Three Weeks

Today was another busy day for this Superhero.  After morning rounds with the docs, I gave Owen all his meds and Daddy showed up.  I needed a break from hospital life so I left to go do 'normal' things.  Grocery shopping, scrubbing the house, catching up on laundry and snuggling Logi in bed was just the therapy I needed.  I picked up Kam from school and felt recharged.

We decreased Milrinone, increased Carvedilol, and increased Enalapril.  Owen did PT, school and was out of bed the majority of the day.  Uncle Rustyn visited and Daddy played with him all day.  He is totally wiped out right now and won't even touch his dinner he looks so tired.

Tomorrow, I believe the plan is to turn off Milrinone and do an echo.

Busy busy.  I cannot believe it's been 3 weeks!  The events of the last 3 weeks seem surreal.

Passing Time

Today was another busy day. Owen was up at 5:30 ready to start his day!  He was up and walking around the room with all his tubing and wires in tow.  He sat on the couch, ate some breakfast and had a relaxing morning.  His tummy usually hurts pretty bad in the morning until about 11.  I am guessing its a combination of all his meds making him feel ick.

By 11am, he was ready for Physical Therapy.  It is amazing watching him get stronger each day.  He went from barely able to stand to walking all over  his room and squatting down to pick things up.

He loves to send me downstairs to Starbucks for hot cocoa and croissants.  He doesn't love food off his menu, so he sends me down for the good food in the cafeteria.  He is pretty funny and keeps us laughing all day.

Mr Logan has been such  a trooper.   He just kicks it with us all day.

Today, Larissa did our grocery shopping and picked up Kam from school.  She brought the kids down and Owen whooped them all at UNO.  His belly laugh is so great and the monitors go off because he laughs so hard he isn't  breathing,

This is just a moment of my day in the hospital.  It is busy!  Traumatic at times.  Owen has a tape phobia at this point from all the dressing changes.  It has been 45 minutes of convincing him to remove the bandaid from his femoral site.  It isn't always fun around here but we make the most of it.

Kam and her baby brothers...my heart is full!  I can't wait to have my family of five under one roof again.

Today we just decreased Prednisone, increased Carvedilol and added Valcyte.  Nothing too thrilling.  Tomorrow, I believe the plan is to wean off Milrinone and echo Friday.  Meanwhile...we stay busy and pass the time.

Day to Day

I have been pulling double duty with Owen and Logan at the hospital all day. After 2 1/2 weeks off work, Carson was ready to get back! Kam has been super busy trying to get through the last 3 weeks of her freshman year while keeping up her 4.5gpa. She is amazing!

Owen's echo looked a little better on Monday.  His heart atill has a ways to go, but its improving a little at a time.  We spend our days tweaking meds and optimizing therapies.

We removed his arterial line yesterday, so both arms are IV free!  He just has the tunneled central line in his chest now.  He is on only one infusion of Milrinone and we are weaning that a little at a time.

There was concern last night that there may be a clot in his left atrium from where the ecmo cannula sat for 13 days, but today's echo was clean!

I honestly don't know what we do all day but hospital time flies by.  Owen has PT once a day, and I make him get out of bed at least 5 times a day.  Today we ditched the Pampers since he can finally get up and walk to the restroom.  It's the little things that make a huge difference.

Owen is chowing down all day thanks to the steroids.  Daddy blends his super healthy food in the am (salmon, kale, quinoa, ect) and I inject into his gtube every hour all day and night.  It's  tedious, but good nutrition is key in recovery.

Last night before shift change we moved into another room in the cvicu.  It was super clean and the sink works!  (Our sink broke in our old room)

Owen got this awesome Captain America Build A Bear from a neighbor and a get well card from the folks at BAB.  They recorded Chris Evans voice message into the bear so he can hear it when he presses the paw.  His bear also has a heartbeat.  Very thoughtful!

Our nurse brought a mat in for Logan to play on.  I laid Logi on his back this morning and  turned around to see him on his tummy playing with toys.  He is so strong at 4 months!  He was all over the mat and ready to explore the room.  Time  to get out of the hospital before he is mobile!

I never did a proper 4 month post for Logan but he is doing great.  He is 17lbs and super long!  He is growing out of his 6 month clothes and is apparently able to roll over from back to tummy and back again.

We don't know what is happening from day to day, but everyone is blown away by Owen.  His positive attitude and funny personality helps us all get through each day.  We play board games, card games, entertain visitors, eat snacks, do crafts, read books, watch movies and dream about the day we get to go home.

Baby steps.

The Perfect Gift

It was July 16, 2013 when we got the call..."We have a heart for Owen."  The adrenaline hit and then the tears flow.  The emotions flooded in...joy, anxiety, fear and hope.   Owen was finally going to get a new start and for the first time in his life...know what it feels like to have a healthy, functioning heart!

After waiting 327 days on the transplant list, a perfect match was found. 

With each signed consent I would break down in tears.  I was grieving  so deeply for a family that was saying their goodbye.   They were signing consents of a different kind.  They were donating their daughter's heart.  A heart of an Angel.

Meet Alyson 'Aly' Rose DeFur.  This beautiful girl's heart beats inside Owen.  

A little girl who loved Jesus with all her heart.  She was a princess and loved to dress up in all things girly.  She was a stranger to no one and said "hello", with a wave, to anyone that caught her eye.  I see a light in her eyes...the same one I see in Owen's.  A love of life and pure joy

We will forever be grateful for the gift that  Sarah and Tom gave us.  We can't wait for Owen to meet them and Aly's two little brothers.  One heart meant for two perfect children .  Thank you to Aly's family for allowing me to share.

Passing Time

Owen has been doing great! He is official weaned off of Epinepherine as of last night. Things look okay. Tomorrow morning he will have another echo, the first once since coming off ECMO, to look at his cardiac function. I have high hopes for even a little improvement.

Today we started Owen on Aldactazide.  It is a new med and the first one I had to research.  All the other medications he has been on in the past, used to treat heart failure, or immediately post transplant.

I found some photos on my phone that I haven't posted.  Owen loves visitors!  Well..most of the time.  He isn't afraid to say "it's time to leave."

Gigi loves chatting with the medical team and playing nurse.

The little girls were a bit nervous.  My sis told them the ECMO circuit were red hoses.  Owen was quick to twll them it was hos blood!

Connor and Uncle Rustyn brough Owen some cool comic books.  I love that Owens biceps are just about as big as Connors.  Skinny bones must run in the family.

Kam goes to school with her cousins so Auntie Sussy brings them straight up from school.  Owen gave them all tattoos that Jean  gave him.  Then he tattooed my parents, Uncle Rog and Gi.  He loves those tattoos!

This little squish loves to visit!  Its so hard to be apart from this little guy.  He visits often and I went home to sleep and snuggle him last night.  Thank goodness for private rooms in the cvicu and sibling restrictions have been lifted .  

We are taking baby steps in the right direction and keeping busy to pass the time.  Owen is in great spirits and just needs a little nudge here and there to want to get out of bed.  He has lost every ounce of muscle he had, which wasn't much, so he has a lot of rehab moving forward. 

"Rich, Famous and Brave"

Owen had another great night! His numbers all look really "encouraging." I got a call last night that we moved Owen to status 7 on the transplant list. This heart is going to recover...I have a good feeling. He has a guardian angel watching over him and Owen knows he was gifted a perfect heart (almost) 2 years ago. It is still so unreal that 3 weeks ago he was totally fine. He went from a tummy ache to an echo showing severe cardiac dysfunction to ECMO support within 48hours.

I am amazed at how brave he has been and his maturity through it all.  He is going to have some serious battle scars to go along with his many others.  Scars that tell his story of courage and strength.

Yesterday, a friend sent me a link to a People.com article ...surprise. ..it is Owen!  He felt like such a rockstar and has been so excited to tell all his nurses  and doctors.  I am pretty certain he has no idea what People is at 7years old..but he loves to get a reaction.  The story is not totally accurate but I suppose I am to blame.  It looks they gathered info from my blog under Owen's bio on the sidebar.  I havent updated my layout in forever..so it was outdated.   I have it updated now.
http://www.people.com/article/chris-evans-captain-america-get-well-owen-simmons

This morning Owen asked me to count all the money in his "piggy bank".  He has been hitting up visitors, nurses and doctors for 2 weeks!  The grand total was $183!  Can you believe it?  To a 7 year old that is just about as great as a million!  His smile is worth every penny!!

The plan today is to try and wean Epinepherine  again.  We will also change all his dressings and give the stinky boy a bath.  Spa day in the CICU!  Happy weekend!

Trial and Error

Owen had a pretty good night.  Daddy spent the night and they watched his Batman movies that his heart buddy brought the other night.  He loved them!  Report was he slept well and he is feeling great this morning.   Before I left last night we had to restart his Epinepherine.  His belly looks distended (bloated), his renal sats dropped and his central venous pressures increased.  They decided to restart  Epinepherine  and all levels improved.  Dr Z came in this morning for assessment and said "we have a long way to go."  We are very aware that things are hour by hour at this point.  

The plan today is to leave Epi alone, wean milrinone a bit, add Captopril back, stop Lasix drip, and wean off oxygen as tolerated.  Each day will be trial and error until he is eventually off iv medications and on oral.  Like Dr Z said..this is going to be a long road to recovery with no guarantees there will be a good outcome.  Baby steps in the right direction though.  

Owen already did PT today and just ordered chicken for lunch.  Keeping him in a routine and busy is our job.  Logi is going to think hospitals are normal places to spend his days.  Thankfully he is totally chill and happy the majority of the time.  Kam likes to hang out after school  and the teen cousins discovered the hospital teen room and starbucks.  This is our life right now and we are starting to find our routine.  We are still hopeful for a full recovery  and we are prepared to be patient.

Moving Right Along

Owen had a great night!  He was up at 3am watching Minecraft videos on youtube while playing with his fancy Lego Hobbit set.  He was so excited got his Lego set built for him yesterday because he knew I would never conquer that 900 piece  set.

He woke up today feeling "like a million bucks!"  He sat up in bed, played Legos, and ate jalepeno chips.  At rounds we discussed the plan today.  We take things day to day around here.  We are weaning off the Nitric he has flowing in his oxygen cannula.  We weaned off the Norepi and will hopefully get him off the Epinepherine by tonight.  He is getting extra magnesium and calcium via IV, along with lasix (diuretic) and Milrinone.  That is it for today!  We are still in a critical place from a cardiac standpoint.  Owen tolerates heart failure well so looks can be deceiving.  His heart has a long road to recovery and transplant is still in our back pocket as an option.  For now...plan A..rehab of his perfect donor heart is the path we are on.

Owen got out of bed and stood for the first  time in 15 days!!  He said it felt amazing!  PT did about 10min with him, which was all he would tolerate.  We got him moved to the chair and he is eating some pizza and watching a movie.  He is starting to run on a short fuse so I am hoping a nap is in his near future.

Tonight i get to swap daddy out for a night in my own bed.  I need a little time with Logi and Kam too.

Decannulation

Owen is off ECMO!!  I took him to the OR at around 1pm and the anesthesiologist  allowed me to scrub in and stay in the OR until he fell asleep.  It always works better for Owen to avoid pre-medicating him, when all he needs is his mom for reassurance.  We make a good team.  He was brave!  We sang Jingle Bells as he fell asleep and he said  our nightly goodnight routine.  "I love you, I  love you more, I love you most!"  

They were able to place two central lines in the OR.  He had developed a hematoma on his chest where the ECMO cannula was placed.  That seems to have resolved itself as well.  His heart function looks "moderately" depressed.  Not perfect, but a huge step up from "severe."   The next 24 hours will be telling so the prayers need to keep flooding in!

When he was brought up from the OR intubated, the plan was to keep him comfortable until morning.  The sedation meds were making him more and more agitated and his numbers were looking crazy. (Higher HR, high CV pressures and increased BP)  After fighting us and yelling  at us over his breathing tube, we went ahead and extubated.  The first  thing he said was  "thank you".

He is now resting comfortably.  His numbers all look perfect  and his blood gasses just came back fabulous.  His chest xray was just as pretty with crystal clear lungs.  So prayers have been answered, but we still have a long ways to go.

Owen is on many IV drips that are helping his heart along with many oral transplant medications.  The hope is to change his status to 7 (inactive) on the transplant  list if things continue progressing in this direction.  We have options and everything looks promising.  As we know..things can change in an instant.  I am on edge tonight as I am certain I have a little PTSD from the past two weeks.   Pray for a good, stable night filled with rest and healing.

I am so happy I was surrounded by my fam today.  They helped to keep my mind off things and my heart is aching to be together again.

Today was a huge success!

Message From the Captain and PRAYERS!

Owen had a pretty great day! It was made even better when he got this super thoughtful video message from Chris Evans. Owen LOVES Captain America and has been counting down the days until the new Avenger movie comes out on the 1st of May. He will have to wait a while longer to see it now, but this video made his day!! He was so excited to send a video message back so I included those since he is so sweet.

 Tomorrow is a huge day. We booked the OR for late morning and we just all hope and pray he can come off ECMO support smoothly. There are many risks involved and we aren't certain his body will tolerate it. He may or may not come back on ECMO support. Owen is nervous for tomorrow so lets cover him in prayer. It will be a big day! I know his heart is so strong. His angel, the sweet girl who carried this strong heart for 4 years, is by his side. Lots of prayers!

Options

Mr Owen had a long night.  He was fighting sleep because "everytime I go to sleep, I wake up to everyone changing my bandages or I'm bleeding."  OUCH.  My mommy heart was so sad for him.  We finally convinced him to rest and watch a movie and he drifted off to sleep around 4:30am.  He just lays in bed and shivers.  I'm sure he is part cold because he isn't up and moving around to keep his body warm.  Another part of it is that he got a few small doses of Ketamine yesterday.  Once during the ECMO trial and the other during the cannula dressing change when the surgeon had to place some stitches.  I am still in awe at his bravery to lay there and talk to us while getting stitches in his neck.  There was so much blood too.  So grateful I don't get queasy. 

On the bright side... today is a day of total relaxation!  I requested to have a child psych come by and visit with Owen to help him process everything.  Not that he isn't doing an incredible job on his own, but I think it can only help.  Also, I will work with Child Life to create a daily schedule so that he has some predictability to his day... Meds, PT, School, ect. 

I spoke with Dr Zangwill and he explained where we are at moving forward.  We plan to pick a day, tomorrow or Thursday, and just go for it.  We will do a wean off of the ECMO circuit and see how it goes. 

Option 1:  He comes off ECMO and tolerates it just fine.  We work to get him off of IV meds and on home meds and watch him closely. 

Option 2:  He comes off ECMO but struggles.  This will be the toughest because we will have to decide to transplant vs rehab the heart and we will really be at a crossroads.

Option 3:  He fails miserably coming off ECMO and his heart just can't tolerate it.  We will them keep him on and let him ride ECMO until his heart recovers more or he gets a perfect heart offer.  They are getting offers but nothing is right yet. 

I will know more when we plan to try again.  I just want to make sure his little body is rested and ready for the big day.  SO tonight we will give him a bigger dose of Melatonin and hope that it helps him sleep well.

Prayers for his little spirit to be lifted up.. it's hard to be in that bed and not moving.  None of us knows what it's like to be on ECMO and so alert.  He is just such a Superhero kid.  Everyone is beyond impressed by his courage, thousands are praying for him, and I know that things will be okay. 

Bleeding

This little superhero is finally resting tonight.  It was a long, exhausting, emotional day.  Day 12 of being inpatient is taking its toll.  I cannot even imagine not being able to move my own body or even  get up out of bed.  He has to ask to have his position changed or to scootch higher.  We are constantly drawing labs on his lines, pumping him full off iv meds, giving him lots of oral meds and gtube feeding him for nutrition.  Docs and nurses come in and out and feel his liver and toes, then listen to his heart.  To top it off he is on ECMO, wide awake, and in heart failure.  Today he just cried and said how emotional and frustrated he felt.  He needed to get it out.  His feelings are more than valid.

We woke him from a nap this afternoon because his ecmo cannulas were bleeding so much it saturated his pillow and back.   His labs looked within range and we had given him platlets last night to help too.  After changing the dressings on his neck and leg, the neck continued to bleed.

We called the cardiothoracic surgeon in tonight to look at the site and ended up needed to place a stitch.  We gave Owen a little Ketamine and he was comfortably awake.  Brave doesn't  even define him tonight.  He just laid there as Dr Nigro placed stitches in his neck and the only thing he kept saying is "where is my mom?  I want my mom."  I am so glad  they let me gown up and stand there to rub his hand and watch.  There were no tears and he was tough.  He wasn't a fan of the Ketemine as it wore off so we uaed Ativan to help.  Now he is sound asleep.

Here is to a new day tomorrow.

ECMO Trial..10 days on ECMO

A 3am wakeup call due to arterial lines bleeding was not fun. We had to increase heparin levels in anticipation  for a trial off.  We were able to change  dressing on femoral line and left wrist and Owen was so brave. I was so happy to see him get solid rest from 4:30am until 8. He woke up and said "I feel great today!"

 There was plenty of discussions at morning rounds. We decided to do another ECMO trial with echo. His left vent ejection fracture looks better, his lactaid  is down and his labs look good. All good things. Owen tolerated the wean today..no nausea or feeling awful like he did Thursday. His hemodynamics didn't change all that much either. We clamped the LV and turned down to minimal support. After gathering data the doctors discussed briefly and decided to let things be until Wednesday. He is still on his original ECMO circuit and its looking good. If something went wrong with the circuit then they would feel okay taking him off and crutch him along. Hopeful he just needs a couple more days. Everyday shows a little improvement. We are going to be patient.

He is always cold, but I am told its because he isn't  up and moving his body around.  It makes sense.  They cam control the temp of the blood circulating  through the ECMO machine which is so cool too. He ate a half of turkey sandwich which was more than he ate all week orally.  He is getting 1400 cals in his gtube so nutrition is my focus.

The team is all split up in cath labs, clinic and OR right now but will.meet up in a couple hours in conjunction with Stanford.  There will be a clear game plan made then.  I just didn't  want to leave everyone hanging.  Prayers continue.  I know this heart can heal!  We just need patience.  Its amazing not only how well Owen tolerates being  on ECMO, but how well the circuit is behaving.    All good  and positive things. 

Goofball

Today was a great day! Owen got a good night of sleep last night which made a world of difference. Add to that a 2.5 hour nap today and he was in great spirits. We had no visitors and i think he needed a down day. My dad brought his WiiU up early this morning so he had video games which "made my day 50% better!" Daddy was here for a while today while I went home to work on the house (major stress relief) and spent time with Kam and Logi. I am back tonight and Owen is silly as ever. Selfie time...

We decided to not mess with his ECMO this weekend and let his body have to rest. We also have him up to 1500cals a day of salmon, avacados, kale, quinoa and other good stuff via gtube. We are doing everything we can to optimize his health. He is obviously in critical condition despite his amazing attitude. Tomorrow is another down day and we are hoping for a big successful wean off ECMO Monday.

Another Eventful Day

Today seemed uneventful compared to yesterday, but it was still so busy. Owen's echo from this morning showed no significant change so we decided to let him rest.  He only slept for about 5 hours last night off and on due to PICC line dressing changes (the line was not working) and 4am chest xray.  The little man is exhausted!!  We did take out his Foley Catheter, removed his oxygen (again), took the monitor off his head, and got creative in allowing him more freedom with his hands without compromising his IV access in his hands.  He has an ART line in his left wrist, a PICC line in his left forearm and a Peripheral IV in his right hand.  He ate a little orally, but we started him back on his super nutritious blended diet (thanks Daddy for whipping that up)!

Owen's ECMO catheter site on his neck was leaking blood so we had no choice but to change his dressings again.  It was HORRIBLE!  We did it last night and I prayed we never had to put him through that again.  They have to secure it well so there is a lot of tape and that causes skin breakdown.. think of your skin coming off with a bandage in areas.  Then we have to disinfect the area and it burns like alcohol.  Even with iv pain meds on board he was screaming.  All I could do was hold his hands and tell him it was going to be over soon.  Thankfully the nurses worked quickly and we got it redressed and secured.  Then the rest of the afternoon, into the evening, he was feeling out of it and just plain crummy.  He didn't want any visitors and so I stood bedside for a couple hours and just read him books.  We watched a little Captain America on tv and I mostly gave him some space.  He is so, SO tough!  At 7pm I gave him a little Melatonin and he was fast asleep 30 min later.  We moved his chest xray order to later in the morning and his nurses are so sweet and quiet tonight.  They will allow him to sleep as much as he needs.  Tomorrow is a new day.

 My sis found this in the gift shop for Owen...

This little squishy came and visited for a while today.  He is a charmer and so squishy.  I just can't get enough of him.  It's hard to send him home with Daddy, but I know that Owen needs me so much more right now.  The plan tomorrow morning is to see how he is, but we may do another ECMO trial and see how he tolerates it.  I am thinking Monday is going to be the big day!  Owen is going to rest a ton this weekend and we are limiting visitors.  His transplant buddy, Chase, is a few rooms down getting his monthly IVIG and has his Wii U in his room.  They told us how they brought it from home and hooked it up.. why did I not think of that??  So tomorrow morning daddy will bring his video games and Wii U, so he is so thrilled!!  So relaxing weekend, the entire team will be here on Monday (including Zangwill) and we will be on day 10 of ECMO.  I just have a great feeling about it!  Prayers never cease.

Plan A, B, and C

It has been a long, LONG day. We started his ECMO trial at 8am. About 15 minutes after the cannulas were clamped Owen told me he was feeling really crummy and nauseated.  The echo looked a tiny bit improved, but he was clearly not ready for decannulation today.  Our team here and the team at Stanford collaborated and we had a long phone conference.  All the information gathered in that conference was enough to make me want to vomit.   I am still processing everything, but hopefully by typing it out before bed, it will help me rest tonight.

Plan A.... Owen can successfully wean off mechanical support (ECMO) and can be managed with IV medications to remain stable.  This will give him time to rehab his heart, as much as it can.

Plan B... Owen cannot come off ECMO and we will need to consider re- transplant.  

Plan C.. Owen doesn't get any heart offers and the ECMO circuit can no longer sustain him.  In this case we can place a LVAD (Left Ventricular Assist Device) to buy him more time.

There are MANY risks that come with being on ECMO.  Clotting and excessive bleeding are the two major risks and those risks increase when on for more than 10 days.  He has been on ECMO for 7 days now.   I think it's so surreal because he is totally acting normal while on ECMO.  He is up, doing PT, eating and playing.  I almost feel we are living a nightmare. 

The entire team felt like we should absolutely be planning for Plan A to be successful.  In the meantime, we need to consider plan B an option and not waste any time.  So with that said.. Owen is officially listed for transplant 1A status.  If a perfect heart became available and we cannot get him off ECMO.. we would have to consider that.  Stay with me here.. I am feeling nauseated myself.  I spent the entire afternoon doing transplant evaluations and we had him listed this evening.  If Plan A works out, we can always deactivate him on the transplant list.  Owen prefers plan C because he really wants a mechanical heart like Ironman.

Everyone keeps asking me how I am doing or how I am so positive.  I realize there is absolutely nothing we could have done differently to prevent this horrific week from happening.  I am diligent, OCD really, about monitoring his care.  There was no way to see this coming.  We have been 110% involved with his care this hospital stay, collaborating with Stanford, and making the best decisions along the way.  We have zero control in the outcome moving forward.  We can only give him every single option possible and let God take over from there.  We have complete faith that everything will work out the way it was intended.  God's timing in every event this past week has been perfectly timed.  Perhaps it's me just trying to make a horrific situation a positive one.  Continue to pray and we know that things will work out. 

We aren't sure if he'll come off ECMO.  We aren't sure if he will get a new heart or even need one.  Even if he weans off ECMO support, he may not be able to wean from IV heart meds.  Or his heart may make a full recovery!  If only we had a crystal ball.  We put our faith and trust in our Heavenly Father at this point.  We will continue to be completely diligent and active in every aspect of his care.

Every single nurse, doctor, therapist and visitor has been completely blown away by our Mr Owen.  He is charming, silly and making some big bucks with his piggy bank. ;)  His courage and strength are inspiring to us all.  Keep it up buddy!!!

While on our conference call, Gma Monica watched Logan bedside and Owen got up again to do some PT! 

Owen likes to say he's a lean mean fighting machine.  I just call him skeletor.  I spoke with the nutritionist today in detail and we will ditch the corn syrup loaded formula tomorrow and start him back on his blended diet.  Carson went home with Logan to buy out Costco of all their avocados, salmon, oils, nuts, kale.. you name it!  This boy is going to have the best diet and I am hoping by optimizing his nutrition.. it will only help him for the better! 

 

I am beyond exhausted. It has been such a draining day.  I know so many people were waiting for an update but I just couldn't process things.  My head was spinning, I felt nauseated and just needed to be numb to it for a while. Tomorrow is a new day! 

Physical Therapy on ECMO

Another eventful day in the CVICU. Owen finally got the chicken nuggets he has been asking for!!  He also had some pretzels, a little bit of cheese pizza and three kernals of corn.  Baby steps.

Owen's ECMO nurse today is the clinical supervisor and she wanted to get Owen up and moving!  Yes.. on ECMO.  It is pretty unheard of but he did it!!  PT came in at 2:30 and it took 6 nurses to sit him up carefully as to not bump those cannulas to his heart.  He did some PT, got his bedding changed, and we wiped down his entire body with the sanitary wipes we use before going to the OR.   He felt like a million bucks.  After the nurses got their PT by holding up all the cannulas and wires, Owen settled in for a nap.  But seriously... Physical Therapy and up in bed on ECMO is a pretty superhuman feat!  He required zero Ativan today, hasn't had a dose of Morphine, and is on minimal Fentynal drip.  This boy has a high tolerance for pain!  Then to sit in bed in the same position and not move unless we help him is so incredible.  I'm telling you.. everyone is amazed at how he is tolerating this. 

On another note... look who ditched his oxygen!!  I took off his cannula so I could change the tape to the tendergrips he used to use.  His sats never dipped back down so we just left it off.  He had lots of visitors again today.  Uncle Rusty and Connor bought him a bunch of comic books.. so cool!

His Deadpool piggy bank is sure the talk of his room and he would be the best fundraiser in the world.  The boy is collecting money like crazy from all the staff at the hospital.  He doesn't care if it's pennies or dollars.. he just gets thrilled when they put money in there!  It's been really fun for him!

Daddy is sleeping at the hospital tonight because Logi has been keeping him up at night.  You know it's bad when you choose to sleep at the hospital to actually GET a good night's sleep.  I'm actually excited to sleep in my own bed for the first time in 7 days! 

Prayers for ECMO trial in the morning!!  I'll be there bright and early!!

Extubation

I was going to update yesterday but I didn't sit down from 7am til 11pm. It was a busy day!  Most importantly... Owen was Extubated successfully!  He has done great and is much more comfortable.  His body is requiring 1-2 liters of oxygen, but we all know how he likes his O2.  The nurses searched high and low and finally found a stash of Tendergrips so we will switch the tape to those and make his cheeks feel better. 

I left for a while yesterday to spend some time outside these hospital walls and Daddy spent a lot of time with him.  It felt good to do normal household chores and snuggle Logi.  Then I was back on duty last night.  He had a ton of visitors in and out and we got his room all decorated Superhero style. 

He is starving and told me to "fight for my food" at rounds. ;) We just increased his gtube feeds and he's allowed to have some food orally.  He had some chocolate ice cream this morning which must have felt amazing on his throat and dry mouth! 

Kam found this Deadpool (DC Villan) Piggy Bank in the hospital gift shop.  I think it's totally creepy but apparently it's VERY cool!  He absolutely loves it!  It all started when one nurse put her spare change in him.  Then it escalated into him asking everyone to put money in.  Child Life made this fun sign for him yesterday and he let everyone know at rounds that if they don't have change.. he also accept dollar bills and credit cards.

I slept bedside, but his nurses said he didn't sleep much but mostly shopped on Amazon all night with his ipad.  Guess that piggy bank money will come in handy.   It's been stuffed with some dollars so we may have to empty it soon.  Just a fun little something to keep his mind focused on things other than the fact that he is still being supported by a mechanical heart/lung machine.

He has been the best patient ever!  To be extubated, eating, and totally alert on ECMO is just amazing.  The plan today is to start Cpap breathing treatments which just helps his lungs to work a little harder.. so far he really likes them and we have a great RT today.  He is getting an echo now and that will help them determine a plan.  Decannulation in the morning is tentative as of now.  We will allow him to eat orally and protect his airway so he doesn't risk aspiration.  He is also getting gtube feeds and we will increase that rate today as he tolerates to maximum his caloric needs. His chest xray showed some fluid in his R. Lung so we are starting him back on diuretics to help his body rid of that.

Today will be mostly a resting day...but I need to keep him up as much as possible so he will sleep for Daddy tonight.  I am going to go home and sleep in my bed with Kam and Logi tonight for the first time in a week.  I'll be back first thing in the AM before we do any ECMO trials.  We are trying to get PT up here to get him moving as much as we can while protecting the cannulas.  We are wanting to move his bed and ECMO circuit around so he can watch the tv as well, but he told us "This is my room and I like it just like it is."  So perhaps we won't be moving his bed after all.  One thing is certain... he verbalizes his feelings and lets us know exactly what he wants and how.  His little voice is still so hoarse and sweet too.  Such a sweetheart!!! 

ECMO Trial

Where do I begin.. there is so much information.  At 7:30am Owen was on the schedule for potential decannulation of the ECMO circuit.  The surgical team sat in the hall as the cardiologist, echo tech, ECMO team, intensivists and surgeon were bedside in his room.  To help explain I took a few photos.  Owen has three cannulas on the ECMO circuit.  The blood is pumped through his venous line that is placed in his carotid artery and the blood returns back to the ECMO circuit through his jugular vein.  He also has an ECMO cannula placed  in his right femoral vein and is placed directly in the left ventricle of his heart which allows decompression of that left vent. 

In order to trial off ECMO, we first placed a clamp on the LV line to allow it to work without machine support.  We did see some improvement, but nothing significant.  The good news is that his hemodynamics (HR, O2 saturations, blood pressures) tolerated it and actually looked really good.  We also ran some blood gasses and they looked great.  After a few trials of that, we unclamped the LV line and clamped the Venous line.   This allowed us to look at the Right Ventricle function and that appeared to be much better.  Again, he tolerated is beautifully and his blood gasses looked good. 

The question now is how to move forward.  Do we remove him off mechanical support and treat heart failure aggressively?  Do we remove him from ECMO but continue to support the left ventricle mechanically with a LVAD (Left Ventrical Assist Device)?  I think we are all agree that he needs a few more days of full mechanical support until we come up with a plan.  We will re-trial then and see if there is even more improvement in his function.

On another note... we can't just look at function when making the decision to remove support.  Owen was in a heart failure for several years as a Hypoplast prior to transplant.  He required oxygen support and 13 heart failure meds but it sustained him for a few years.  So the question is how well he will tolerate being in heart failure.  Will his heart recover fully?  It is all a big question.  We have fully treated him for everything that could possible have caused this acute biopsy negative rejection.  Now we just basically watch and wait.

We are adjusting his IV heart medications (Epi, Milrinone) as well.  It's just going to take some time to find what works.  I had a long chat with the Surgeon and Dr Zangwill (transplant cardio). Realistically we will be treating heart failure and transplant rejection at the same time. 

The plan as of now.  We will continue on mechanical support (ECMO) for the next couple of days.  We currently have all his meds running through the ECMO circuit because his central line occludes so he gets boluses of meds, which is not good.  We may be placing another central line today so we can pull that one.  Either way.. we all agreed it will be in Owen's best interested to Extubate him today.  He will be much more comfortable. The downside is we cannot sedate him as much so keeping him comfortable and pain free with all the ECMO cannulas will be a fine balance.  Also, we cannot move too much because those cannulas are placed very carefully into his heart so he will have to hold still. 

Prayers for everything moving forwards.  We are not 'out of the woods' but we are moving in the right direction.  We are in this for the long haul.  I have asked if this type of onset acute heart failure could happen again and the answer is absolutely.  It is terrifying.  I'll update in a bit.. hopefully with a picture of my boy extubated. :)

Vent Frustrations

This afternoon has been low key. I received a call from Kam at school around 11 and she was having a panic/anxiety attack.  I'm sure the many peers and teachers asking how things are going and replaying the scenario out over and over again took a toll on her.  Bless her heart.  She is such a caring big Sis.  Carson picked her up from school and brought her to the hospital to see her brother.  It was just what the doctor ordered.  She read books to Owen, talked to him and rubbed his head.

Daddy and Logan took a little snooze and I got plenty of snuggle time in too.  It's such a hard balance trying to divide time between all the kids and making sure they are all getting their needs met.  On top of that, we are juggling everyday stuff and trying to take care of ourselves. I think we are figuring it all out and doing a decent job. :)

Owen has had a tough time emotionally today.  The biggest frustration is being wide awake, having a breathing tube down his throat, and pretty much immobile.  He is trying to talk and we are playing 20 questions trying to figure out what he wants.  He gets so frustrated that we cannot hear him and tears start to flow.  He says the tube feels like his teeth are falling out or that it's hard to breathe on his own.  It's heartbreaking!!  We have been using small doses of Ativan to help him rest and relax.  He only had two doses today but it really, really helped. 

We have read tons of books today.  I have his iPad set up with Netflix movies so he can watch those from his bed. We can't play with any toys and he can't play iPad because his hands are covered in IVs.  I know on top of everything he feels crummy due to the steroids, fentanyl, dex, milrinone, epi, heparin... and he is also getting his transplant meds on top of it.  I can't even begin to imagine what he is feeling.  He is tougher than I could ever be and is such a trooper!

We just had evening rounds and everyone keeps mentioning decannulation for tomorrow.  I am completely skeptical, but they have pushed back the surgeon's schedule to accommodate Owen in the AM.  Keep praying.  Tomorrow could be a HUGE day for him.  It could also just be a trial and error.  We are off to bed soon.  He has two nurses bedside all to himself so it's easy to stay up late having conversations.  :)