Biopsy -- Recovery

Owen is out of the cath lab and his pressures look good.  We won't have results of the biopsy until tomorrow AM in cardio clinic.  All his sutures and staples were removed and rebandaged (since Owen is a scratcher). 

We went to recovery for a couple hours and now we are settled into the short stay unit.  Owen will start his Cytogam first and then follow up with his IVIG. It's going to be a good 18-20 hours before we are outta here. 

We just got a roommate and we are all hoping they split us up tonight so we can get a good night sleep tonight. 

Thanks for all the prayers.  Today has gone smoothly.

Biopsy #2

Owen is currently in the cath lab. It was an early morning (and a busy one) trying to gather all his medical "stuff". We had to pack our bags to stay the night as well. Owen was happy until we started messing with him this morning.  He's more anxious about getting those staples out of his chest, than he is the actual biopsy.  At least he'll be under anesthesia and won't remember any of it.

He was less than thrilled to get his wipe down bath with the surgical wipes.. I don't blame him. :(

A little Versed always does the trick and he was insistent on me joining him in the cath lab.  So I got my fun little hazmat suit on.

It's always so fun that they make us dress up before we make the mile long walk to the cath lab.  Nothing like a parade of me in my hazmat suit.  The things we do for our kids. Right? 

Once we got to the cath lab, Owen was also very insistent that I be the one that put him to sleep, so I stood at the head of his bed and held the anesthesia mask on his face while singing to him.  I am adding anesthesiologist to my laundry list of medical degrees that I have earned.  Owen drifted off to dreamland and I had to exit.  Then I tore off all my scrubs, mask, gloves and hat and exited like nothing happened. 

Please pray for a great biopsy and no rejection. 

Afternoon Walk

Today was a lazy day for us. I feel like I got a lot done, but at the same time, we did a lot of relaxing.  Owen woke up a little tired and was super sore.. headache, achy legs, ect.  I called to cancel his OT session that we had scheduled out from last month. I got his billion meds into him at 8:30, as well as some Tylenol, and he went back to sleep until 11. I got a ton of work done, phone calls made and ready for the day.

As soon as I had my lively boy back, we headed outdoors for a long walk. The weather is wonderful at 70 some degrees and sunny, so we just soak it all in.  We walked around the mall and wandered around some parks. 

While at the mall, I ran into the McDonalds and grabbed Owen a minion toy.  If you show the RMH lanyard at our malls fancy McD's, they will give you a free happy meal, so I just tell them I want a happy meal, but hold the food since we don't eat it.  :)  Owen was thrilled.  I love that his stroller has such a huge tent hood so he is in a little cocoon in there and he wears his mask if we are anywhere public. 

Check out those little steroid cheeks in the making.. he's starting to get the 'moonface'... adorable!!  Unless you are a teenager or adult, probably not so fun then.

It was the highlight of his day and we made the trek back to the RMH.  Are you bored of our daily adventure yet.  I'm half asleep.  We settled in to kill some brain cells and watch Nickelodeon.  I forgot how horrible some of the shows are since we don't have cable at home.. yikes. 

I was so bored that I went ahead and caught up on all the missed Bachelorette episodes.  Not my favorite season, but it gave me something to do.  That an giving Owen meds, tube feeds and keeping him all loaded up on snacks.  The steroids are increasing his appetite a bit, a little perk to the icky Prednisone. 

Tomorrow morning we have a 7am check in for Owen's 2nd biopsy in the cath lab.  They'll take a piece of his heart (R Vent) and "do a science experiment on it" (per Owen).  Then we'll head to the Short Stay unit afterwards for a long day of infusion treatments, IVIG and Cytogam.  Many prayers for a smooth biopsy please and we want another zero rejection. 

I need to finish blending up his food, drawing all his meds for the next two days and labeling everything.  Goodnight.

Fragile

Today was not one of our best.  Nothing like starting your morning with an alarm clock at 6am so that you can get ready to go to the hospital for lab draws.  Owen was anxious all morning and about had a panic attack in the hallway outside of the lab.  Poor guy.  The lab techs were great and got all the blood they needed in one poke.  Owen calmed down when he realized it was nothing more than a quick poke and we were on our way.  There is still nothing tougher than snuggling your boy on your lap and telling him "yes buddy.. this does indeed stink.  It's not fair.  But we gotta do it!"

A sticker and a band aid seemed to be a cure all and he was happy as punch by the time the valet brought up out car. 

Owen took a mid morning nap and then we woke up and headed outside for another picnic in the grass.  We go outside to escape the germs of the common areas at the RMH, but all the kids flock to Owen even when we're outside.  We had several kiddos join us for our picnic, but they were nice enough to keep their distance.  Owen had some good laughs with the kids, so it was a fun afternoon.

There were rough spots in our day as well.. like Owen not walking at all because his legs are causing him so much pain.  I gave him a couple leg massages and that seemed to help, and by tonight, he had walked a little bit.  He needs some intensive therapy and rehab, but it will take time.  Tomorrow he has OT to work on some core strength. 

I got a call from cardio and Owen's Cyclosporine levels are really low.  The target levels are 300-350 and when we were discharged on Friday we were trending up at around 258.  Today they were down to 128... yikes.  The target levels help him to fight rejection, so having them low is not good.  We are increasing his dose starting tonight. 

Owen's 2nd biopsy is scheduled for Wednesday morning, followed by IVIG and Cytogam infusions.  It will be a long day.

When Owen was 1-3 months, he was an interstage single ventricle.  He was discharged from his first open heart surgery and had a 5mm shunt delivering all the blood flow to his body.  He was fragile and we just had to make it to the next surgery at 3 months! I had to weigh him, check his oxygen sats and HR, then email his NP daily with the data and tell her if anything was 'off'.  It was an intense monitoring program to help decrease the mortality rate in interstage babies.  I kept him in quarantine and healthy those three months.  It was intense. 

I feel like we are back to that fragile state, only five years later.  I am taking twice daily blood pressure readings, temp checks and watching his weight carefully.  If his temperature increases, if his weight suddenly increases/decreases, if he has lowered activity... pretty much any little thing can be a sign of rejection.  I feel like I am always on edge.  I am always sanitizing, washing hands and making sure he is comfortable.  I am sure he's annoyed with my constant.. "are you okay?  How are you feeling buddy?" 

I know it gets better with time, but these first few months post transplant are the most critical and I will be on edge for a while.  Not only that, but he still has the lack of energy he did when he was in heart failure.  He prefers to stay in bed and play Wii, won't walk much, and I keep reminding myself he's only 13 days post op.  He is healing.  I am a little on edge for the biopsy this week and am praying for another ZERO rejection and for his labs to level out at therapeutic levels.

It's 8:00 and Owen is already sound asleep.  I think I might just join him. :)

Sunday Firetrucks and More

We are missing Daddy and Kam, but managed to get into a little routine today.   I got up early and spent about 30 minutes blending Owen's gtube feeds for the day, as well as drawing up all his syringes of meds for the day (about 26 total).  Then we had to get to Target as soon as they opened so we could avoid the crowds.  Owen wore a mask, we had his full tent cover on the stroller and we rushed in and outta there.  I think we avoided all the germs we could, but I really needed a phone charger because Kam accidentally took mine home. 

We came back to the RMH and relaxed while playing Wii.  Owen's legs have been really sore and weak today so he hasn't walked much.  We did pack up a little lunch and walk to our backyard at the RMH and set up a little picnic.  The weather was perfect and it was nice to just relax outside for a while.   

Owen was full of good ideas, which included a 2 hour afternoon nap.  Bliss.  Early this evening, we headed downstairs for the balloon animal guy to make Owen a heart balloon.  Then we headed outside to watch the Firefighters grill up our dinner on their giant fire truck grill.  It smelled phenomenal.

Owen got a personal tour of the firetruck and learned all about gaskets, hoses and their equipment.  Very cool.

We even let him sit inside the firetruck and check out the captains seat.  He wore his mask the whole time, I just took it off for pictures.. I am going to be OCD for a while.

Owen's friend Trey is here from AZ because he has an ASD closure in the cath lab tomorrow at LPCH.  It also happens to be his 5th birthday this week, so they joined us for the PA Fire Dept monthly birthday dinner and party. 

Trey and his family brought Owen this awesome Dbacks baseball hat... which Owen loves.  It was great to see the Mayer family.. I'm so glad you guys came for a visit!

Dinner was yummy and now we are back in our room resting up for an early morning at the hospital. Owen has labs due... which means pokes. :(   His immunosuppression meds need a little adjusting to get his levels where they want them to be, so that means we have a few extra lab draws.

It has been a great Sunday and we just finished the day with a face time goodnight call to Daddy and Sis.

Settling into our RMH Apartment

We are settling into our new digs at the RMH.  Owen's first morning was great.  He woke up, climbed out of bed and said "I feel so good without my oxygen and I can breath the air." Then he walked to the elevator and down to brunch.  He is definitely feeling better than his body can keep up with since he's still healing post op.  Nights are the hardest because Owen has night sweats, night scares and he just likes to be really close to his mama.  This too shall pass and I am enjoying the attention from my boy.

 

There is an entire wing with 8 transplant suites made available to heart transplant patients.  So we still enter the RMH at the same location and have full access to the kitchen and laundry rooms.  This is our little apartment inside the RMH.  Nevermind the lack of organization.. we've been here barely 24 hours.  

This is our kitchen.  I made spaghetti, meatballs and garlic bread tonight and we all survived.  Then we had to take Daddy and Kam to the airport and send them home... so sad.  Still so grateful that they were here for us this week and they will be back in a month! 

This is our pantry/closet/storage.   It's a catch all right now, so it's a mess.

This is the adorable Mr Owen in our family room watching Ironman.  It's an Ironman marathon followed by XMen.. it's going to be a fun night!

This is our bedroom.  I'm still washing sheets and remaking beds.  I will also take that beautiful photo down tomorrow and get Owen's superhero wall put back up for him.

This is Owen's little TV corner with his Netflix and Wii.  He loves to lay in bed a right now since he's still recovering and just play Wii.

The tour wouldn't be complete without showing you our bathroom.  I have no idea what to do with lack of storage, so I bought a big Tupperware storage container to put our stuff in. 

That's it.  This will be our home away from home for, at least, the next 3 months.  We are missing our two favorite people and it's only been a couple hours since we dropped them at the airport.  They have a busy week at dance, work, and getting ready for back to school.

Owen and I have a down day tomorrow.. a picnic in the grass sounds wonderful.

Discharged

It's official... Owen was discharged today!! It was a busy, busy morning and we are all totally exhausted.  It started with a swap with Daddy at 7:30am.  I helped with the morning lab draw and then had to rush to the RMH to get our room packed up and cleaned.  It took me and Kam two hours to pack and bring everything down to the manager's office to store it until our new room was ready.

We headed back to the hospital after grabbing chocolate croissants at a local bakery for breakfast. 

While we were gone... Daddy stood in rounds, took Owen for a walk around the entire unit with his PT and helped him eat his breakfast.  I had some insurance kinks to work out, picked up Owen's prescriptions at the hospital pharmacy and Daddy ran to the Walgreens in the cancer center to buy a blood pressure machine. 

Transplant and pharmacy came by to double check all of Owen's meds and tested me on my syringe skills to ensure I knew how to draw meds properly.  I passed. :)

I called to have all of Owen's oxygen tanks and equipment picked up and that felt fantastic!! No more oxygen ever!! 

We had to do a bunch of discharge paperwork and had the nurses provide us with tons of bandages for Owen's many wounds.  He still has a billion staples down his chest and stitches in his belly (chest tube sites), so I have to be cautious.  He'll get everything removed on Wednesday when he goes in for his second biopsy.

We were out the door around 3pm and then had another two hours of unpacking at the RMH.  Thankfully, it was McDonalds night at the RMH so dinner was taken care of.  I did have to run back to the hospital for one more med. 

It's safe to say that we are all tired, including Owen.  I drew up all his night meds and took his blood pressure tonight without a hitch.. success.  Owen is sleeping in his own bed at the RMH and has already had a few night sweats and little scares in his dreams.  It will take time to be back to himself, but we are moving in the right direction. 

Yay for no hospital tonight, no vitals, no pokes.

Post Op Day 8 ... Details of the Day

If you read my last post, you know the results of Owen's biopsy were ZERO!! That means he has no rejection of his new heart at this time. His pressures are also great and he's only on one blood pressure med, which is really great.  This morning the nurse brought in his meds so I could review them.  I had my home pharmacy training and I know what each med is for and their side effects.  He will slowly wean off some of the meds, but this is only one more than we were on before transplant... I'll take it!!  For you medical peeps out there and so I can look back on this one day and remember, these are the meds we are going home on.

Cyclosporine (anti rejection)
CellCept (anti rejection)
Prednisolone (steroid - anti rejection)
Lasix (diuretic)
Cardizem (blood pressure med)
Omeprazole (acid reducer)
Clotrimazole (Owen calls this his mint.. sucks on it to prevent thrush in his mouth)
Septra (treats bacterial infections)
Valcyte (treats viral infections)
 Lipitor (helps to prevent Coronary Artery Disease)

At rounds they decided to pull all his tubes and lines today and prep for discharge tomorrow!!  YAY!  Owen had his chest xray and EKG to ensure the lines were ready to be pulled.  After that traumatic and painful experience... he earned a car ride! The chest tubes are long and deep and look horrific when they pull them.  Owen loved his ride, but was tired after one ride around the 3rd floor.  I still can't get over how well he does with his mask.  He loves his "storm trooper mask".

Settled back in his room, Owen was ready to get his PICC line removed.  Kam and I ran to do a little laundry and iron out some insurance/pharmacy issues before tomorrow.  I think we have things figured out to have all his meds ready by the time we are discharged.  The only thing that may keep us here longer are his med levels.  Owen will have labs drawn in the AM and we will make sure everything is working at therapeutic levels. 

Our room at the RMH won't be ready until 3pm, but we have to check out of our room by 10am so they can prep for another family.  So I will have a busy morning of packing, moving, and cleaning.  Then back to the hospital to prep this boy to come "home". 

I am so grateful that C and Kam are here.. I don't know what I'd do without them.  We are all working together to make things flow.  I am so happy that Owen and his new heart are happy together. 

Post Op Day 8... Biopsy Results

It has been another busy day on 3West.  Owen is doing phenomenal and continues to push ahead.  First I'll start with the best news ever... ZERO REJECTION!!!  

Do you want more good news??

The chest tubes and pacer wires were removed this afternoon too!!

I finished up all my transplant teaching, medicine training, and we are ready to get out of here. 

Owen will have his labs checked again tomorrow morning.  There is always the chance that they are not within range and we have some tweaking of the meds to do.

We should have a transplant suite at the RMH opening up tomorrow ( I hope) and so we are on our way out of the hospital.

The plan is to stay at least 3 months at the RMH because he has a billion biopsy and infusions coming up. 

Thank you for all your prayers, packages, support and love.  We appreciate it! 

I'll post more in a bit... Owen wants to go on a ride in the toy cars.

Post Op Day 7 ... Biopsy Day

Today has been a whirlwind.  Owen was up most of the night last night with insomnia, leg pains and night sweats.  It was a long night!  He watched three movies and just could not sleep.  I can't poinpoint which medication is causing which side effects yet.  He also has had a little roid rage here and there which is super fun (sarcasm).  I have been really patient and just let him express how he is feeling because I can only imagine how many changes his body is undergoing. 

Owen had his first biopsy scheduled in the cath lab at around 12:30pm.  He was NPO after 6am and didn't seem to mind.  He was happy and had a good morning.  Daddy, Kam and I went down to the cafeteria to have breakfast and were only gone about 15 minutes.  I let the nurse know that Owen was happy in his recliner with his movie and iPad and not to really bug him too much until we get back.  Well, C came upstairs and found the RT in our room with a mask on Owen and he was hysterical.  The nurse wasn't in the room because "she wasn't allowed due to the med being used."  I handled things well, but made sure that we are all on the same page that no one is to be in Owen's room alone without a parent or his nurse present.. especially since I basically live in this room.  Owen has had anxiety and has been totally nervous around every nurse/doc since and is afraid if I leave his side.  Who knows what went on in those 15 minutes, but I am certain that Owen was scared.

An hour later we were giving him a bath and heading down to preop for his first biopsy.  Anesthesia had given him his Versed since he was on edge and we wheeled him down to the cath lab.  About 20 feet from the doors, the anesthesiologist got a call and stopped walking.  We had to head back to pre op because there was an emergency in the other cath lab and it took all docs to attend to it.  I have never been so happy to wait a little longer knowing that they were attending to someone else's child.  Owen fell asleep as soon as we got back.  Daddy sat with Owen, while Kam and I ran to the RMH so I could shower.  It had been a long morning. 

Owen's biopsy results won't be in until tomorrow, but they did say his pressures are fantastic for being one week out of transplant!  The SVC narrowing they worried about, turned out to be no big deal and his pressures are all as they should be.  We pulled his PICC line back about 4cm because there was stenosis of the artery causing a blockage, so I hope it works just a few more days.  The only thing keeping us here is those chest tubes which continue to drain significantly less each day!  That and zero rejection and we'll be out the door!! :)

I still can't believe that just one week ago, this was my boy.

Here is he today!  It's remarkable!!

Kam and Daddy came back tonight after dinner.  It has been a good day and tomorrow will be better, pending some great biopsy results.  So far, I am pretty certain that Owen and his donor heart were meant to be!! 

I'm hoping the insomnia was a one time deal because it was brutal.  So far, Owen hasn't been able to fall asleep and it's almost 10pm..  He hasn't slept in a long time.  I haven't slept in a long time.  I had a good cry this afternoon because sometimes, you just reach a breaking point.  It has been a blessed week, but has not come with it's share of emotions and has been physically demanding.  Thank you for continued prayers.

Post Op Day 6 ... Out of CVICU!

We have officially moved out of the CVICU! I got here early this AM when Owen was still sleeping. He had breakfast, followed by a little therapy session. He did great getting out of bed. We didn't have him walk yet today, he's still too weak.  Instead we focused on just throwing and standing from the stool.   

It was soon afterwards that they moved us out of the CVICU and up to 3West (stepdown).  Owen has a private room and it's much more comfy up here.  Nurses only bug you once every 4 hours for vitals.  I am starting all my transplant learning today, which will come easily.  Owen is actually on LESS meds now than he was pre transplant.  

Before we moved upstairs, Owen had his ART line removed.  I was not happy about it, but am choosing to pick my battles.  Look at this sweet boy... I can't get over how great he's doing.

Tomorrow, Owen will get that leaky PICC line changed out. Yuck.  I don't like the infection risk each time we have to change the bandages.  It will be nice to get rid of it. 

 

Owen's labs are all trending in the right direction and everything is looking great!  The only thing of any concern is his chest tubes keep draining.  Today he has put out significantly less output, so he may get those pulled in the cath lab, although I am not holding my breath. 

 

This afternoon a clown friend from the RMH came by and gave Owen a private magic show, which he loved!  Then the RMH cart came around with drinks and toys for all!  Owen continues to be as sweet as punch and making sure to tell all the nurses how pretty they are. 

 

Auntie Janesa came by and brought us lunch.  Then took Kam out for a pedicure and some girl time.  Owen loves the books she brought him.. thanks for coming J!!

 

Tomorrow we are praying for ZERO rejection.  I'll explain more in detail about the biopsy tomorrow.  Tonight, we are having a sleepover on 3West. 

Post Op Day 5 -- NO MORE OXYGEN!!

It was a relaxing day, but we are exhausted.  Owen was up most of the day and busy.  Child Life found him a rolling cart with a TV and Wii system on it, so he was loving that!! He took a short afternoon nap and did a puzzle with Kam. 

This afternoon, we turned Owen's oxygen off and so far so good!  It took a while, but he finally let us remove his cannula.  Look at this incredible pink boy!!  His lips, his cheeks, even his eyebrows! 

A whole heart is doing this boy good and he is so happy!  His silly side is back too.

The chest tubes are causing him some discomfort so we just gave him a 1/4 dose of Morphine to take the edge off.  Then that made him feel nauseous so we gave him some Zofran.  Hoping for a good nurse tonight and a restful nights sleep for all of us.  Tomorrow is another busy day of recovering.

Post Op Day 5

A decent night sleep did us all some good. Owen had a great night.  He slept well and the nurse didn't have to do much fussing with him.  He did get new bandages all over... that was it.  They took him completely off of Milrinone... yay.  He is only getting Lasix, Tylenol and Rabbit Globulin in his PICC line, everything else is oral (gtube). 

Three times daily he is getting his Nystantin swab of his mouth.  It's disgusting.. I tasted it.  We had the pharmacy order up the lozenges instead and we'll see if they are more tolerable.

Owen has been getting out of bed today.  This morning I moved him over to the recliner while I changed his bedding.  He lasted about 15 minutes.

Occupational therapy came by to work on his swallowing of fluids and food for breakfast.  We are just temporarily thickening his liquids until he gets his voice back.. it gets louder every day!  Physical therapy worked with OT to get Owen out of bed.  He did great!  He stepped out of bed, turned his body around (with a lot of support) and we got him in a wheel chair where he can't slouch and lie down.  He stayed for about 30 minutes before getting too sore.

This morning while giving him IV Lasix, he complained that his foot hurt.  Thankfully it was only about 2 minutes after starting the infusion and it was infiltrating his foot.. so we caught it before it caused harm. 

The plan for today is to leave the chest tubes just one more day.  They put out a little clear drainage overnight and today they are almost not even draining.  So tomorrow it is!  He will feel so much better.  The oxygen is only on 1/4 liter, but it's just enough for him. 

Owen had his amphotericin b anti fungal breathing treatment again this morning and did so great.  It's pretty yucky and he says "Man, I hate this stuff!"  He does it anyway and is so great about it.  It's a green bubbly medicine that turns into a green mist with the mask, so I keep joking that he's going to turn into the Green Goblin (like in Spiderman). 

The rest of the day we will relax and recover.  We are ready to move up to the floor when a bed is available.  They have 7 discharges on the floor and Owen was 4th in line to get kicked out of the CVICU. We will see if we move out today or not.  Everyone is impressed with his quick recovery so far.

Owen's PICC line has been a pest.  Leaking all over and not drawing blood.  So we are keeping his ART line in until Wednesday.  He will go in for his first biopsy on Wednesday and they will place a new PICC line then.  We need IV access over the next couple months.

That's all for today thus far.  I'm sure I'll have more to post in a bit.  Daddy just got here, so I am off to take a nap.  A well deserved nap.

Post Op Day 4... Brave Boy

It has been an exhausting day.  Owen has taken little cat naps throughout the day, but this mama is going on fifteen hours in the CVICU.  We got Owen out of bed and in a recliner for about 20 minutes today and I put a playmat on the floor so we moved to that a couple of times.  He has very low core strength and his legs collapsed when I tried to have him bear weight on them.  Baby steps. 

He finally ate a couple bites of chicken and choked on the cranberry juice just a little.  He did great swallowing his water, but we just did tiny sips.  He needs to get his vocal cords healed before he starts chugging down his fluids. 

We did wean his oxygen to 1/2 liter and he did great with 100% sats.  The nurse removed his cannula and his sats dropped to 85 almost instantly.  We got him on 1/4 liter to bring them back up and he is still requiring that puff of air.  Later in the day we weaned him off again and he maintained his sats of about 93-94%. 

Tonight he had a desat episode when we gave his Cyclosporine by mouth and it made him wretch.  He puked everywhere and so we had to turn his oxygen back on to a liter.  He loves his O2 and I think he needs it a few more days.  He has been on O2 since he was a baby, so it's not an issue if we need to use it a bit longer.   We will patiently wait until he is ready.

Tonight he had an Albuterol treatment, followed by his Amphotericin B (anti fungal) treatment.  He was such a rockstar!  It was awful tasting and he fought it a bit at first, but just relaxed and let it be.  This boy has earned a toy for tomorrow.  An early morning IV, followed by getting in and out of bed, painful chest tubes coming out of his chest cavity, breathing treatments and taking his meds orally (even if they did make him puke).  He hasn't complained and just smiles through it all.

 If the day weren't busy enough, we just changed his PICC line dressing, the dressing on his neck from the horrible central line and his "zipper" dressing.  He just asked for his vibrating treatment on the bed and said "Love you, night night."  This boy deserves a good night sleep.  He has the same nurse that has taken care of him the last three nights... so she won't bug him at all and will take good care of him.

Tomorrow will be another busy day!!  I am so proud of this brave boy. 

Post Op Day 4 -- FOOD!!!

Owen had another fantastic night.  I got to the hospital around 6am and he was already bathed, teeth brushes, bandages changed and ready to start his day!  He loves his night nurse and we are happy that she'll be back again tonight.  Another night of sleep for me too. :)

The plan for today is to wean off the Milrinone.  Take him off the oxygen completely (pictures to come).  Start eating like a champ.  Getting his gtube feeds back to full nutrition.  Switch his Prednisone (steroids) and Cellcept (anti rejection med) from iv to gtube.  Then he'll just be getting iv Lasix and he has two more days of ATG (rabbit globulin).  Respiratory will be giving him Amphotericin B, an anti fungal breathing treatment later today, just routine and preventative. 

Owen's first meal post transplant was a success!  Chicken, grapes, ketchup, cranberry juice and water. He is doing great while eating and still struggles a bit with drinking.  We've been taking small sips of water and he does great.. but I always have fear of him aspirating post intubation, so we are taking it slow.

We are going to get Owen out of bed a little.  Maybe a wagon ride, sitting in the chair. He's still too weak to walk and has very weak core muscle strength.  He was a dead weight as I moved in him into the chair last night.  PT and OT will be here tomorrow morning to help work on that a little.  They said he should be moving out of the ICU by tomorrow or Tuesday.  Amazing!!!

Post Op Day 3 ... Success!

Owen wanted to say THANK YOU for all the prayers... he is looking fantastic!   He was a busy boy today.  Lots of sitting up, working his lungs, blowing bubbles and he loves the bed percussion treatments.  His oxygen is on 2 liters and he is sitting at 100% saturations.  We'll slowly wean him down tomorrow.  I can't wait to see those little cheeks tube free for the first time in 5 1/2 years!! 

He has been so brave and tough.  No tears, no fear.  He watched his nurse pull the ivs out of his feet and didn't even flinch.  Then we pulled the central line out of his neck, snipped a lot of stitches and pulled these monsters out of his Jugular vein.  He didn't cry, just closed his eyes and we counted until it was over. 

After that was done, we got him out of bed and sitting in a chair for a bit.  Then he had his echo.  He was so excited to finally get to eat real food tonight, but the doctors decided to give him one more day.  His voice is still raspy from the ventilator and we don't want him to risk aspirating fluids into his lungs, so he needs one more day of rest.  So tomorrow.. he will feast like a king!  

I have been giving him Pedialyte and just recently added some blended food to his gtube.  He is tolerating it great and isn't feeling as hungry since his belly is getting food. 

Everything is positive.  Owen is positive.  I am so inspired and amazed at how well he is handling everything.  Not a single complaint of pain and total cooperation for the nurses and therapists.  Tomorrow we will get him walking and out of bed a little more.  The chest tubes aren't putting out much fluid, but enough that he may need them another day. 

That about wraps up our busy day in the CVICU.  Owen loves his nurse tonight and he is her only patient since he's in isolation.  So I am off to the RMH soon to get a full 8 hours of restful sleep.  Continue to pray for the donor family.. each time I place my hand on Owen's chest and feel his heart beat, I think of the family that gave Owen a second chance.

Post Op Day 3

Owen has had a fantastic morning!! I am just in awe of his strength. I stayed bedside from extubation until about 6am. The nurse changed his dressing on his "zipper" and it looks wonderful. We also removed an iv from his right foot, changed his bedding and gave him a little wipe down bath.

  When I went back to the RMH to sleep, Daddy came to start his shift. Owen was awake most of the morning with Daddy watching movies and blowing bubbles. Kam and I came in around 11am... just in time for doctor rounds. Owen is having a big day.

 We weaned him off of the high flow oxygen and he is back to a regular nasal cannula on 4 liters and weaning. We are removing the iv in his left foot and already weaned him off of the Dopamine. We are switching his Milrinone back to his PICC line and getting rid of the horribly painful central line that runs through his jugular vein in his neck.

 I have started clear liquid in his Gtube and he's tolerating it well. He should be up and eating a regular diet by dinner time!! He had some licks of a popsicle, but I am being cautious of his oral feeds because I want to protect hit airway so he doesn't aspirate.   OT was in here for a little bit working on some therapy. 

His pain is being managed with Tylenol still and we're about to give him just a half dose of Morphine before taking out the central line.  It's stitched into his neck and he has to hold really still while we cut those stitches out.. it's the worst!  How scary to have scissors being snipped at your neck.  I'm sure he will be brave and it will feel better to turn his head.

We continue with the bed vibrating therapy because he loves the percussions and it vibrates him right to sleep every time. 

Look how pink and peaceful he is.  He loves his new heart!! 

Early Morning Extubation!!!

I can't say it enough, but Owen is such a superhero. It's unreal. He hasn't complained about a single thing. Asks for his mouth swabs, tells us he's comfortable, he remains calm and communicates well with his medical team. Last night around 10:30pm he woke up and said "night night mom". I told him I was going to go get some sleep and he smiled and mouthed "ok.. I love you." I asked him if he was okay to stay with his nurse and he said "yes" and waved at her to acknowledge her. Then went to sleep. I ran back to the RMH to get a little shut eye and told the nurse to call for anything.

At 2:30am I got a call that he was awake and asking to get his breathing tube out. I came right away and the respiratory therapist was in shock at how sweet Owen was. He wasn't scared at all. He had a little bubble blowing competition with the RT and he was just watching his movie. The RT said, he is not a 5yr old boy, he is a little man!! He was impressed with his mature communication and disposition. That's my boy! :)

Owen blew some bubbles for me, and has been actively coughing as needed. He just smiled at me and said "night night" and told me his central line in his neck is sore. We gave him his next dose of Tylenol and he's sound asleep. They started him on 10 liters of high flow oxygen, but he's down to six. They will decrease that quickly and get him changed into a regular nasal cannula as he's ready.

The nurse is going to pull an IV or two that we aren't using and we'll change his chest dressing. I'm anxious to see his new "Zipper". The surgeons come around early so we'll see about the chest tube drainage, maybe we can pull one of those as well. Overall.. Owen couldn't be doing better. We are going to have a busy post op day 3!

  I'll stick around until we get through the ouchies (chest tubes, iv pulling, dressing changes) and then doctor rounds. This mama needs sleep so I am putting Daddy in charge after that for a while.  Kam will be a great distraction for Owen today and she will have him moving a little, playing games, ect.   I am hoping by around 7 he can start having some clear liquids and by lunch, he can have his first meal. 

I am still in awe of my Superhero.

Post Op Day 2... Wake Up Sleepy Head

Owen just had a vibrating bed treatment.. he woke up and requested it. Love it! The nurses are all amazed at how calm and sweet he is. We all ask him questions and he just nods yes or no. He sucks on his lemon drop sponges by himself and watches movies. The docs are pushing to extubate soon because they feel he is ready. We just need him to wake up... sleepy head. Still no pain, he just gets his Tylenol every six hours.. amazing boy! Tonight he will also get his 2nd dose of Rabbit Globulin.. which will suppress his white blood cells from attacking his heart. 

Owen's donor family has been on my heart today.. keep them in your prayers. We are so very grateful for this amazing gift!

Post Op Day 2 .. Evening Update

Owen continues to rest today.  We are ready to extubate as soon as he is.  His pupils are still really small and he's been falling in and out of sleep most of the day.  His body is resting and recovering from a wild two days.  He wakes up, uses a little moist lemon sponge to suck on and moisturize his mouth.  Then he communicates with us by pointing and us asking him questions.  He watched Wreck it Ralph and drifted off to sleep a few times. 

Daddy and Kam were out and about for a little bit, then we traded off.  Kam and I took a nap at the RMH and then a little walk.  It's about 5:30 and Owen's PO2 levels are a little lower than we'd like which is showing us his lungs are still needing a little support and his body needs more rest.  We are not rushing things but are ready to extubate anytime he is. 

Daddy and Sis went to eat some dinner and rest at the RMH for a bit.  Owen and I are hanging out with George.

I changed Owen's gtube and got some stickies cleaned off his tummy.  He is looking good. :)

Post Op Day 2

Owen had a pretty calm and relaxed evening post intubation. I left around 2:30am to go back to the RMH and get some sleep. C came back to the hospital at around 6am to be with Mr Owen.   He woke up intermittently and communicated by pointing, mostly wanting a drink of water, which he can't have.  He also wasn't thrilled about having the tube back down his throat, but he is resting comfortably.  He still hadn't needed any sedation or pain meds, aside from Tylenol.

At around 9am, Kam and I woke up and had a long talk.  I wanted to make sure she understood what was going on before we got to the hospital today.  Everything is positive.  Owen's lung is inflating again.  The surgeons are a little concerned that it may be his diaphragm causing some issues since it's so close to the surgical area, but we won't know anything until he's extubated again.

Owen did get his left chest tube pulled this morning and was given a small half dose of Morphine for that.  He didn't seem to feel it, so that was good. Those tube are long and they are painful. He still has two chest tubes, one puts out about 20ccs every hour or so and the other is minimal.  Hopefully we will ditch one or both of those tonight or tomorrow.  We took out his catheter and so he should be feeling more comfortable.  He still has two ivs in his feet, the arterial line in his wrist, the PICC line in his arm, the central line in his neck and pacer wires in his belly.  

I made it to the hospital in time for rounds today with Kam.  The plan today is to let him rest.  Then start to wake up!!  We want to get him extubate again as soon as he is ready, but we need him to be fully awake and feisty.  We are giving him Tylenol around the clock for pain and we have Morphine ready if needed, but we are trying to avoid giving him narcotics if necessary.  So far since surgery he has only had two half doses of Morphine for pain (one of those was today for chest tube removal).  We also have Versed ordered in case he absolutely needs it. 

Pre/post extubation we will be doing chest xrays and we will watch his diaphragm and lungs closely.  Usually in older children, like Owen, the diaphragm will sort itself out and no surgery will be necessary to fix it.  The nurse is suctioning him often to keep any gunk out of his chest.  His blood gases are looking better, but we are still watching his P02 carefully as it's been lower than ideal. 

He is pretty out of it right now so I am catching up on phone calls/updates/ect.  C took Kam to do something fun for a few hours.  I would like to keep her out of the hospital as much as possible today, just for her sanity.   Owen has been waking up and reading books with him a little bit, then drifts back off to sleep.  He says no pain, he's comfy, he seems content even with the tube.  Such an amazing boy!

Thank you for all the prayers and love.  I will update more in a bit.

A Scary Night... Re-Intubated

Tonight was scary.  Please keep Owen in your prayers.

Owen has been very groggy today.  His blood gas levels were great and he was ready to extubate at around 4pm.  He was tired most of the day and had heavy eyes.  We tried to get him moving a little and coughing up the secretions in his chest, but he was too out of it.  He communicated with us all day with his raspy post ventilator voice, it was heartbreaking and very sweet.  He sucked on a sponge to hydrate his little mouth and we read a few books together.  Respiratory therapists had to suction him a few times and help him get rid of the secretions that he was unable to cough up. 

As we were getting ready to head back to the RMH to get some much needed sleep, Owen's sats dropped a little and his blood gas came back with lower PO2.  PO2 is the level they look at that measures the levels of oxygen in his blood.   The RT did a suction before we left and things were looking better and he was resting comfortably. 

We got back to the RMH and I was asleep before my head hit the pillow.  At 10:30, Owen's nurse called to tell me his blood gases looked perfect and it was just what I needed to hear to rest my head and get a decent night sleep.

The phone rang at 11:15pm and it was the charge nurse.. she said that Owen's oxygen was dropping into the low 80s and they were reintubating him stat.  I rushed back to the CVICU to find a bunch of doctors surrounding my boy and I broke down in tears.  Doctors came out one by one to update me, but I just imagined Mr Owen being so scared and I wasn't there.  I am always there!! 

They let me in right away and he was sedated and had a little paralytic.  His PO2 levels were lower than before and the chest xray had come back with the right lung looking hazy.  The surgeon came in and checked his chest tubes and did an ultrasound of the lung and said it's not fluid, but a collapsed right lung.  This is new for us, but not uncommon.

Owen's lungs are used to a totally different circulation.  With his HLHS heart, he had the right ventricle of his heart pumping blood to his body, while the lungs received less oxygenated blood.  This is why his 70% oxygen saturations were acceptable with his old heart.  Now his body is adjusting to a new heart and his lungs are getting an adequate amount of blood flow.

When the lungs fill up with blood it prevents the air from getting in and expanding the lung, causing it to collapse like a deflated balloon.  So Owen's lungs are getting more blood flow and his right lung just need to reinflate with air.  Does that make sense?  It's almost 2am and I'm running on 4 hours of sleep in the last 48 hours.. bear with me. 

The solution....  Owen is back on the ventilator.  We have him laying on his left side so that gravity will drain any blood/secretions out of the right lung.  The RT is suctioning him often to get the gunk out so that the air can get into his lung and get it inflated again.  We started Albuterol and Mucomyst to help expand the lungs and break up secretions as well.  The vent settings are forcing air into his lung and allowing his body the rest it needs. 

The good news is that his left lung looks wonderful, he has no fluid buildup around his heart or lungs and his chest tube output (drainage) isn't significant.  His heart is beautiful and working hard.  It's just one setback.  I just wish it didn't happen as soon as I left the hospital.  Now I am a hot mess. 

We decided to keep him off the Fentanyl drip for now and we will just give him Morphin or Versed as needed to keep him comfortable with the breathing tube and lung treatments.  Owen hasn't been in much pain since he left the OR and hasn't had any morphine since last night (the night he came out of the OR).  We have been managing his pain with only Tylenol.  All day long I asked him.. "are you sure you aren't in pain?  Do you feel okay?  Any ouchies?" and he said he was fine and was really comfortable.  Tylenol.  A day after having major open heart surgery and his pain med of choice is Tylenol.  INCREDIBLE!!!  He still doesn't have any morphine in his system and he looks peaceful and pain free. 

Owen is resting peacefully.  It's been almost 3 hours since intubation and he looks great.  All his blood gasses are coming back good, his sats are back up to 100%, and his vent settings are being slowly decreased. 

Please keep Owen in your prayers.  I am still deciding if I should go get a few hours of rest.  I need to take care of me so I can be here for him.  Until tomorrow....

Extubated

Owen is Extubated!  At around 4:30, we tried to wake him up and pulled the tube.  He was on regular flow cannula at 4 liters.  We brushed his teeth and cleaned his mouth for him.

Then he showed us his best sleepy smile.  This has been the most awake we've seen him.

Then he was back to sleep.  We tried to sit him up and blow bubbles.  He just slept.  We tried to get him to cough to help wake up his lungs and he gave us two big coughs before going back to sleep.  He has been so sweet and brave.  He can hardly keep his eyes open.  He is less than 24 hours out of surgery, and he had a very long operation and spent many hours on bypass.  Baby steps.  I'm still amazed that he is doing so well!

Since he's sound asleep and only wakes up every once in a while to ask for something, we have his bed on pulsing therapies to do a little work for him.  He loves it so much!! 
Owen was too sleepy to keep his sats up and his sats on his blood gasses came back a little low, so we switched him from 4 liters of regular flow oxygen to 10 liters of high flow.  It was just what he needed.  He is resting soundly, his blood gasses are perfect and everything else looks good. 

He is currently finished another vibrating session and he's looking as good as can be expected.  Prayers are being answered.