Warm Days, Cool Boy

My facebook feed has been blowing up with how crazy HOT the weather has been, especially at home in AZ. I think they are getting close to 120 at home this weekend and I am feeling grateful we are in Palo Alto. The weather today was 90 degrees with a slight breeze.. perfection!  Stay hydrated!!

Owen and I headed to Costco for a few bath towels since we only have two. Then we had to get a few more things at Target before we are on foot. Our rental car goes back tomorrow and we are going to take our first cab ride ever back to the RMH.   I'm excited to explore Palo Alto for a couple days on foot and explore some parks.  The RMH has bikes we can rent with the pull behind trailers for Mr Owen and his O2.. we'll try those out.. if I can remember how to ride a bike. :)

Tonight we walked over to the mall and walked around a few times.  Owen loves all the gardens, fountains and these tin statues.  He loves finding these statues around.

My sweet boy is getting so big.  He walked around on his own for about five minutes before getting back in the stroller, he gets exhausted so easily.  He's been on the transplant list for 302 days total and 15 days as a status 1A (top of the list).  I feel like it's going to happen soon.. that may just be wishful thinking.. but I feel it.  We are all ready!!

Missing Sis

The last two days have been relaxing enough.  Yesterday we were given tickets to a private screening of Monster's University in Redwood City.  The theatre was for donors of LPCH and they donated extra tickets to the RMH families.  It was a great date with Mr Owen and wonderful to see all the amazing things happening with the new hospital. 

This morning I changed out Owen's Milrinone again and had to change all the caps on his PICC line.  I am getting the hang of everything and it's not so scary the second time around.  We met up with a new friend at the mall for lunch and we had a great time.  This afternoon I have a lazy boy but we'll get out of here this evening for a little walk and hit up Trader Joes for some snacks and produce. 

We have been lucky enough to Skype with Kam almost everyday while we have been gone.  She is having such a fun time with her cousins at the lake this week. We miss this silly girl!

Last week Kam went to Disneyland with Gigi, Gpa and Gma.  They had so much fun at the beach and getting their Disney on. 

I saw this gem on her instagram account.. LOVE!!!

This was a picture she drew Mr Owen before we left.  This is totally Owen when he gets his toy swords out and wants to fight. 

Only six days until Daddy and Kam will be here.. we are totally counting down.  We are settling into a routine in Palo Alto.  We can totally do this.  The past two weeks I know of at least five of our heart friends that have been transplanted.. it gives me goosebumps every time, and my heart aches for the donor family at the same time.  Owen's heart offer will come soon.. or "In 100 days" which is always Owen's response when you ask him. ;)

Generosity

Today was a great day.  We are finally getting a routine and figuring things out.  Owen had his first PICC line dressing change this morning and he was totally nervous.  Despite my best efforts to let him know it's a simple band aid change, he was still remembering the stitches getting cut out and all the blood.  The nurses were phenomenal and he did great with only a few tears when the hair was being ripped off his arm.  When we were done they said "you will get to keep the pillow case."  Very cool because Owen loves football and how cute is that fabric?

Before we headed to cardiology clinic, a nurse found this Spiderman wallet in a treasure chest and was so excited to give it to him.  She also gave him a penny to start saving up his money. Pretty cool.  Cardio clinic went great.. Owen is up to 41lbs and 43"... he just keeps growing!  Dr R wasn't in today, but we saw Dr Kaufman who joined our team after working in the heart failure clinic at CHOP for many years.  She was really sweet and Dr H came in to visit as well.  There is nothing more reassuring for a parent than knowing how much your child's medical team cares about their patients.  Owen is well cared for here.  

All things look stable with Owen's echo.  There was no noticeable change from starting Milrinone, but that was to be expected.  We should mostly see an increase in energy in the upcoming weeks, which is already evident.  Look at this goofball.  The biggest concern I have lately is his overall weakness... he can't walk more than a few minutes without being fatigued and totally blue.  Milrinone won't help with that unfortunately, but he keeps pushing himself so we can work on building those leg muscles.

When we arrived back to the RMH (home), I had a package from FTD with silk flowers.  I love them and they add a little color to our room.  Thank you to my Heart Mama friends.. I miss you all so much!!

We also got to Skype with these cute girls.  Kam is up at the lake with her cousins and they are having a great time.  Kam went waterskiing for her first time and said she had a ton of fun.  Thanks for taking care of our baby girl.. I'm glad she's having so much fun.

We are so grateful for modern technology that keeps us together when we are so far away.  We can't wait to see Sis and Daddy next week!!  Speaking of technology.. Owen's iPad still hasn't shown up, but they are keeping their eyes out for it.  I have the iPad locator set up on icloud and over the weekend it showed the device offline, now it doesn't show up as our device at all. 

Thanks to the generosity of two sisters... Owen has a new iPad.   I took him to the Apple Store this morning and told him we were going to see if they could track his old iPad.  Then they came out with his new one and he was almost in tears he was so excited!!  It was beyond generous of Corri and Janel and Owen wants to say THANK YOU so very much!!  We are still trying to figure out how to sync up our iTunes to his new iPad so we can get all his speech therapy and handwriting apps back.  I'm sure Owen will figure it out before I do.  I can't wait to give back and pay their generosity forward.

Thank you all for your prayers, homemade cards, packages, donations, words of encouragement, support and love.  We love you all so much and we are not alone on this journey.. not at all!! Hugs from Palo Alto!!

Arts and Crafts

Can you believe we have been in Cali for 2 weeks already? Today we did a little swapping out of rental cars. Then it was time for me to switch out Owen's IV bag of Milrinone.  I had to remember what to connect/disconnect and where to use the alcohol.  There was one mishap where two pieces didn't fit, turns out they didn't go together (sigh), but I figured it out.  Lots of masks, gloves, alcohol and I did it!!

The major perk of the RMH is all the volunteers that provide dinner each night.  Tonight we had a fabulous homemade Chinese dinner... so good.  No cooking.  No cleaning up.  No dishes.  I could get used to this! 

After dinner another company came in with arts and crafts.  Owen made a puppet and called him Zoomi.  It took the volunteer and myself a good fifteen minutes to figure out how to turn a sock into a puppet, but we made it happen.

Owen also made some little stick puppets.  He was entertaining the volunteers with his silliness.

Just as we were getting ready to leave, he decided he wanted to try the turtle out.  These are really cool and I'm going to have to find them somewhere.  You peel the backs off of these little foam cubes and just stick them on.  So easy!  I didn't have to clean up the million little white paper backs though either.  It was fun.

We are making the most of our wait here.  Tomorrow is a day full of doctor appointments and we may catch the end of Camp Ronald McDonald.  Wednesday is a field trip day.. no idea where yet.. but it will be an adventure!

My 34th Birthday

Today was my 34th Birthday!  I missed my hubs and Kam sharing the day with us, but we made the most of it.  We ventured out to Target and bought some food to get us by for the next week.  Lots of healthy, quick grab meals like Tuna, BLTs, turkey and produce. 

This is the view from our RMH room... that,my friends, is Stanford Shopping Center.  Thankfully I am too poor to afford to shop at 99% of the stores in the mall... Juicy, Cartier, Neiman Marcus, Rolex, ect... not happening.  I do love all the little shops, restaurants and gardens around.  It's a beautiful mall and Owen loves to walk around.

Owen preferred to do a lot of laying around today.  I am not seeing any noted improvement in his cardiac output since starting Milrinone, but maybe he just needs more time.  He is still so sore from his hour in the cath lab.  Bruises all over his little body and he can hardly transition from sitting to standing.  I can't lift him under his arms without him wincing in pain.. poor guy.  He doesn't hurt where the actual PICC line is placed, but moreso where there were numerous failed attempts.  :(

Tonight an organization brought in a yummy taco bar for dinner.. the guacamole was fab!!  Then Owen and I walked over to Sprinkles for a couple birthday cupcakes.  Having a Sprinkles staring at me in my window each day can get dangerous, but this was my first visit and I will have self control. 

Owen and I are getting settled and finding our routine.  There is a different organization bringing in dinner each night this week.  We are so very thankful for all the volunteers and kindness from complete strangers.  It is not easy living with 45 other families in one house, but we are so grateful for an affordable roof over our heads so that Owen can get the healthcare he needs. 

I don't know if I posted this on the blog before or not, but Owen also has a Facebook page... Owen's Superhero Heart.  I sometimes do updates there when I don't have time to update the blog.  The last couple days have been emotionally draining so I haven't updated as much as I would like. 

Tomorrow starts a new week and hopefully Owen's lost iPad will be found. 

Boy of Steel

We survived our first night in the RMH. The air mattress was a little back breaking, but it was doable.  I think we were both ready to get outside and explore a little today.  We went downstairs to the kitchen for breakfast and to blend Owen's gtube feeds for the day.  Then we headed back to our room to get ready for the day.  Turns out Mommy didn't have any clean shorts or pants.. hospital life.. so we did a few loads of laundry first.

We decided to head north to Redwood City to finally see Man of Steel.  Owen has been so excited to see the new Superman movie and it did not disappoint this boy.  He was smiling the entire movie and kept giving me the thumbs up.  Now he wants to spend his money on a new General Zod and Superman toy so they can have an "epic battle". 

We decided to grab a grilled cheese at The Melt next door to the theatre.  It was pretty delish and for a $5 dinner, it can't be beat.  We hit up Costco on our way home for a super plush memory foam mattress topper... best money I ever spent!! I think I'll be sleeping much more soundly tonight. 

Owen got a couple packages over the last few days... he is so thrilled every time our phone rings because he knows he's going to get a package!!  Owen got some fabulous tracer books/activity sets from the Courvisier Fam, a fun box full of goodies from Intermountain Healing Hearts, a box from the Blutrich family with a disc gun and a box from the Atherton's with a Superhero dress up set!  Thank you all so very much for all your generosity.. it totally made Owen's day!!!  He now has a nightstand full of goodies. 

We did a little painting today so he can start decorating our room with a little art work.

With Owen's IV pump and bag he can't move far.  We are so used to having a long extension on his oxygen and he has freedom and independence.  His IV bag is way too heavy for him to carry since he's so weak, I have to carry it around for him.  So anytime he wants to move around or do something, I have to walk with him and carry his bag.  Not fun.  We are praying for a heart to come soon!! 

Tomorrow I will be a year older.  I am thinking we will take a long walk and see what we find.   Today started off pretty rough, but it's going to get better.  We just need to find our routine.  Thanks again for all the prayers and support.

Ronald McDonald House

It was not one of my best days.  We had an early morning wake up from a cardio fellow "Mom..we are going to do a quick discharge echo and get you guys out of here quickly.. we really need your room."  Yay... except for that I didn't have any IV supplies from the home pharmacy yet.

We packed up, ate breakfast and were out of there by 10:30 as soon as we got his IV Milrinone and pump ready to go.  It's all me now.  We had wagon full of medical supplies, our single suitcase and meds to drag over to the Ronald McDonald House.  I was in tears before I hit the parking lot.  It was just such a rush of crazy and then the reality just sets in that we aren't going home.. not for a long time.  This is our new home. 

I forgot to take pictures of the wicked awesome 1990 mauve and green comforters that match the green carpet(ish) flooring.  I gave the room a full scrub down when we arrived with the hospital disinfectant wipes.  I also tore the bedding off the beds.  Owen and I checked in at 11 and after three loads back and forth to the car, we got things unpacked quickly. 

We had to buy bedding, a TV (none in the room), a bath rug and some necessities.  I had a list of things in my head, but I was so exhausted when I got to Costco, it took everything in me not to break down.  I felt like I was a college student in a new place, I don't know anyone, I don't have anything I need... it was exhausting.  Only then I look down to my brave boy sleeping in his stroller with his oxygen tubing, Gtube, IV pump and PICC line and it's so real. 

We made it through Walmart and forgot just about everything we needed but ended up with lots of produce, so at least we have breakfast covered. 

This is our view when we walk in our door.

Our Bathroom.

Our bedroom.  I bought a tiny TV because it was cheap and functional.

This is Owen's medical supply drawer. I have so much more coming on Monday, I will have to organize better... but you get an idea.

This is the closet.. formula for backup, Press n Seal to cover the PICC line when he bathes, and the Sharps container for the Heparin syringes.

That's a tour of our new digs.  We have a community kitchen and laundry room on the first floor.  The kitchen gets crazy at all hours of the day, so we have to avoid the germs as much as possible.  Tonight was McDonalds night at the house and Owen got a chicken happy meal.. it was the first time he's ever had McDs and he wasn't impressed.  It was nice of them to donate so much food though. 

Owen is sound asleep.. I am hoping to join him.  I miss home. 

Mommy Training

Today was a busy day for me. I spent a good hour this morning finishing up my training in how to care for Owen's new PICC line and Milrinone.  It's all very intimidating and I hope to have it figured out before we are discharged tomorrow.  I had to learn to program the infusion pump, how to manage the Milrinone bags and put it all together.  I have to prime the iv tubing, use lots of alcohol wipes for fifteen seconds here and there, wash hands, use gloves, wash hands again, touch this, don't ever touch this, wear a mask for this, and then we had to learn how to take care of his other catheter. 

Owen has a double lumen PICC line.  One catheter runs his Milrinone continuously and I change the bag every 72 hours.  I'll have to do the whole process of unplugging it each time I dress him... each time I disconnect him, I have to do the whole sterilization process again to avoid infection in his line. 

The other catheter isn't in use most of the time, but I have to keep it from clotting off.  So daily I have to do a Heparin flush and so the entire sanitation process continues.  I'm sure it will be like clockwork soon enough, but right now, it's totally scary.  I have been doing his Infusion changes today from one med to the next as we wrapped up his IVIG.  It's nice having the nurses walk me through it. 

Tonight I learned how to wrap it up for bath time.  He can't submerge it in water and we can't get the line wet, so we wrapped it in a diaper and used lots of tape and then a bag covered that.  I can also use Press and Seal wrap and was given a few other options.  Well find what works for us.

Owen is still visibly sore and has a tough time getting around.  They must have done a number on him in the cath lab.  We went to the playroom for a couple hours this afternoon.  I had to leave for an hour to go check into the Ronald McDonald House.  Our room was not at all what I expected... it's going to take some work to make it homey.  I am thinking a rug to cover up the carpet and some new bedding for the beds will be a start.  Tomorrow.

 

Tomorrow is tentatively our discharge date.  It's hard to believe Owen has been in the hospital for a week now... wow!!  Owen will have weekly cardio visits and PICC line dressing changes.. which I am dreading.  Thank you for your continued prayers and support.  Owen did get a few packages at the RMH but we haven't picked them up yet.. as well as several online LPCH cards which he LOVES!!!  Thank you everyone for your generosity.

Fun Day.. Tough Day

It been a tough day for Mr Owen. He woke up feeling really stiff and wouldn't move either arms or hands. He kept saying his arms and shoulders were achy. We gave him Tylenol and he was excited to ditch the two IVs in his right hand just in time to head to preschool at 10.  There were bubbles and trains, but he was visibly sore so he sat at the rice table and played.

Our new friend J. came in and sang to the couple kids that were there.  Owen was so happy when they brought out a box of instruments so he could play along.  He beat the cymbals together on beat for each song.. the boy has rhythm.  It was great therapy for him!

He really wanted to walk to the library after preschool to return his books and check out new ones.  Half way there his legs started shaking with fatigue so I gave him a little lift.  He insisted on walking back to the room and wouldn't let me get a wheelchair or anything to help him.  Such a tough guy.  He was almost in tears when we got to the bed because his legs were achy.  I got him settled in bed and he fell fast asleep for two hours.

Meanwhile, his new PICC line wasn't drawing blood and had a hard time flushing.  Then we started to see blood, which isn't good.  He was in a lot of pain and wouldn't even move this arm an inch.  We had the vascular team come look at it and they ordered an ultrasound to make sure there were not clots in the catheters. 

Great news... all was well... no clots.  The worst part of the day was having the dressing changed and stitches snipped.  The vascular team said the leaking blood was the stitches being pulled on every time he moved, which explains why he was in pain.  Owen got a dose of Ativan to help with the anxiety and he did so great.  It hurt and he was crying, but he held still and was super brave.  Then he was pretty happy to get a Spiderman Spiderweb on his arm after. ;)  His arm is feeling much better and he's even starting to use it a little.  With the change in direction and movement of his arm, we have a perfect flush in both catheters and we even got his pre-ivig labs drawn.  Such a relief.

He got to play Wii for 2 hours tonight in the tech center of the play room. It was a nice reward for a really brave boy.

 We came back to the room, changed into jammies, then had some facetime with Sis and Daddy.  It was the best ending to our crazy day.  IVIG round 11 is starting now.

PICC Line Day

Today was PICC line day... which means one step closer to escaping the hospital.  Owen couldn't have anything to eat after midnight and his procedure was scheduled for 2:30pm... he didn't complain once.  That my friends is a trooper!!  I fasted with him and I was starving, so I know he was too.

We went for a morning walk around the 3rd floor and discovered the library.  There were a bunch of books and DVDs to check out.. so fun!

We spent the morning reading books, watching movies and playing card games.  I think we may have a room at the RMH come Thursday (which we are aiming at for discharge) and I started my Milrinone teaching.  It was a little intimidating learning all the IV care, infusion pumps, information about the Milrinone, ect.  I'm sure I'll learn it quickly and it will be second nature, but this just got REAL!!

At around 3:45, they called us and said they were coming up to get Owen to take him to the cath lab.  I used the super sterile surgical wipes all over his body and got him in his hospital jammies.  He was so ready to go... no fear.  I get more nervous about all the anesthesia and procedures than he does.  The whole walk down to the meet the cath team, he was chatting up a storm.  We walked over to the cath lab with the anesthesia and cath lab team and Owen was given a dose of IV Versed... he was loopy in seconds. "I got this.. let's do this"

Owen was in the cath lab for about 90 minutes and I met him in recovery. We woke him up from anesthesia and headed up to his room.  He is still loopy and it's almost 8... so funny.  He just told his nurse.. "You are soooooo pretty.. you know that?"  Then asked the cardio fellow when she was going to take his other IVs out.. which she replied "in a couple hours."  Owen was shocked.. "IN A COUPLE HOURS??"   I think they may expedite that request.  ;)

Owen's PICC line.  He is complaining that his arm hurts a little when he moves it.. I don't blame him.  OUCH!!  This will stay with us until transplant, so I am hoping he'll just get used to it.  We are giving him Tylenol now to help with the pain. This line runs from his forearm all the way to his heart.

This is Owen's Right hand... poor guy.  He is working on getting these two IVs removed tonight before bed so he can actually have a useful hand/arm.

Here is my super brave, a little loopy, very hungry boy!!  His chicken and grapes just arrived for dinner and after fasting a billion hours, he is going to love it!

Thank you for all your prayers.  Here's to a restful night sleep and another big step towards discharge.

On an entirely different note.. HAPPY 14th ANNIVERSARY to the best husband ever!  So sorry we couldn't spend this day together, but there is always next year. I love you babe. 

And Kam... I hope you're having fun at Disneyland and on the beach with Gma, Gpa and Gigi!!  Love you Sis.

Another Day in 3West

We have had a busy and productive day in 3West. Rounds started bright and early at 8:30 with a big group of cardiologists bedside. I was impressed! It was decided to give Owen another day to see how he is responding to the Milrinone. We held off on starting his Captopril again because his blood pressures are low/normal and Ace Inhibitors will lower that even more.

Tomorrow at 2:30, Owen will go to the cath lab for his PICC line placement by our favorite cath lab doc.  He'll be put under general anesthesia by a cardiac anesthesiologist.  It will be a long morning with a hungry boy.  Prayers appreciated that I can keep him busy and occupied so he doesn't think of food.

Owen had  a busy day!  We went to preschool from 10-11:30.  He had PT around 1:30 in his room.  The PT was so nervous to do anything with him because his sats drop into the low 50s with any type of exercise.  We then went to the playroom from 2-4pm.  Owen found the Gamers room in the playroom area and it is filled with lots of fun video game systems and big screen tvs.  He parked in front of the wii and he was in heaven. 

Owen found this cool zombie toy in the action figure box of the play room and just had to check him out.

It's been a busy day, but Owen is active and in amazing spirits.  We have one more round in the playroom at 6:30 tonight and Owen is very excited. 

Each time someone walks by our room he says "COME IN!"  He just loves the attention. 

3West Stepdown

After a great night of sleep.. Owen in ICU and the hotel for me.. we are having a wonderful day! Owen got a wipe down bath this morning followed by four laps around the PICU. He may have been motivated to continue walking because of the entourage of nurses that cheered him on each lap we took. 

As soon as we got to our room, it was time for rounds with the 3West cardiac team.  They insisted on us placing a second IV for access.  I tried everything to get out of it, but they really felt more comfortable with backup access in case his other IV goes bad.  So after a few tears and one poke, we have two IVs in his right hand.

Before noon, we were moved upstairs to the step down unit.  Yay.  The one good thing about being listed for transplant is the private isolation rooms.  Owen insisted on walking up and pushing his IV pole the entire way.

Owen was excited to entertain a whole new crew of nurses.  He was in full comic mode and was pretty hilarious.  Dr R. came in for a visit to see how Owen was doing and Owen was laughing hysterically.  He had used his IV pole to trap his nurse between the chair and the pole.  He thought he was a funny guy and she was never going to escape.  Obviously, he's doing great!!

While his nurse was getting the wires untangled and Owen settled in, he used her phone to call and order his own lunch.  Chicken strips for the third meal in a row.. yuck... with a side of fruit/veggies and a bottled water.

Lunch came while he was settled in watching (for the fourth time since we were admitted) Mars needs Moms. 

We were also informed that we should be wearing these hefty masks around the hospital when not in our room.  They are doing construction next door working hard to build the new LPCH but digging that deep in to the ground stirs up a lot of yucky stuff, so they are being cautious.  Owen's nurse wanted to make his mask fun.... He loves it!

We are having a relaxing day.  We will continue monitoring the Milrinone for today.  Tomorrow we will restart his Captopril, or even switch to (twice a day) Enalapril.  Owen gets to take a real bath tonight in his private bathroom which he is pretty excited to do.  We will know a weekly plan tomorrow when the full cardio team is back.  Have a good night!

Happy Father's Day!!

I wanted to write a post dedicated to the best husband and daddy.  We are sad today that we couldn't spend Father's Day together.  I appreciate all that you do for us, working hard, keeping it real and always being there for us through anything.   Thank you for our two wonderful babies and being such a fun dad.  Owen misses you like crazy and can't wait to do the super ninja slicer chop on you in a couple weeks.

Thank you for taking care of our baby girl while we are gone.  I am grateful for the bond you two have and that you two are so alike in personality.  I know she will be okay as long as you are with her.  We miss you both so much.  We love our nightly Skype chats but can't wait to be together again.

Do something for yourself today.  I wish we were there to spoil you and give you the day you deserve.  Love you babe.  Happy Father's Day!

Monitoring Milrinone

We have had a busy day in the PICU. Well, not super busy, but you know what I mean. Owen relaxed most of the morning watching all the movies they have on the TV. There is an awesome entertainment guide on the TV with just about 40 movies to choose from. We are on our 3rd time watching AstroBoy, Wall E, and Mars Needs Moms. We took our giant double pole IV pump, oxygen, the stroller and Mr Owen to the playroom after he took a long afternoon nap.  The germs freaked me out and so we didn't stay long, but borrowed a few toys to disinfect and bring back to our room.  I think we'll just play in the outdoor gardens and playhouses from now on.   

When we got back it was time to eat lunch and stay out of bed for a bit.  With his IV tree and all his leads, he is a tangled mess.

The children's hospital's cafeteria closes at 3pm on the weekend so I walked the mile long (exaggeration) walk to the Stanford hospital to grab some dinner.  When I came back, the nurses were in Owen's room listening to his version of  Popping Tags.  He is the resident rapper tonight... serenading everyone with hip hop and a little Les Mis.  He's nuts.

Dr Rosenthal came in this morning to check on Owen and he was here for rounds.  Owen's blood pressure was low last night 70/30, but only when he was sleeping.  He had been awake for 2 hours and his blood pressure was back up to his norm of 90s/50s.  The plan was to increase his Milrinone dose to .5 and monitor his blood pressure for a few hours and then move him to the Step down unit for a few days. 

Owen's blood pressure remained super low all morning, so we decided to just keep him in the PICU for another night of monitoring.  Now that it's 6pm, his body is adjusting better to the larger dose of Milrinone and he's up to 105/48.  We also have all his Captopril out of his system which causes lowered blood pressure, so it may have been the combination of the two together?  I don't know.  I'd rather him be closely monitored in the ICU for another night. 

The best news of the day, depending on how you look at it... Owen is officially 1A on the transplant list!!  A new heart could come anytime, or it could be months away, all I know is that he is stable and doing well and for that, we are grateful! 

We plan on having a relaxing night.  Hopefully Owen will go to bed before midnight.  I also hope his nurse is a good one so I can head back to the hotel and pack up for an early morning checkout and get some sleep in a real bed.  I am grateful that Owen is so comfortable in hospital environments, especially the ICU.

PICU Day 1

Owen was finally admitted last night at 8pm. It worked out great because we had some time to make a quick run to Walmart and Costco to pick up a few things. Costco has the best easy to prepare individual salads so I grabbed a bunch of those for quick hospital meals. Then we made our way to the hospital.   Owen was settled in quickly and everyone was great.  We got all his med history out of the way, admission questions and an IV placed within 2 hours.  Record time. 

The PICU rooms are not fancy and they are so tiny.. I asked where the kids go to the restroom because there are no restrooms on the unit.  The nurse showed me the cupboard potty.  Awesome. 

Instead of an IV team there was a way awesome RN that came around and put Owen's IV in.  I have seen these Buzzys before, but wondered if they work.  They had them on the unit so we tried one out.  It was MAGICAL!!  Owen didn't flinch when his IV was placed.  He didn't even feel a poke.  We didn't even use the ice pack with it, just the vibration was enough.  I need to buy one.

(source)



At around midnight Owen decided it was time to finally go to sleep. He told me to go ahead and go back to the hotel to sleep... such a brave boy. He slept like a rock. The nurse had my number and I told her to call me for anything, even if he woke up scared and I would be here in five minutes. He did great, no issues with the Milrinone.

 It's 7am and cardio has already been by and the new nurse has been in to do all her vitals. I feel so much peace here and trust with his team. Fifteen minutes never goes by that a nurse isn't checking in on Owen and making sure he's okay. It's so nice. The plan today is to increase his Milrinone dose a little and see how he tolerates it. We want him at a therapeutic level, but we also need some wiggle room to increase it if needed. His UNOS status should be updated soon too, so he will be at the top of the transplant list.

  All things are good. Lots of positivity!! Owen is loving the attention... of course. He chats up all his nurses, has already requested Child Life to stop by this morning and he's ready to have a fun day!

We have a bed.. tonight!

Today we woke up rested and relaxed. Things are slowly falling into place and my stress level is much lower.   I'm starting to not feel a little blah.. so I'm trying to chill out a bit.  We got a call from our transplant team at around 11 and they said there would be a room in the PICU opening up later today.  It's not the Cardiac ICU which makes me a little nervous considering we are starting IV Cardiac meds, but I was assured that it would be okay and that they are working closely with cardio.  We will move over to the CICU as soon as a bed opens up.. hopefully over the weekend. 

While we wait for the call to come in, I packed up our laundry and headed over to the RMH to throw a load in.  Turns out most of the washers were out of order and the others were in use.  Bummer.  We loaded back up and headed to our hotel to use the coin operated ones in the basement. 

Now we are relaxing in bed enjoying the last bit of relaxation before the next week of hospital life sets in.  The social worker said I'd be able to sleep bedside with Owen in the PICU, which you cannot do in the CICU, so that's a positive. Owen was nervous to be alone tonight in a new hospital. 

We have almost finished making all our plans for transportation, housing, medical supply delivery, and insurance kinks.  Daddy and Kam won't be able to come up until the first week of July, but it turns out Kam gets to go to Disneyland and Lake Roosevelt with fam for the next couple weeks.  So it all worked out!!

Prayers moving forward that Owen doesn't have any adverse reactions to the Milrinone and/or IVIG.  He will be put under for his PICC line placement sometime this next week as well.  I will be posting more often to keep family/friends updated.  The support and love from everyone has been beyond wonderful and we are so grateful for everything!!! 

I'll post again from the PICU tonight.

Palo Alto Day 3

It has been a long, draining day.  We got the call this morning that there was no way we would get a bed today, and the prospects aren't looking great for tomorrow.  I am normally so optimistic and positive, but today I broke down and cried.  I miss my family.  I spent so much time preparing for this trip/move and I had a plan in place.  I only packed enough clothes, medicine, syringes, oxygen supplies, formula for five days.  I packed a couple other bags and left them home so C could bring them up with Kam on Saturday. 

At this point, Owen will most likely not be outpatient by next Tuesday.  Kam can't stay while Owen is inpatient because she's a sibling... and I agree that she doesn't need to be in the hospital.  I had no place to stay going into next week and I hit my breaking point. 

My plan was to either grab a flight home today and come back in another month and hope things were a little more organized.  Or, stay here and just ride things out.   I had a long talk with the social worker and later received a call from the RMH that we have a temporary room next week.  Hopefully during that time a permanent room will open up.  At least we have somewhere to sleep that is close to the hospital.  The other issue was a room for Sunday and we solved that tonight.  Next up is figuring out the rental car situation.  I'm sure I can maneuver Palo Alto on foot and by bus, but doing it with Owen and his equipment is going to be tricky.  Now that C can't come up and leave Kam, there is no sense in them driving up.  So sad.

I was able to get the pharmacy to compound meds and mail order them to me by Saturday.  Problem solved.  We have somewhere to stay.  Problem solved.  I'll tackle the transportation issue tomorrow as well as taking on the task of arranging his shipment of his gtube supplies. 

Tonight we ran to the store for a few things to get us by.  I don't like eating out and we have been successful with produce, cheese and nuts in our room.  Tonight we decided to hit up Rubios on our way home and Owen charmed the socks off the employees so they gave us our meal for free.  So nice of them and we had some fantastic fish tacos on the house!   We even have plenty for lunch tomorrow ... score!

Tonight we will cuddle and get another good night's sleep.  Hoping tomorrow brings news of an open CICU bed!!  If not, the hard work and stress is done.  We will just enjoy Palo Alto and count our blessings that Owen is healthy enough to be outpatient!  It's hard to lose sight of the big picture.