Tummy Troubles, Pikachu and Exploding Kittens

Another weekend is coming to a close. Where does the time go?  Time is just passing us by in here and I am in shock that August is half over.  It feels like May was a millenium ago when we first arrived in Palo Alto.

Owen's weight continues to drop since turning off the TPN/Lipids.  He's got a good amount of chub on him right now so I'm hoping they will give him a little time to build up to his full gtube feeds.  If not.. it's easy enough to start him back on TPN.  Owen had a double lumen PICC line so he has Milrinone running through one lumen and we almost capped the other.  I realized we'd have to push Heparin through the line to keep it clot free and then we wouldn't be able to draw his anticoagulant labs from it.  So we just keep it open and moving with some IV fluids.  It still draws beautifully and I don't want this little guy to get poked daily for labs.

We decreased the Milrinone from .4 to .25 and he hasn't been feeling so great.  I don't know if it's the wean or not, but he is more nauseated and tired.  I think we may just inch back up on it.  We will discuss at rounds today.  Again, it's a simple adjustment.  Zofran is the most amazing med when he is feeling so crummy and gives him pretty instant relief.  I have him up to 800ccs via gtube, so 70% of his daily goal.  We will get there.

I ran over to the hospital school on Friday and got Owen registered.  I sent over his IEP to Kevin and I'm excited to get Owen back to a routine.  School is good for him.  Kevin will come to his room as often as he can (maybe not daily until more volunteers start) and I have found some great homeschool options (thanks for all the advice)!

Owen has about 8 Pikachu now and is just waiting on one more to hopefully have enough candy to evolve into Raichu.  There is a daily craft in the playroom and we made Pikachu ears on Friday.

Uncle Rustyn was in town for work and Owen was so excited to see him.  He brought Exploding Kittens (the card game) and Owen loves it!  It is a super fun game.

Back home.. I talk to my kiddos via Facetime a billion times a day.  Carson took the kids to see Suicide Squad yesterday.  Logi slept thorugh the entire movie, which was the plan.  Owen has been counting down the months for the movie's release and can't wait to see it.  Hopefully soon....

Kam sent me this photo of Logi yesterday.  He loves to sit on the bottom stair and watch his music videos all day on the TV.  He is loving the Teen Beach Movie music videos and dances and sings along.

Tomorrow begins a new week.  Praying for some relief for Owen's tummy issues.  We will find his happy place soon.  The silver lining to August flying by is that my family will be here in just a couple weeks!!  Labor Day weekend can't come quick enough.