Update: Day After Surgery {2}

Yesterday was quite wild and full as you can imagine.  He had to be at Mott at 6:15am and they took him back to the operating room a little before 7:30.  They did initial stats when we arrived and then he got to hang out, play with trains and watch the Minion movie.  Mott has everything you could think of for their kiddos.

We talked with his anesthesia team and they gave him some loopy meds which makes him act like an adorable little drunk guy and they took him away with ease.  He was showing off his muscles and giggling and giving us hugs & kisses and told Josh he loved him.

We got to wait in a more private waiting room on another floor separate from the large waiting room and we had our own personal lady who would come and give us updates.  We we’re the only people in the waiting room all day while a trickle of other families would come and go.  We received frequent updates almost hourly which was insanely nice and helpful.  We talked with Dr. Bove, our surgeon, around 3ish and finally got to see Everett around 4:30.

Mott Children’s Hospital Fun Fact #1:  All the bathrooms…at least on the kids cardio floor…are rainbow.  Be still my rainbow loving heart.

Everett’s AV valve was a beast to fix.  It’s still leaking some, but they weren’t expecting to get it completely repaired.  Dr. Bove does think he was able to fix it enough to make him a candidate for the Fontan procedure he needs next.  We still have to wait to see where everything levels off, but it was nice to hear him say he felt good about his work.

He was also able to suture his diaphragm down in the same surgery.  Everett’s right lung still has some collapsed areas, but they say that’s normal since it had been so compressed.  He has been struggling with bleeding off and on since he came out of surgery.  His bleeding did decrease enough, coupled with a good chest x-ray, that his team felt comfortable enough to extubate him last night.

His stats have been low and then yo-yo, but finally started to decline consistently even on canal O2, so they had to switch him over to O2 with a CPAP machine.  His arms and legs are restrained because he was trying to pull everything out with his hands and feet.  Boy is feisty, smart and flexible 🙂  He’s really uncomfortable, in pain and agitated which is absolutely understandable.  He is opening his eyes and keeps saying he’s stuck, “ouch”, that he wants to go home and wants his water.  Basically he’s super super pitiful and I want to scoop him up and see those bright eyes and smile again desperately.

Everett insisted on taking his rainbow donkey piñata into the OR.  “Fiesta” or “Donkey” got his very own medical bracelet as well.  Josh stayed by his bedside through the night and I actually did get some sleep in our Ronald McDonald room which was really nice.  I came in this morning and Josh is off sleeping now.  They just did rounds and are staring their new plan…changing things, fixing meds, giving him plasma, putting him on a new high flow O2 machine, etc.  Now we’re just praying we see improvements soon.

Everett Kelley Hospital Fun Fact #1: He had two of his very own personal nurses last night and they said that when he would dose off to sleep he would talk in Chinese in his sleep.  The sweetest.  Also during his pre-op day Tuesday one of the doctors asked him to count to ten and he did so in Chinese.  I love love love hearing him speak in Chinese.

The first 24 hours are huge so we’re thankful those are behind us now.  We know he’s not out of the woods yet and it’s crazy hearing nurses and doctors say things like, “We see a lot of really complex hearts and it’s rare we get confused, but your boy’s heart…wow.”  I watched as doctors and nurses gathered around for one of the surgeons who was in Everett’s surgery yesterday draw a picture and try to explain to them his so very complex anatomy.  One guy’s response was just, “Shit.”  I also heard “crazy ass murmur.”  Both made me chuckle pretty hard.

I do really feel like we are in the absolute best place we could be.  We have felt so loved and taken care of.  Dr. Bove is insanely wonderful and I really feel like he was the person for this job.  The best and most skilled for this job.  Over and over I hear, “He’s the best in the world.” or “He is THE man.”  All which makes us just feel better and better about being here.  We’ll never be able to say how grateful we are he saw something in Everett that made him think he could save his life.

So today we’re just praying we see improvements and can get him to a good comfortable place.  Thank you a thousand times over for praying for Everett and our family.  Thank you for the kind and encouraging messages and emails and comments and texts we received all day long.  I’m still trying to make my way through them.  We geuniuely felt the prayers, love and support.  We will never be able to say thank you enough.

I’m really going to try and keep everyone updated, but for quicker updates you can check out my Facebook and Instagram.