Germ Defense

We are settling into our new room on the floor.  I ended up sleeping on the sofa in Owen's room last night and it was a LONG night of pumps and alarms going crazy!  We got the kinks worked out today.  Owen was up and ready to play this morning.  He wasn't too thrilled about getting an echo and was a stinker when it was time for PT.  Then he crashed for about 3 hours!  He was so tired.  He woke up a little more chill and was thrilled that Child Life bought him Pop The Pig (he requested it last week and since they didn't have it, she ordered it for him).  He played with Allison for a while and then settled in to watch a movie.  We got his med lines all changed out this evening and I feel wiped out.  I will head back to the RMH soon so I can get all my laundry caught up and get a quick night's sleep.

We have family coming over the next week so Owen is thrilled.  We chatted in rounds about precautions and the issue is not so much him spreading germs around the hospital.  Since his absolute Neutrophil count is WAY too low, we need to keep infection away from him.  So we are on reverse isolation.  Anyone that comes to visit has to be 150% healthy and wash/scrub/sanitize like crazy.  My hands are raw from all the handwashing I do and I always wear gloves around the little guy.  Lets call it Germ Defense.

I'll post more tomorrow but I am falling asleep on my laptop.  As soon as Owen has drifted off I will smooch him and head out.  He has had phenomenol nurses on the floor thus far.  Praying for stability until he gets a heart.

Moving on UP!

We had a very BIG day!  Owen was moved out of the CVICU and onto the Cardiac step down unit.  He was so excited and things moved pretty quickly this morning.  We pulled his arterial line and packed up.  This morning was also his last Lovenox shot for today... if we can keep his INR above 1.9 then we can stay off Lovenox, otherwise we will go back to injections.  We already miss our nurses and friends in the CVICU, but will be back soon.  At least Owen got a few minutes in a wheelchair to explore the hospital on his way to his new isolation room.

Stacey brought Gage, who is also waiting for his heart with a Heartmate (heart in a backpack basically).  He came by with his siblings and they brought markers so the kids could play Tic Tac Toe on the window while seperating themselves at the same time.  Hoping these two boys get their hearts very quickly so they can hang out and play.  Their entire family knows all about transplants as this is their fourth transplant in the family and the kiddos have spent plenty of time in these same rooms.  The markers were a genius idea and Owen is loving them.  Thanks!! :)  Owen drew himself a moustache.

The first thing I said was that Owen didn't have too much junk.. then I packed up and seriously?!  How did we accrue so much in the past four weeks?  Insane.

Allison (another heart mom) came by with Josh (HLHSer who will be waiting for a heart in the near future) and his brother Sam.  She is a rockstar and brought her clippers so she could cut Owen's hair for me.  He looks a million times better so THANK YOU!!  They also brought Owen a little racecar and some snacks.  The boys had the best time with that little racecar and the nurses got a good dose of what's to come with Mr Owen on the unit.

Today was the last day we get to wear these ridiculous diapers.  I also realize I need to get him lots of pajama bottoms since we can't do shirts and he won't be running around in his undies.  It's nice to have an actual bathroom in his room (unlike the ICU).  After Owen's haircut, he got a very LONG bath which he LOVED! It was his first bath in 5 weeks... he didn't want to get out.

Stating the obvious... Owen had a great day.  He looks really good on the outside.  His heart function isn't great, but the real worry is his coronaries and the high risk of cardiac arrest.  We are careful with his isolation restrictions, so he won't cross the little black line from his room into the hall.  He sure loves to stand REALLY close to the line and drive his little car around.  I'm going to try to get an exception to let him ride around in one of the cardiac cars (so fun) to drive around the unit with his mask/gown this week.  We'll see....

Back home.. Kam was playing Sims with the cousins and Logi just really wanted her attention.  He will just lay by her and play with her hair.  The LOVE is real!

I am so grateful for where we are today compared to five weeks ago.  Praying for a stable heart until his offer comes.

Tuesday PROGRESS!

Owen is feeling better and stronger everyday.  The doctors that have been off for a week come back and are all in awe of his where he is today.  He was up and out of bed for PT and again to take a walk around his tiny room today.  He loves to walk over to the Nurse's supply cabinet and enter the security code.  Then he peeks through every drawer looking at all the supplies before locking it and doing it all over again.  He stands at the door of his room and just looks down the hall and waits for people to pass by so he can chat.  We looked out the windows in his room and you can watch the construction of the new hospital being built and they have random giant animals (dinosaur, bear, tortoise) outside the window.  

We have talked about moving on up to the floor (maybe tomorrow).  I am really nervous about the move, but I know he doesn't need ICU level of care at this point. He will have a 3/1 nurse ratio and a cardio is always present 24/7 on the unit.  We have good blood return from his central PICC line so we can pull his Arterial line soon.  He will just have his PICC line in his Right arm running Milrinone, TPN and Lipids... AMAZING!!!  We are always reminded how critical he still is and that his coronaries can take him down at any point.  Continue praying for stability until a heart comes.

Owen is in good spirits is eating more!!  He drank a lot of water today and sent me to the mall for soft prezels with salt.  He ate a few pretzel bites and that's good enough for me.  I pushed his tube feeds a bit and I got 10oz in him... which is awesome compared to the 4oz he has been tolerating.  Baby steps in the right direction.  

I got a little video of Owen playing stomp rocket for PT today.  He loves stomping the rockets into the hall and seeing what he could hit with the foam targets.  At the start of the video you can hear him say.. "I could do this all day...."  His voice is back and he is much less breathy between words.  Great progress.
Back on the homefront... the temps are sizzling!  Kam has been driving as much as she can so she take her drivers test soon.  Larissa made her drive through her first drive through today... I'm sure it will be the first of many.

Logi would be lost without this big Sis of his.  He cuddles her and plays with her curls... she is such a great sis to him.  I am so thrilled that they have eachother right now.. she needs him as much as he needs her.  They both love to facetime with Owen and I can't wait until they are all together again.. ONE WEEK!

Until tomorrow...

Tuesday PROGRESS!

Owen is feeling better and stronger everyday.  The doctors that have been off for a week come back and are all in awe of his where he is today.  He was up and out of bed for PT and again to take a walk around his tiny room today.  He loves to walk over to the Nurse's supply cabinet and enter the security code.  Then he peeks through every drawer looking at all the supplies before locking it and doing it all over again.  He stands at the door of his room and just looks down the hall and waits for people to pass by so he can chat.  We looked out the windows in his room and you can watch the construction of the new hospital being built and they have random giant animals (dinosaur, bear, tortoise) outside the window.  

We have talked about moving on up to the floor (maybe tomorrow).  I am really nervous about the move, but I know he doesn't need ICU level of care at this point. He will have a 3/1 nurse ratio and a cardio is always present 24/7 on the unit.  We have good blood return from his central PICC line so we can pull his Arterial line soon.  He will just have his PICC line in his Right arm running Milrinone, TPN and Lipids... AMAZING!!!  We are always reminded how critical he still is and that his coronaries can take him down at any point.  Continue praying for stability until a heart comes.

Owen is in good spirits is eating more!!  He drank a lot of water today and sent me to the mall for soft prezels with salt.  He ate a few pretzel bites and that's good enough for me.  I pushed his tube feeds a bit and I got 10oz in him... which is awesome compared to the 4oz he has been tolerating.  Baby steps in the right direction.  

I got a little video of Owen playing stomp rocket for PT today.  He loves stomping the rockets into the hall and seeing what he could hit with the foam targets.  At the start of the video you can hear him say.. "I could do this all day...."  His voice is back and he is much less breathy between words.  Great progress.
Back on the homefront... the temps are sizzling!  Kam has been driving as much as she can so she take her drivers test soon.  Larissa made her drive through her first drive through today... I'm sure it will be the first of many.

Logi would be lost without this big Sis of his.  He cuddles her and plays with her curls... she is such a great sis to him.  I am so thrilled that they have eachother right now.. she needs him as much as he needs her.  They both love to facetime with Owen and I can't wait until they are all together again.. ONE WEEK!

Until tomorrow...

Monday FUNday

It was the start of a busy week around here.   We are just hanging in there passing time.  We played board games all afternoon and listened to music.  Owen went for a walk around his tiny room.  They won't let him out of his room (we tried), so he wanted to sit right at the open door and look into the hall.  Silly boy.

He was up over a pound today of excess fluid.  We switched his IV diuretics to Oral and he was fluid positive.  We'll see how he does tonight with bigger oral doses.  He is getting a lot of diuretics.  We still have no clear reason why his Coumadin dose is so high and his iNR isn't budging.  So frustrating.  We are working on nutrition and each day we get a little better.  I woke up at 5am this morning to run to the store and grab some groceries/snacks.  He ate a few peanuts, a couple chips and drank a lot more than usual.   I was also able to push a little more feeds into his tummy.  Tomorrow will be better day and he's already asking for pretzel bites from the mall.  It makes me very happy! 

Everything else is hurry up and wait.  One of our heart buddies in Phoenix is getting his heart tonight so keep Mr. Kaiden in your prayers.  He was listed for the same reason as Owen but was at home, stable, listed status 2.  It's almost unheard of to get a heart as a status 2, so it's pretty amazing!

Owen loved people watching and chatting with anyone who stopped by to listen.  The boy is a chatterbox!

Back home.. the kids made homemade pretzels while Logi took a long afternoon nap.  I'm sure he was thrilled to eat their creations.  Teenagers are so fun... this boy is very lucky.

Sunday

Sunday is always quiet here. There have been talks of maybe heading to the step down unit soon.  I have some very valid concerns about it, but pending a solution for those, I'm excited to move to a private room on the floor.  Owen got out of bed today and walked around his room for about 5 minutes.  It must've felt good to walk because he begged the doctors to let him go walk around the unit.  Since he is on contact precautions due to the drug resistant Pseudomonas, they wouldn't allow it today but will talk to the Infection Control team tomorrow.  Heading to Step Down would mean more freedom but Owen won't get to go to the library or play rooms.  Major bummer. 

Owen ate a couple Jalapeno potato chips this afternoon and a string cheese tonight.  It was something.  His poor tummy was pretty nauseated after both but at least he ate.  He's getting Zofran IV now so that he can tolerate his many night meds I put in his Gtube. 

We are still inching up on his INR... his goal is 2.5 and he is stuck at 1.5.  He is getting 9mg of Coumadin which is an insane dose!  At home he was on 1.5mg and his goal was always 1.5-2.  He has a very healthy liver. ;) 

We played a bunch of board games, listened to music and watched a little tv today. Tomorrow starts a new week.  This is week 5 for us... wish us luck!

I got lots of facetime chat in with my babies today.  Logi belly laughed for me a few times and I just want to reach through the phone and smooch him.  Kam is doing great and Carson is holding down the fort seamlessly.  We can do this.

Silly Saturday

It has been a very quiet Saturday. We just keep busy to pass the time. The days are SO long.. they feel like an eternity. Owen played legos, watched movies, played iPad and then kicked my butt playing cards.  Nothing new to report and that means it was a great day!  The doctors really want him up out of bed and walking around.. "Where am I going to walk to?  I'm not allowed to leave the room.  Walking in a circle inside my room makes no sense."  Maybe we'll have better luck tomorrow...

Owen is perfectly happy chilling in his hospital bed and doing whatever he wants to do.  He actually requested chips and salsa tonight so I went to grab him some that I know he loves.  He was so excited to eat them but said they tasted gross. He then ordered Lays off the menu and said "These are salty!'  I found him some beef jerky in the vending machine and he actually ate a bite of it.  I don't think we'll make much progress until transplant.  I keep working on trying to get food in his Gtube, but he is nauseated all the time.  I haven't had coronary artery disease so I have no idea how he feels.  I am trying to think of how I felt the first trimester of my pregnancies where food sounds good but you are just too nauseated to eat it.  He is gaining weight (50.4lbs today) and so the TPN and Lipids are doing their job for now.

Most importantly.. he is himself.  He is silly and says the most outrageous things all day long.  Brushing teeth and doing sponge baths is a daily battle, but I ultimately win.  We talk about all the things we can't wait to do when we bust out of here one day... Take a shower,  go to the mall, go outdoors... the simple things in life.

Kam sent me this silly face pic of Logi tonight.  I love that I can facetime and sing him songs.  He loves his mama and I can't wait to get plenty of snuggles in soon.  We've got this!

Indirect Calorimetry

It was another stable day for Owen. We didn't make any changes. We sent of plenty of labs this morning and everything looks rock solid.  He's still neutropenic but we stopped his Cellcept so we should see the effect of that soon.  We increased his Coumadin to 9mgs a day which is insane.. we just can't get him to goal of 2-3.  He is still on Plavix, Asprin, Coumadin and Lovenox... and we watch each level carefully to make sure he stays therapeutic without overdoing it.  Owen asks every morning in rounds what his INR is so he can be done with Lovenox injections soon.  It's inching up to his goal.

The team ordered an Indirect Calorimetry test with Pumonology.  It calculates how much energy he exerts while at rest so we can get an individualized caloric goal for him  I really wanted to try it out, but I don't think I want to know how few calories I burn at rest.  I'm curious to hear what the final report on Owen reads.  Owen was skeptical of the bubble so I may have bribed him a bit and he actually liked it.

Janesa and her boyfriend came by this morning to visit on their way to Big Sur.  Janesa made me super yummy and healthy meals to eat all weekend.  Owen's Psychologist came by and taught him how to play "Trash" with playing cards.  He then taught Janesa and he has a new favorite game. 

It has been a good day and we are hoping for a stable weekend.  I looked up the data on OPTN and Owen is the only kiddo listed age (6-10) that has B(+) blood type in the entire nation as status 1A.  This data was updated as of June 17th when Owen was relisted as 1A.  Obviously things change and we can only take a heart that is no more than 2-3 hrs away.  I pray often for Owen's new heart.  That a grieving family will say YES to Organ Donation.  That Aly's family will know how much we love and appreciate the gift they gave us for the past three years.  Aly's heart has carried Owen through ECMO, Cardiac Arrest, Biopsy Neg Rejection and severe coronary artery disease.  I know he has a guardian Angel watching over him all the time.  It's all in God's timing and I am trusting that.

My kiddos made it home from the Lake safely.  They had a really great time and I am so grateful they are so well cared for.  Life is good. 

Here's hoping for a quiet weekend.

Finding Dory and Birthday

It has been another good day. Thank you for all the birthday wishes.. I absolutely feel another year older. Pixar did a special showing of Finding Dory this afternoon for all the kids in the hospital. Owen won't be able to leave his room... EVER... so we watched it on the tv in his room. Child Life brought by a personalized drawing of Nemo from the Pixar Illustrator just for Owen. The movie gave us some great laughs.

Owen continues to be stable.. but I am reminded by the team daily how very sick he is.  He has gotten very Neutropenic.  He is kinda like bubble boy and is very susceptible to infection his body wouldn't be able to fight since his WBC is so low.  We stopped one of his antirejection medications (Cellcept) today to help bring that count up to a "healthier' level.  I'm actually kinda of glad he is still on contact precautions from the Pseudomonas so that the nurses have to wear gowns, masks and gloves to protect Owen from outside germs as well.  We are not accessing his central or art lines unless we absolutely have to.  Prayers that all infections stay far away! 

Everything else is status quo.  He asked for breadsticks and buffalo wings tonight.. then decided he couldn't eat it when he got it.  Still no appetite even with the increase of Milrinone.  We will continue to inch up on his dose to see if it helps with GI issues.

It all comes down to finding balance with fluids, staying healthy and keeping things stable until he gets a heart.  We got this!

The kids head home from the lake tomorrow.  They had such a fine time with cousins!  I'm sure Carson is going to be thrilled to see our munchkins again. 

LPCH Day 30... No More O2

Today was another great day!  Owen ditched the Oxygen and is cannula free... YAY!  He is a chatterbox and his voice is getting a little stronger each day.  He still is really breathy due to heart failure, but he just keeps talking.  He has been playing his iPad for most the day, then legos and a movie.  His echo from yesterday showed a little improvement which is a huge blessing!  We increased his Milrinone today to see if it would help him feel hungry since it is an afterload reducer.  He still won't eat and he is still feeling nauseated throughout the day.  We try to limit the IV Zofran for the times we really need it due to possible drug interactions. 

Overall a good day and we are making progress in the right direction. It's time for dressing changes... every Wednesday.. it feels like we just did this.  Owen HATES dressing changes because it stings and burns.  A dose of Ativan, dressing changes and hopefully he will sleep like a rock tonight. Prayers for continued stability and a new heart!

These two are having so much fun at the lake.  Logan has been running himself exhausted!  I love getting fun little videos throughout the day.  Two weeks from today I get to wrap my arms around these two and I'll have a whole week of snuggles.  So excited!!

A Great Day

We had another great day in the CVICU.   Owen's oxygen accidentally unplugged and has remained unplugged for the entire afternoon and he is satting at 100!  I'm keeping the cannula on tonight just to be safe.  His RR is down to 30 from the 50s and his CVP is down to 15 (from 19-22).  You can tell he feels better because he is bored and wants to play  a lot.  He has been playing with stuff from all his packages.  Child Life keeps him busy with DVDs and Nintendo 3DS games.  He got another package today which turned out to be a giant Lego set that took all day to build and more tomorrow.  Thankfully the hospital has a "buddy" program and so this awesome pre med student from Berkley got to build Legos with Owen while discussing everything Batman.  Owen wanted to send Heart Kisses to honor Emery and thank her family for the sweet gift.  Emery went to be with Jesus last year while she was waiting for her heart.  Her thing was kissy faces...  

We are in a holding pattern and just treating his chronic heart failure until we get a heart offer.  We had a great day and I feel so blessed.  The CVICU was quiet.. until the code blue alarm just went off again.  It's a daily event and my heart aches each and every time.

The kids are having a blast at the lake.... Cliff jumping, boating, and hanging with cousins.  Logi is in love with Sam and has spent just about every day with him since I have been gone.  He cuddles him and feeds him.  I am not a dog person but this little boy may just need a best furry friend one day. 

Thank you for all the prayers and love.  Continue to pray for a new heart to come when the time is right and that Owen will remain stable until that day comes.  I'll wait however long it takes...

Out of Bed

Owen had a great day! He continues to be fluid negative and his HR, BP, O2 and RR are all good. His CVP is still pretty elevated in the high teens but baby steps in the right direction.  His chest xray even looked a little better (to me) today.  We are giving him plenty of IV diuretics and that means we find the smallest adult diaper and layer it with an infant diaper inside... then we strap it all on and it looks ridiculous but is super functional. 

Today Owen got out of bed for the first time in FOUR weeks!!  He stood on the scale and was a whopping 49.6lbs.  His little legs are so weak so we let him sit in a small wheelchair while we did PT.  He stayed in the chair for about 10 minutes and wanted right back in bed.  He was super proud of himself!  It was a good morning and he hasn't napped all day.  We played Legos, watched movies and he got two awesome packages in the mail.    It was a busy day so I'm hoping for an early bedtime.. Mama is TIRED.

Kam and Logi are having fun at the lake with cousins and I Love getting updates on all their adventures.  Daddy is missing his crazy kids at home but said he slept REALLY good last night. :)

Prayers that a heart comes soon when the timing is right and that Owen continues to remain stable.

Quiet Sunday

It has been a quiet Sunday.  Owen pretty much ignores me all day while he plays on his ipad, naps or watches movies.  I get called over when he needs to pee in the urinal or if it's time for meds.  Speaking of pee... there has been good urine output and he is actually fluid negitive tonight.  So ya for that!  His CVP pressures are still pretty elevated at about 16, but it's better than 22.  We did another chest xray today and the right lung looked hazy.  It could be that he was so fluid positive still and it was reflecting that.  Or it could be worsening Pneumonia, but he doesn't have any symptoms of that.  Prayers that the Pneumonia continues to resolve.  He is still listed status 1A... and we wait.

I sit in an old creaky rocking chair that I'm certain is an original from 20 years ago.  I have been catching up on Netflix shows.  Yes.. this is Gossip Girl.. no judgement (XOXO).  I have to do something to pass the time here.  I go to the RMH at around 11pm each night and I'm back here at 6am each morning.  The days continue to be long, but the weeks fly by.  FOUR weeks ago, Owen and I flew to Palo Alto.  How has a month passed already?!

A big shout out to the best Husband and Father!  He has been working and being a single dad while I am away.  Laundry, groceries, cooking (well, a little) and keeping up the house.  He is doing a great job of it all.  I was sorry we couldn't be together today or yesterday.  Yesterday was our 18th Wedding Anniversary... pretty incredible!

Today he did laundry and packed the kids for a week at the lake.  His Sister's family all headed to the lake and let my munchkins tag along.  It will be a fun distraction for all of them!  Carson will be super lonely in our quiet home, but maybe he'll get a good night's sleep. ;)

We are all making the most of the situation right now.  Praying daily that Owen remains stable until his new heart comes.  Tomorrow starts a new week.

Fluid Balance

Today was not my favorite.  I hear those code blues and see ECMO circuits being started and my heart just aches.  Owen's weight was up to 50lbs last night, but was only 47.8 the night before.  His respiratory rate is up to 40-50 and his CVP is up in the low 20s.  He is a bit fluid positive so we are utilizing IV diuretics to get some fluids off.. although by looking at him you'd never know.  We did an xray today and his Pneumonia doesn't look any better to me.  I know it takes a while for the xray to show improvement, but I just want to make sure it's not getting worse. Prayers for lots of pee!  

Owen had a good day.  He says the craziest things and always speaks his mind.  No filter.  

Still no food tolerance but we are running plenty TPN and Lipids to cover his calorie needs.

Tomorrow is a new day.. hopefully a very quiet day.  

Status 1A

Owen had another pretty good day. He is so lazy and doesn't have a ton of energy but he is happy. The best news of the day was that Owen was placed back on the transplant list status 1A!  Let the wait begin...

This little man still has zero appetite and says he feels nauseated most of the day.  He will take a sip or two of water and that's about it.  No food whatsoever.  He was super excited about the idea of having beef jerky so I grabbed some from the vending machine and he said "nevermind.. I just can't."  He is getting TPN/Lipids and I am giving him l0-20ccs here and there throughout the day. 

Today we finish up his 14 day course of antibiotics.  I am super nervous to get his antibody results back because there is a good chance that everything he has endured in the past 3-4 weeks have caused his antibodies to creep back.  Pray this isn't the case!  We should know soon.

Everyday is a waiting game and we just pray that he remains stable until his heart comes.

I took some pictures of the RMH for Owen because he really wanted to see what the new house looks like. I know many of you have asked for our address so here it is:
OWEN SIMMONS
RMH STANFORD
520 Sand Hill Road
Palo Alto, CA 94304
*It has to be addressed to Owen

  Here is my bathroom...

Bedroom...

The dining room...

There are a bunch of lounge areas and play rooms that I didn't get pics of yet on my way out.  It's gorgeous inside. 

Until tomorrow...

LPCH Day 24

Today was a pretty great day.  Owen woke up super sweaty and grumpy.  I thought it was going to be a horrible morning.  Things quickly turned around.  He watched a movie, played on his iPad and took an afternoon nap.  Physical and Occupational therapy came by, as well as Child Life.  He did his Tobramyacin breathing treatments and sucked it up when I gave him Lovenox injections. His little thighs are just covered in bruises..he is such a trooper.  He hasn't eaten a single thing all day again... but right now he is eating a few pretzels so I am very happy!  We didn't touch his meds today and we are just staying steady until we get a heart.  Owen will finish up his antibiotic course tomorrow for the Pseudomonas and hopefully we nipped it in the bud.  I'm crossing my fingers he is active on the transplant list after their transplant meeting tomorrow morning.

Lovenox injections leave nasty bruises... this is just one leg... the other one is worse.

I got a call from Juan at the RMH and they finally had a room available.  I ran over while Owen napped and did my orientation.  The entire house is beautiful!  The storage space is sparce, but I will make it work.  I'm so grateful they have such a wonderful housing option within a mile of the hospital.  Owen wants lots of pictures so I promised him I'll get those tomorrow morning and show him the play/tech rooms.  He is thrilled to stay there for 3 months post Transplant.

Tomorrow is a new day. :)

Nausea Go Away

Today was a good day. Owen is still struggling with nausea and can't tolerate any food. He wanted chicken earlier today but almost puked when he smelled it. Tonight he puked up all his evening meds so I am waiting on pharmacy so I can redoes them. He did great for all his Lovenox injections and Toby inhaled treatments.  His PIV in his left arm was leaking (not infiltrating) and so we pulled it this morning.  Thankfully he has plenty of access for his meds. 

Owen got a two hour nap in and then Auntie Janesa came down to visit.  She got to hang while Owen had his weekly dressing changes which makes him WIG OUT and so we gave him a small dose of Ativan to help with the anxiety.  Now he is passed out.   

There was a family a few doors down that said goodbye to their little girl today.  Then another story, I'll share later that will send chills down your spine.  Please just pray for these amazing families that are saying goodbye to their little angels.  The Pediatric ICU can be an excruciating place to live.  Lots of love...

A Good Day

Today has been a better day! Owen had a good night sleep and woke up feeling a little more like himself.  He wouldn't eat or drink anything all day and his tummy is completely empty, aside from Teaspoons of tube feeds I give him throughout the day.  Tonight he asked for spicy chicken wings from KFC (random) and he wouldn't let me leave to go get them.  So we used DoorDash once again and he was thrilled to get his KFC delivery an hour later.  He ate a few bites of one chicken wing and was done, but it's better than nothing and he was excited to eat it.  He only took one tiny sip of his drink, but it was celebrated! 

We decided to try increasing his Milrinone dose this morning from .25 to .5 and he has been more lively today.  It may have just been coincidental.. either way, I'll take it.  He built legos, watched movies on his IPad (for the first time in 3 weeks) and took a short afternoon nap. 

His Lovenox injection sites are still bleeding like crazy, but it means his blood is thin and that means less risk of his stent occluding.  His room is still on contact precautions for the indefinite future due to this antibiotic resistant Pseudonomas Pneumonia (not all antibiotics, but resistant to some).

We are hanging in there and doing what we can to pass the time.   I met a mom waiting in line for the bathroom a few days ago and her son (totally healthy) was just diagnosed with a brain tumor.  Today she was in the hall and I just gave her a hug.   Her little guy was getting a head CT due to excessive brain bleeds post brain surgery.  My heart and prayers go out to them.  So many heartbreaking stories from parents that roam these halls.

Back home.. this little boy is having so much fun!  The teenagers all went to the mall today and Auntie Sussy took him to the indoor playplace.  He has never been because I am a germaphobe.  They took him to Bath and Body Works after playing to wash his hands with yummy antibacterial soaps.

Then my little fishy went swimming and he LOVES the pool!  I was supposed to be teaching him to swim this summer.  I'm glad they are having fun while we are apart.  Time will pass quickly and we will soon be swimming together again. 

Until Tomorrow... prayers for a quiet evening.