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Monday, December 6, 2010

Mikey Update 12/6/10

Mikey went in for surgery at 7:30 am.  The surgeon started his part at 9:00.  He was on bypass at 9:30 and off at 10:00.  He was done at 10:30.  The surgery went very well without complications or surprises.  The respirator he was on was in his nose instead of his mouth this time.  It looks a lot less intimidating that way.  Mikey had a harder time coming off the vent this time, but the anesthesiologist told us he'd really loaded him up on drugs, so I'm sure that slowed him down.  He got off the vent at 5:30, which was only a couple of hours longer than last time.  He also had a harder time getting off oxygen this time, but not too much harder.

That evening, Mikey was doing great on just Tylenol and the equivalent of Ibuprofen, which is amazing.  Last time he needed Morphine around the clock to get through the first day and night.  As the night went on, however, we observed the anesthesiologist's magic wearing off.  Then he had a coughing fit, poor thing.  We gave him morphine, which should have knocked him out, and it barely made a difference.  We doubled the morphine and put him on a sedative.  He barely slept 30-60 minutes at a time before waking up crying in pain.  That first night was far harder than last time.

At rounds, we decided to give him water to see if he might be ready to start eating.  We waited through the night because he was in so much pain.  We finally got a little sleep in the wee hours Thursday morning, so we started water mid morning, which he took with no ill effect.  Over the course of the morning, he had six ounces of water and 4.5 ounces of breast milk.  We cut him off because we didn't want him to get sick.  Since he'd been so long without something to suck on (he won't take a pacifier), he was happy to suck on an empty bottle until he fell asleep cuddling the bottle.

I finally got to hold him Thursday afternoon.  He was down to just his chest tube and oxygen (and all the standard monitors).  That evening, he smiled a little while I played with him, and I discovered he'd cut a tooth that morning, which probably explained some of his discomfort (he doesn't handle teething well).  That night, we knew we'd have to give him some formula.  I was heartbroken because I'd only wanted him to have my liquid gold for the first couple of days, and I didn't even have enough to make it one day.

That night we had a scare.  We saw milky fluid coming from his chest tube, which, as we saw during rounds, turned into thick, yellowish white gunk without a hint of red.  Everyone knew he had chylothorax, a really scary complication where, to oversimplify it, fat deposits build up in the chest cavity and keep the lungs from expanding.  Here's a really scary story about the potential effects of this complication (most cases aren't this bad, though): http://www.llli.org/llleaderweb/LV/LVAprMay03p27.html.  Thankfully, Mikey's respiration was good, so we knew it wasn't that bad, though the chest tube helps to drain some of it.  They started the breathing treatments and sent the fluid off for testing.  I got right to praying that he didn't have it.  Even though there supposedly can be other explanations for milk fluid (none of which anyone could name for me), there is not explanation for the amount we saw during rounds.  Much to everyone's surprise, the test came back negative.  The doctor and nurse practitioner at rounds Friday morning saw the notes and freaked out (their eyes bugged out of their heads...kinda funny in retrospect).  Thankfully I was there to tell them the test was negative.  Nobody would - or could? - give me any other reason for what we saw, and nobody was even willing to talk about it.  I know that God healed him, and if anyone thinks differently, keep it to yourself.

At that point, his respirations had been great. He was receiving the breathing treatments (air forced into his lungs) originally to prevent complications from the scary complication, but which also serve to evict mucus from his airways since he was unwilling to cough.  They made his sats go from great to awesome.

Thursday night, I tickled him, and he laughed and smiled while I played full-body peekaboo with the privacy curtain.  He even blew Nonni (Ellen) a kiss.  Friday morning, I realized he now has a whole collection of animals from the hospital. He got a Beanie Baby chipmunk from Phoenix Children's Hospital when he had his testing on the 19th, a Starbucks lamb from Mended Little Hearts (the support organization for families of heart kids), a St. Jude bear from the Child Life (activity program at St. Joe's) and a Beanie Baby owl from the nurse when she found out he loves owls. Later, he would receive a Beanie Baby snowman from another mom in the unit.  Sheesh.

Friday afternoon he ate some baby food.  He got too tired, though, and had to get back in bed.  His poor little head just completely fell over in the high chair.  We planned on pushing him around in a car later, and we got our wish.  Even though he was tired and uncomfortable, he had a good time.  He inspired everyone as he rolled around the floor over and over.  We had to take a break so he could have his chest tube removed Friday late afternoon.  I was excited, since that's the point at which he turned around last time.  After it was out, he took a short nap.  Then... he sat up by himself! He played and clapped and pointed and talked. Then... he pulled himself up! Then he tried to climb over the crib rail! You wouldn't know he'd just had any surgery, let alone open-heart surgery, if it weren't for the incision! Well, and the leads and the oxygen line and the pulse/ox and the BP cuff...

Mikey's saturation was still dropping while he slept, so weaning his oxygen was a slow process.  Last time it took two or three tries to wean his oxygen.  It took three or four this time.  He just wouldn't take deep breaths consistently, not that I can blame him.

Saturday morning, Mikey was a new boy.  He was dancing to the cheesy 60s infomercial music that the Elmo microwave put out.  (We were able to borrow toys from Child Life.)  I tried to get him down for a nap, but he just looked at me, so I blew him a kiss, and he blew me a silent kiss back.  It was so sweet.

Saturday afternoon, we gave Mikey some cereal.  He had cheerios for the first time, and Honey Nut at that.  He loved them.  He ate some, but mostly he licked them and took itty bitty mouse bites out of them.  He's such a weirdo.  Later, I gave him grapes, which he proceeded to mash between his hands.  I thought he was clapping.  Silly me.  Our nurse on Saturday and Sunday said she loves to wean oxygen.  Sure enough, she had him off oxygen Saturday afternoon.  He did great Saturday night, and Sunday morning we were told, in no uncertain terms, that he would be going home.  There had been some concern about the fact that he wasn't eating enough, but he starting eating a little more, and they figured he'd pick up his pace at home (and he has...he just ate over half a banana at one time!).  They were also concerned about his lack of movement down below, if you catch my drift.  That, took, fixed itself, resulting in a surprise baby shower (literally) a few minutes ago.  I don't think he appreciated the added level of effort involved in receiving a shower over a bath.

Saturday afternoon, evening, night and Sunday morning, we must have done a thousand laps in a little red card we borrowed from Child Life.  He made everyone smile.  He inspired everyone, even the doctors.  He wouldn't get out of the car except to eat, so I had to call in reinforcements so I could pack our room.

We've been home for exactly 24 hours, and Mikey's doing great.  You wouldn't know he had surgery if it weren't for the incision.  Other than insisting on sleeping in my bed last night, that is.  Daddy got the couch.

Oh, and Mikey's first order of business when we got home?  To go around the room and kiss all the stuffed animals.

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