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Saturday, May 22, 2010

Mikey Update 5/22/10

Mikey went into surgery at 8:30am on Tuesday.  He was done by 9:30.  The surgeon said everything went perfectly, and everything was exactly as they expected.  (They told us one new piece of information that could potentially affect Mikey in the future.  A branch off the trachea (called a "bronchus") comes off the trachea a little higher than normal.  If surgery is being done in the area, he has a higher chance of experiencing a partial collapse of that lung.  It's nothing to be concerned about outside the operating room, however.  They had seen this anomaly in the 3D image of his CT scan and confirmed it during surgery, but they'd never mentioned it to us before.)  They tried to extubate him at the end of the surgery, but he had a few small issues, so they reintubated him.  Aside from a chest tube, which is frequently required, everything was perfect.

I had been well-prepped for what I'd see after surgery (thank you, Sarah!), so I wasn't shocked by his appearance.  In fact, he looked far better than I'd anticipated.  The tube was small and to the side, and he had great color.  The only thing that surprised me was the pulse/ox meter on his forehead.  It looked a little abducted-by-aliens to me.  :o)

They wanted him to tell us when he was ready to be extubated, and boy did he ever!  At 2pm, like flipping a switch, he suddenly started breathing - or gasping, really - over the vent and trying to swallow the tube.  Thankfully the alarms were all madly going off because I didn't really want to leave him to go find a nurse to tell her he was *very subtly* telling us he was ready.  They tried to put off pulling the tube, but thankfully I put up enough of a fight that they called in the extubation team.  (I have no idea why they'd rather attempt to sedate him with morphine and therefore REALLY delay the process than just get it out.)  The respiratory therapist and crew arrived promptly and got the tube out so fast I totally missed it.  He was much happier after that, however a little hoarse.

He needed morphine for the pain for the first day and night, but he only had it for a couple of procedures after that (an x-ray and the removal of his chest tube).  He's doing well on a regimen of Tylenol with codeine and ibuprofen, as long as we give it within a half hour of the minimum time between doses.  If we don't, he lets us know!

By Thursday he was acting like himself and ready to play.  He was still very sore, though, and didn't want to cough up the junk in his throat because it hurt his back, where the thoracotomy was.  Also, I'm sure the chest tube hurt, since he freaked anytime anyone went near it.  He was a completely different boy after the chest tube was out Thursday at 11am.  The nurse practitioner who removed it said older kids report pain for about an hour after the removal and nothing after that.  It took Mikey 5-10 minutes to act like he'd never had a chest tube.  He was laughing again!

Friday he had physical and occupational therapists come by for an evaluation.  That was playtime!  He had a blast rolling around on blankets on the floor with the two women.  They said they didn't see anything about the surgery that needed attention, but they still recommended a regimen of therapy sessions because of his neck and back issues.  The physical therapist wanted to make sure we follow through with our already-scheduled physical therapy (PT) that starts June 1st, and the occupational therapist wanted to add weekly occupational therapy (OT).  The speech pathologist came by later.  After we straightened out the reflux (which he does not have) versus aspiration (which he does) issue, she went about arguing with me about pacifiers and breastfeeding and scheduling the modified barium swallow (MBS) and whatnot.  In the end we were on the same page, and she realized we already do everything she wants us to do, we determined she is pro-breastfeeding, and we decided that the MBS will be the first week of June, and speech therapy (ST) will follow.  Thankfully, our PT office also does OT and ST.  Whew.

We were discharged yesterday (Friday) afternoon.  Mikey was actually happy to be in his carseat!  When we got home, he smiled bigger than I've ever seen.  The awareness of babies never ceases to amaze me.  We didn't let him really play until today, and he didn't want to quit.

We did have a bit of a situation today.  His chest tube site had been leaking more than it should, and when we went to change the dressing today, it spurted like a fountain.  Yesterday a call to the surgeon's office left us with directions to go to an ER if it got worse.  So that's what we did today.  We went to the hospital by our house.  They did a chest x-ray, put us in the first available room, and made us wait a year and a day in that room (well, curtain).  First the physician's assistant (PA) came in to tell me he saw the x-ray but didn't know what he was looking for; he didn't see anything.  I told him he was looking for a tension pneumothorax (because that's what the doctor in triage told me she was looking for on the x-ray). He said "Oh, good!  That wasn't there.  I thought I was going crazy!"  (Seriously?  Did this guy get his diploma in a back alley somewhere?)  Then they came in to tell us they couldn't treat us; we have to return to the hospital (across town) where the surgery was done.  They said the person who told us to go to any ER was "an idiot" and they only take care of well kids.  Yes, it made no sense.  They attempted to call the other hospital, and I called the surgeon's office to talk to whoever was on call.  The nurse practitioner (when she called back 5 minutes later) told me she'd received a page from the hospital, but they listed my number as the call-back number.  (Now who's the idiot, eh?)  It took some fighting, but after threatening to walk out or sign us out (against medical advice, as the PA pointed out) and convincing him that waiting for a call back was futile (and they need to try again), they finally agreed to page the nurse practitioner again.  The doctor came back in rather quickly and anxiously and asked if I had a number they could call to page the NP.  At this point, I was all but laughing at the general incompetence and gave her the number.  After another inexplicably-long wait, they came in and told me exactly what the NP had told me, and they insisted I wait for those instructions in writing before they'd discharge us.  Whatever... At this point, I had over three hours invested in this process.  (Incidentally, they did look at the site, and by this time it had stopped leaking.)  The NP suspected there had been a pocket of fluid at the site, and we opened the floodgates when we removed the dressing.  Since the leaking had stopped, we took the NP's advice and went home.  We haven't had a problem since.  I wish we'd called her this morning before going to the hospital!

Because I always end these novelas with a God-is-good statement, I have to share a short story here.  Tuesday or Wednesday, Mikey was really hurting, so I got really close and started saying, "Jesus take the pain away," over and over.  It only took a minute or two before he suddenly calmed down.  I thought that perhaps the words had been soothing, but it was highly suspicious.  Today, in triage, there was a man moaning in pain, thinking he was having a heart attack.  I started saying, inaudibly, "Jesus take his pain away," over and over.  After a couple of minutes, I stopped.  As quickly as I stopped, he stopped moaning.  There was no way he knew.  God IS good.  Maybe that's why He sent us to the ER this morning...

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