He is really looking forward to this stent being placed and says he hopes it makes him feel better.  Poor guy has been feeling a bit worn... mostly when he walks around a lot or physically exerts himself.. it doesn't take much. 

We stopped his Coumadin for good and started him on Plavix this morning.  He had his first dose before heading into the cath lab.  He will be admitted to the CVICU (Cardiac ICU) after his cath and will stay at least one night.   Parents can't sleep in the CVICU here so I'll probably head back to the hotel for a quick sleep tonight and I'm sure if he has a super awesome nurse he won't care one bit.

Send prayers Owen's way.  This procedure is a little more risky than the others he does because they are placing a stent in his coronary arteries and we aren't even certain it will help at all.  This isn't a fix but more of a band aid to buy him some time.  I'm not sure of the next game plan yet....

We had a great time traveling yesterday.  Owen just seriously finds so much joy in the entire experience.  From buying a croissant and broccoli soup at Paradise Bakery to picking his seat on the plane.  He just makes everything exciting!   Here's to a fun evening in the ICU.. I'm sure he'll have Child Life bringing him video games and legos to play with.  Life of Owen is a good life. :)

Biopsy Results

Today was a LONG day of waiting... 

Owen's biopsy results came back with ZERO cellular rejection.  His Antibodies came back close to zero and all samples were sent off to Stanford for more review.  We were finally discharged around 3:30 this afternoon.   I spoke with his NP at Stanford and they are received all the cath data via overnight mail this morning.  They will be making big decisions in the next day and we will have a game plan.  Zero rejection is good news as always, but that means his heart failure and elevated BNP is all related to the Coronary Artery DIsease and there is no fix.

Owen had a decent time in the hospital.  When Child Life came by this morning to meet Owen he said.. "I'm a LIVING LEGEND!"  Later in the day I came to his room and found this awesome cape that Child Life created for him... how creative and thoughtful is that?!  A few volunteers from Phoenix Theatre came by and told him a super creative, acted out story that Owen helped create.  It was pretty amazing and he loved it!  When asked by the actors where his favorite place to go would be.. he responded with "to the hospital!"  Then they asked his favorite thing to do (read books, watch movies, ect).. he replies with "I LOVE anesthesia!!"  Ummmmm...  at least he is loving his life.

We have discussed everything with him and he is totally on board for his next journey.   He is mostly excited to live at the RMH in Palo Alto again.  I will post again tomorrow with a plan.  Thank you for all the kind messages of support and prayers.

Coronary Artery Disease Wreaking Havoc

It is 7pm and we are settled into the CVICU for what is expected to be a quick stay.  I had a long chat with Dr Z today and he had a long chat with Dr Rosenthal.  Owen's coronary artery disease has progressed significantly in just the past 4 months. His proBNP (heart failure number) was elevated to 13000!  Normal is under 100 and he has been sitting at about 2800 for the past year.   He is at risk for arrhythmias and cardiac arrest due to the large blockages.  We need to get the biopsy results back from today to see if we are dealing with rejection or if the coronary arteries are the only issue.  Then we can come up with some short term treatment plans.  The big picture is that he will need to be relisted for transplant and soon.  I'm a little heartbroken but I know we can totally conquer whatever we need. 

Short term treatments could be ballooning the coronary artery to buy him time while he waits for another heart.  An implantable defibrillator while he waits for transplant.  I'm not sure if he would be able to wait outpatient or inpatient.  It's all kind of up in the air.  We are working with Stanford and Phoenix to come up with the best plan but we will see what tomorrow brings.  Tonight we are having a sleepover in the CVICU.

Owen relaxed and made it through the long six hours of laying flat.  He has eaten a billion buffalo chicken wings, pretzels and peanuts.  I'm pretty sure we will both crash early.  It has been an exhausting day... to say the least.

I didn't miss this view that we had for five weeks last year in the same exact unit.  I am amazed we had another wonderful year with his perfect heart.  We know now that things won't improve.  Coronary Artery disease is not reversible and it's time to take the next step.  God's timing has been perfect in Owen's life thus far and I have no doubt that he is guiding the next moves.  Thank you for all the prayers and good thoughts that you have sent.

Biopsy/Cath

 If you don't follow on FB (Owen's Superhero Heart)... Owen had a routine echo yesterday as a followup to his biopsy (1b rejection) from two weeks ago.  The echo showed further dysfunction and increased valve leakage.  His Stanford team decided it was best not to have him travel commercially.  We were given the first case this morning at Phoenix Children's for Owen to go into the cath lab for biopsy. 

They were super awesome and let me bunny suit up and walk Owen back to the cath lab.  I gave him his fruit cocktail mask to put him to sleep and he was a rockstar as always.  I'm not going to lie.. I'm totally concerned.  

Dr Graziano just came out and said Owen was perfect. He was extubated and headed to recovery.  We are still unsure if he will stay the night or go home.  His pressures were increased a bit from two weeks ago and he gave me pics of his coronaries.  I see additional blockages from January but I can't confirm until I talk to Zangwill.  Here are some photos...

You can see the narrowing on the first branch of the LAD next to the 2nd sternal wire down.

 On the right coronary, you can see the narrowing between the last two sternal wires.

I'm still waiting to talk to cardio and we are in recovery for six hours while Owen lays flat and watches Spy Kids.  He is chowing down on pretzels, peanuts, soup and Dr Pepper.  The nurses can't believe how easy he is.  Nothing will take this Superhero down. 

I'll update when we know more...

No AMR and Mother's Day

I already posted on FB, but I wanted to say the best news of the week was that Owen's biopsy result came back from pathology and he does not have AMR (Antibody Mediated Rejection).  The plan is to just treat him with increased meds and we will follow up the first of June for a repeat annual biopsy.  So sorry it took me so long to post here.  I get online to post and then I get ADD and end up on Facebook or start tackling my "to do" list and then I forgot what I was doing in the first place. 

Mother's Day weekend was wonderful!  On Saturday, Gma Monica and Gpa Todd took all the girls to brunch and to see Annie on Broadway.  It was their Christmas gift this year and they looked forward to it for the past five months.  Kam felt super crummy but didn't want to miss out.  I ended up picking her up just before brunch and she never did make it to Annie.. poor girl.  She was so miserable.  Now that (almost) a week has passed and I have caught whatever junk she had... it's awful.  I don't know how she is functioning at school and with dance this week.

Sunday was Mother's Day and wecouldn't wait to see the newest Marvel flick.  Owen has been talking about it non stop so we went to the first showing of the day... which also happens to be naptime.  Logi slept through 95% of the movie (thank you son).  The biggest Marvel critic (Owen) gave it two thumbs up.. and he won't stop talking about the previews for the upcoming movies.   

We spent Mother's Day with my fam at Nana's house.  Kelli went and picked her up from the nursing home and we had a great time. I love taking selfies with her because it's the only time she'll actually look at the phone or camera.  :)

Here is my mom, Sis, and Nana... and of course I'm making my creepy selfie face because I always do. Selfies are a skill and I am challenged.  Betty has a wicked shiner because she fell pretty hard last week.  She can pull it off though.

Here is my Sis and her girlies.  I should have gotten one with Mom and Gigi... next time.

My favorite little three people make me the happiest mom alive. I am so thrilled they are mine and I get to spend my days with them.  My only wish is that I could pause time just for a second.  They are growing up so fast.

We are counting down the days until school is out!  Kam only has one full week left and we are FREE!!!  It's getting hot and it's time for a break.

Biopsy Findings -- 1B Rejection

Owen's biopsy went well and had a quick recovery (as always).  We were discharged before noon and I pushed him around the Stanford shopping center for a while.  The weather was perfect, sunny and breezy.  Owen insisted on buying peaches at the Farmers Market and that's all he wanted for lunch.  We headed back to our hotel for some Sprinkles cupcakes and Spongebob.  I convinced him to venture out to grab pizza for dinner and we called it an early night.

This morning we had a nice long clinic visit  with Dr Rosenthal and Nancy. The best news of the day is that Owen is up to 21.5kilos (47.3lbs) and 122cm (48inches). He is FINALLY surpassing his plateaus and growing thanks to 2200 cals/day.

His preliminary biopsy results came back with a score of 1B... he has been 0 and 1A before, but never 1B.  The pathologist was staining the slides and looking for AMR (antibody mediated rejection) now as well, which is usually the cause of a 1B score.  They are letting us come home so it's not something that is immediately dangerous, but SO glad we did this biopsy or we wouldn't have known about it.  Regardless, we will most likely need to return in a month for another biopsy.  If it is AMR, we will need to do some more extensive antibody testing and I pray we don't have to start IVIG again.  If you remember, we did IVIG monthly for almost 2 years (15 months pre transplant and then about 8 months post).  We will know more in the next couple days.

His echo looked the same (not terrible, not great) and his pressures in the cath lab were good.  He still has the elevated HR (135-145) and so we are going to push the Carvedilol dose up to 25mg/day.  We discussed starting Digoxin, but decided against it.  His ANC *neutrophil count is low (just under 300) so we may need to tweak some meds and just watch him for infection.  His Prograf and Sirolimus (anti rejection  med) levels were within range for the first time in months.. they have been so high!!!  We will redraw labs Monday to check his CK (creatine) levels before starting him on a statin (to potentially help CAD). 

Aside from all the medical jargon.. I loved when Dr R said.. "I hope to be having this same conversation a year from now.. even two years from now."  While we are pretty sure his heart won't improve at this point, we hope to prolong the inevitable (retransplant).  I feel like we just need to enjoy the moment that we are in and that things are relatively okay.  We all know that things can change in an instant.

After our clinic visit, Owen got to experience the six minute walking test.  They took BP, O2 and HR before his walk and again afterwards.  He was exhausted after walking six minutes straight.  I can't tell if it's cardiac exhaustion or if it's just overall muscle deconditioning.  With the help of a little Green Day on his iPad, he walked without complaining and got the job done. ;)

We are now at the airport enjoying more cupcakes (not me.. those other two are for Logi and Kam!)  I'm OCD so we get to the airport WAY too early every time.  Thank you for all the prayers and I'll update again in the next 48hours when I hear the final biopsy findings.

Biopsy Time

We are back at our second home in Palo Alto.   We had a late night of traveling last night but made it to bed by 11 last night.  Owen was first case in the cath lab today and he was a rockstar as always.  As soon as we walked into the cath lab he stopped everyone and told them he wanted to say a "blessing" (prayer).  He said the sweetest prayer ever and had us all smiling.  He will do great as always but keep the prayers coming for our little Superhero.  :)