Tummy Issues

Today was not the best way to kick start our week.  Owen is still feeling so nauseated all the time and just not tolerating his tube feeds.  He isn't puking because I haven't pushed him to that point, but his tummy doesn't feel well and he doesn't want to do anything.  He won't eat a bite of food or even a sip of water.  We decided to start him back on his Dopamine to see if it helps.  I cut back his feeds to just a teaspoon or so an hour and we started him back on TPN.. he was already getting Lipids.  We may need to go back on Epi or even increase his Milrinone.  I hate to see him feeling so ick. 

We got some of the results back from the bronchoscopy and one of the antibiotics he was on, Meropenem, is resistant to his Pseudomonas. So we will continue to do the Tobramyacin inhaled antibiotics and we started Ceftazidime.  His chest xray report read "improvement" and that means we are headed in the right direction.  We should be done with all antibiotics by Fri or Sat this week and then (crossing fingers), they will bump him back to 1A on the transplant list.  Technically he should be listed as 1B (based on the new UNOS rules) but due to his fragile state and high risk for future cardiac arrest.. they will submit for an exception to keep him at 1A status.  UNOS recently set up new requirements for the different pediatric heart wait list priorities.  It really changed the priorities so these kiddos that are very critical and can't leave CVICU take priority over those that are more stable.

Owen doesn't like to see his own blood.  During rounds today he said "mom.. come now!"  There was a good amount of blood dripping down his leg and saturated his blankets.  I had given him his Lovenox injections just 45 min prior and he had a bandaid on (they never bleed, the bandaid is for Owen).  Apparently this time I got a vessel but he bled and bled... poor guy.  He was gagging on the smell of his blood and he kept telling the nurse.. 'more pressure, hold more pressure.'  Tonight we used the other leg and did a better job.  It's so hard to give his injections because he literally has zero fat on him. 

Tomorrow will be a new day and I hope he gets a good night rest. One of the lumens on his PICC line occluded last night so the nurses had to turn on all the lights and woke him up.  Then as soon as he went back to sleep they did it again to TPA the line so it was functioning again. Poor guy got restless sleep and the nurses called me at 1am when he woke up and just wanted mom.  He didn't nap today and so I am hoping for a restful nights sleep. 

Back home... Kam and Logi are busy busy.  Carson sent me a package with some clothes today since I only packed to be here two days, I've been doing laundry constantly.  He also said he threw in some mail since he had no idea what to do with it... I love reading mail so I'm stoked. 

Tomorrow is a new day..  Prayers that we get to the bottom of his tummy issues and find a balance of meds so he can perk up a little. 

Quiet Sunday

Today was a pretty uneventful, lazy afternoon.  We turned off the Dopamine today and he has done ok.  We turned off the oxygen, but his sats dropped into the 80s and hung out there for a little too long.  We had to put the cannula back on (thankfully he doesn't mind) and he is on .5 liter flow to keep his sats up.  Aside from that, he watched a lot of tv, we read a little and he took a long afternoon nap.  We are discovering his new normal and it means little to no energy.  He hasn't eating a thing really.  Today he wanted a strawberry for breakfast. Tonight he wanted CPK Pizza and the nurse introduced us to Door Dash!  I went online and ordered CPK Pizza, free delivery and a tip... they delivered his pizza right to the hospital.  AMAZING!  I'm in trouble when he actually does get an appetite and he doesn't like hospital food.  Not so sure knowing about Door Dash is going to be a good thing... then again he can eat anything he wants because he has earned it! 

 

That was our day.  Here is my view all day from my old creaking rocking chair in the corner.  we are keeping our spirits up and having as much fun as Owen can tolerate.  I am used to going 100 miles a minute and never sitting down.  Now I am mostly sitting in this small ICU room watching a monitor, counting down the hours, and taking care of Owen.  It's a good lesson in taking a step back, relaxing and focusing on the important things.

Tomorrow begins our fourth week in the CVICU... it's really crazy how fast time has flown by.  We miss our family so much.  Back home... Daddy, Kam and Logi are managing just fine.  They had dinner with my parents.  They are well fed.. that is for sure!

Until tomorrow...

A Video From Owen

Owen wanted to make a "Thank You" video today. He is still really breathy and hoarse... partly from the breathing tube and partly due to heart failure. Enjoy...

"Hey Everyone. Thanks for all the prayers and blessings you have given me the past three weeks that I've been in the hospital.. and that you are all saying have good dreams...and that you give me a few more so I can make it through this. Thank you guys... bye."

Sweetest. Boy. Ever. 

Today started off kinda rough.  He wouldn't eat a single thing or sit up in bed.  He felt kinda yuck and I am certain it's due to us stopping his Epi.  We need to see his new baseline and I sure hope this isn't it.  He finally sat up in bed around 4pm and wanted to eat.  He had two strawberry halves and a few pita chips and is back down watching TV some more.  The energy is not there and his little voice is so breathy when he talks.  Dr Rosenthal has been on this weekend so he came in and we chatted.  We'll watch and see but we may have to go back up on some of the cardiac meds (Epi, Dopamine dose) while we wait.  Time will tell.  Until tomorrow.