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07-Apr-11 Well, I knew this day would finally come but I did not think it would come so soon and it is bittersweet.  Now that Cole is better and home, I have been officially fired as interim blog writer.  As of today this blog, Unkie's Blog, will not be continued. Cole will be maintaining his own blog from now on. 
22-Mar-11 Finally, Cole was back in McMaster this week for his weekly follow up and finally there is a light at the end of the tunnel.  Relieved parents were told by the doctors “if we were not looking for the chylothorax, we would not have seen it.”    Monday the feeding tube comes out and no more special formula. 
Maybe then he can just be a regular baby.
20-Mar-11 Last Sunday night I received a call from Terri that Cole had been talking to himself none stop for forty-five minutes.  We are taking that as a sign that he’s feeling better.  I went to investigate for myself and it turns out the Cole knows a lot more than he lets on and he often made more sense than his father.
???? till 20-Mar-11 A couple days after leaving Sick Kids,  Cole’s breathing took a turn for the worse and he was sent to McMaster Hospital.   He spent almost two weeks in McMaster being tormented by the doctors and nurses.  I mean that literally.  Aaron and Terri discovered after a few days that all of the doctors and all of the nurses involved in Cole’s health care were not reading from the same playbook.  Some wanted to feed him every four hours, some every eight. Some added painkillers, some did not (we all had flashbacks to the morphine withdrawal he suffered through in Sick Kids).  The snapping point was when one nurse said to my brother “he’s a little small for fifteen months old”, he was only six months old at the time.  By this time my parents had taken all they could take and they drove up from Florida (things were looking grim, we were not sure Cole was going to make it). One day Grandma and Grandpa watched The Wee Man as Aaron and Terri had a big meeting with all of the doctors and all of the nurses.  Long story short, my sister-in-law promised all of the doctors and nurses that they would have well written epithet’s on their shiny new headstones if they did not get their act together.  Needless to say the next day every, and I mean EVERY, thing the staff did was run by Aaron and/or Terri and when Aaron or Terri called, the staff jumped (I saw it, I was impressed, remind me not to cross my sister-in-law when she is in ‘mom’ mode).  Magically, two days later and with everyone reading out of the same playbook Cole became better and better. He was finally sent packing on March 3rd. 
A home checkup a week later revealed that Cole was in worse shape than when he left McMaster, the fluid in/around his lungs may have been worsening and his breathing more difficult.  Aaron had to drive to Hamilton last week and pick a portable vital sign meter so that Cole could be monitored at home for 24hrs then the device returned. As I have said before the whatever-it-is  that the doctor nicked during the initial heart surgery  that is causing the chylothorax (the fluid to build in his lungs) is what is causing his breathing difficulties. The cure is a particularly rotten smelling baby formula that has to be tube fed to “The Dude” .  A few days after returning the portable vital sign monitor, and as sad as it is to write, as luck would have it, it would appear that a huge part of his problem was gas.  The doctors have doubled to quadrupled his gas medication and he is much happier.  The nasty formula they have to feed him that is “supposed to” fix the hole takes an hour to de-foam before they can feed it to him.  It is quite gassy itself. Little brother got the bright idea of adding the gas medicine to the formula, it now it takes 10 minutes for it to settle down then into Cole it goes.   When the gas medication kicks in the poor kid sounds like a twelve piece brass band but he is a lot happier when he is done.
02-Feb-11 till ??? As Cole's uncle, I sit here in behind the keyboard wondering how to start this update.  All of the letters I need to express what is going on are in front of me beneath my fingers. However the words I need are beyond my grasp.  So, I will just starting typing and let words fall as they may.  The news is not that bad.  How difficult can this be? 

From what I have read it appears that fifty percent of all children born with Down Syndrome also have heart problems such as holes.  Cole is one of the fifty percent. We have known since before he was borrn that the doctors wanted to operate on his heart when he was between three and six months old.  As fate would have it "Dude" was scheduled for surgery in Toronto's Sick Kids Hospital on 02-Feb-11.  Five months to the day of his birth. 

The following updates are pieced together from text messages and what I remember of Skype and cell phone calls so they might be little one sided.   I'll have the dates right but the order of the facts of those dates are as trustworthy as my memory permits.

  • Aaron, Terri, Bonnie (Terri's mom) and The Wee Man headed for Toronto in the afternoon in order to beat "the storm of the century" that was supposed to wreak havoc the next day. 
  • 7 am.  Cole is taken and prepared for surgery. 
  • For the next seven hours there was nothing.  No update. No word.  No texts. No phone calls.  Not even smoke signals.
  •  2 pm comes around and I get a text message from Aaron.  "It went 'ok' left valve is not opening as much as it should.  Some blood in his lungs and heart rate is slower than it should be." 
  • Doctors give the standard "worst case scenario" as they do that if his heart does not start to play nicely they may have to explore for the issue or install a pace maker.
  • Later that night I host a 'high-tech' conference call between Aaron & Terri on speakerphone on my cell phone and my Mom & Dad on speakerphone on Aaron's landline. 
    • We are told that Cole's colour is improved, he has gone from a not so pleasant grey to pink.  The word "marbling" was actually used in the conversion.
    • He is in infant ICU along with two other "roomies".
    • He has a dedicated nurse, breathing tube, external pace maker and enough wires and tubes running in and out of him that he looks a lone meatball in a bed of spaghetti.
    • He is "coming around"
    • He has a fever (post operative)
    • Heartbeat isn't quite what it should be
    • He's swollen up (as you might expect might happen when you have someone routing around inside you for seven hours).
  • 9:30 am brought this message from Aaron, "Blood pressure is still a little low. Temperature is high. He's a little more awake today. They are playing around with things to get him off stuff as soon as they can."
  • 1 pm - Cole is getting cranky so they had to sedate him a little more.  Apparently according to Cole, Cole was ready to go home as he was making efforts to unplug himself from his host of wires and tubes.
  • 2pm - Doctor's prescribe ice and epinephrine so temperature and blood pressure are getting better.  Going to take him off of both and see how he does on his own.
  • 3:30pm - Another text from Aaron, "Has a bag of ice on his head but temperature is normal.  Breathing on his own (tube still in him though) External pacemaker is on standby.  He is doing all of the work himself. [note: he initiates his breathing but the tube is the passage for the air]
  • 8 pm - From Aaron, " His blood pressure keeps on dropping. His heart squeezes good but does not fully relax.  If it does not stay sorted out the might have to open his incision to give his heart some more room.  Once the swelling is gone they'll close him back up.
  • From what I have been able to piece together it appears that things are going to be left up to Cole for the night.  The Doctors will see how he does during the night before they make any decision on opening incisions or anything like that.  I am not going to toot Cole's horn and I hate cliché's. It is clear that The Wee Man is fighting.  Stubbornness is so stubborn his family (part of his family at least, we know whom we are) that it refuses to run. I am glad to see that the next generation has inherited it and has learned at young age how to use it. Keep it up Dude.
  • Today started off promising with a text from "Little Brother" that read - Nothing too new.  On antibiotics as he has a fever.  No opening yet. [I believe that it was a reference to the possibility of re-opening Cole's chest as mentioned yesterday.]
  • 4 pm however brought a different story.  I'll paraphrase the text messages "They are going to open him up to give his heast more more room so his blood pressure will go up.  It makes sense.  Right now they are giving his fluids to keep the blood pressure up. The down side is that the fluid squeezes the heart and it can't relax.  When they open him up there will be less pressure on his heart therefore they will give him less fluids.  This is not uncommon.  Cole has a thick heart".
  • I found out a bit later from a less than calm, cool and collected Grandmother ( out of respect to her I won't mention her name but Aaron and I called Mom) that there is a little more to the procedure than merely opening his incision.  It would seem that they have to also re-open his chest.
  • The Wee Man has certainly earned the right to be grumpy for the next couple of years.  At least.
  • 10 pm - Cole's chest is open [has been for a bit now] and all of his numbers are improving
    • the are weaning him off of epinephrine , etc..
    • he is still doing OK
    • starting to pee off fluids on his own as well
  • Went to Sick Kid's Hospital to check on the Wee man himself
  • He looks great...
  • He has a catheter and has emptied out over one liter of fluid in 24 hours.  I'll put that into perspective.  He weighed 15lbs going into the surgery. If the human body is 80% water that would make him 12 lbs of water.  A liter of water weighs about 2.2lbs. So he has lost about 14% of his total body weight ( or 18% of his water weight).
  • His eyes are a little swollen (because of the swollen eyes he now looks like he has Down Syndrome)
  • I helped the nurse put him on his side.  Though sedated he became FURIOUS! Daddy could not watch his baby get upset. I offered Cole a finger to grab hold of and he applied his typical 'death grip'.  He would not let go so at one point the nurse had to walk around me to finish rewiring him.  Once on his side and wired up he quieted down.
  • It's hard to describe what it like to see "Dude" wired up.  He has three hoses in his nose, a half a dozen electrodes hanging out of him (for the external pace maker, more on that next), lines in both arms and a bag of ice on his head.  I cannot image why he gets grumpy when they wake him up.
  • The external pacemaker - - - - is on a shelf collecting dust. 
  • I had to chuckle at one point.  After the nurse rolled Cole over she used a bubblegum flavoured (so I am told) swab to clean up inside his  mouth and to absorb the excess he was drooling out.  Apparently it was a nicely flavoured.  There a sedated Cole lay.  Asleep enough that wires and tubes inserted into him would not bother him but not so asleep as to stop his tongue from popping out of his mouth looking for the bubblegum flavoured swab like a hungry hippo swallowing little white balls.
  • Nothing much to report for an update today
  • Lost another pound of fluid
  • Now easier to for Cole to open his eyes
  • Not a very happy camper today.  Took three different drugs to sedate Cole.
  • Same old same old
  • Shuffled around the room like a jar of candy at the old folks home
  • Got a picture of Terri holding the Wee Man both looked better than when seen on Saturday
  • Special "shout out" to Cole's Aunt Shannon whom under went her own baby related surgery today.  Get Well soon Aunt Shannon.
  • Got the boot from the Critical Care Unit
  • Little bit of discomfort - they removed his breathing tube  :)     
    • and his morphine    :(
  • Developed a case of chylothorax. (Long story short there is fluid on his chest.  Hopefully it can be treated but treatment means more time on the feeding tube potentially followed by six weeks of no-fat diet.)
  • Not impressed with someone at Sick Kids.  The Wee Man spent the night screaming and shaking.  Later in the morning Mommy realized that the nurses cut his morphine cold turkey.  Instead of weaning him off, he spent the night going through withdrawal.  So for those of you keep tracking that is one heart surgery, one chest re-opening, one case of chylothorax, one post surgical fever and a night of the D.Ts.  It sounds like Unkie may have to have a discussion with whatever is left of one particular nurse, or Doctor, whatever the case may be.
  • After they put The Dude back on the junk he calmed down and napped.
  • Rented a car and took The Dude's Grandma and his posse downtown Sick Kids.
  • Looked for nurse with freshly torn off head and did not find her, or him (see above).  Probably a good thing.
  • The Wee Man looked OK.  Almost all of the do-dads and thingys were unplugged from him.  However, he was sporting a couple of new "drains" to drain stuff that was leaking into his chest. 
  • Poor wee guy looked like a pin cushion. Holes in the feet, holes in the wrists, holes in the chest.  What a mess.
  • Daddy gave us the biggest and best laugh we have had in a while.  You can ask him what it was about.  I cannot say much but I can almost guarantee that it will be one of those things that we will be teasing him about for the rest of his life....
  • Interesting note: if the PTB (Powers That Be) want to know of more instances of wee ones being taken off of morphine and going cold turkey all they need to do is ask the girl that works in the Subway sandwich shop.  Cole was the third wee one that she had heard of going through what he did that week..  Isn't that special?
  • The picture above is pretty much the give away for today's news.  The Dude is home. (that black lump in the background is Cole's furry four legged sister mentioned below).
  • Cole is still on the feeding tube and is being fed the food for the chylothorax.  Now I have to tell you, and pardon my French, that 'food' is the worst smelling sh*t to which God ever gave breath.   It kind of smells like liquid chalk, cold oatmeal, overheated radiator fluid and burned hair.  I'll take my diabetic diet over that stuff any day.  The Dude has forty some-odd more days of that stuff to go.  If he survives that stuff he will be able to drink Buckley's mixture like Kool-Aid.
  • Cole was re-hospitalized at McMaster as he was having problems breathing.
  • X-rays have shown a build up of fluid around Cole's lungs.  Too much fluid....lungs cannot expand fully....
  • The have narrowed down the cause to three possibilities chylothorax, virus or problems with the ticker
  • No real changing in condition over the last couple days, breathing became a bit easier as the Wee Man stopped sweating over the weekend
  • Grandma and Grumpy drive up from Florida
  • Slight improvement in condition today
  • The doctors are leaning more towards the cause of a virus rather than chylothorax or heart problems
  • McMaster wants to send Cole to Grand River.  Everyone is protesting (even his own doctor at McMaster). Between you and I, Grand River would screw up the lord's prayer if they knew it. Being sent to Grand River does not give one a case of the 'warm fuzzies'.
  • I don't know how to put this update into words without lacing it with colourful expletives. Today climaxed in a meeting between Aaron, Terri all of Doctor's and all of the nurses.  Long story short they were screwing up multiple things multiple ways and Aaron and Terri couldn't get a consistent story or guidance from any of the alleged health care professionals. I don't recall exactly what they were screwing up but it was stuff like dosages, feedings, what to feed, how much...you know, things that alleged health care professionals should have a clue about.
  • Aaron and Terri  have been promised they will be told of everything that is being done, when and why
  • Guess what?  Give a guy his right medication, right food and right time and right amounts and Cole bounced right back. 
  • Still has slight o2 problem...his blood oxygen drops a little low at times
  • Pooping is a little  painful.  The little guy lets out a hell of scream, turns purple, then poops. It is heartbreaking to see.
  • Coughing also causes a lot of pain. Grown ups are given a pillow to hug as hard as they can cough post hear surgery, the wee man has nothing. So, when he cough we just squeeze his chest a little and he seems to come out of the pain rather quickly
  • Went down to Hamilton to check on The Wee Man myself.
  • He looks goods
  • He was flailing his arms and legs
  • He was giggling (man that was a sound for sore ears)
  • He was passed around and held by everyone and he didn't seem in mind at all
  • Mommy and Daddy both look they they could nap till mid November
  • He's a bit of an odd baby.  We'd look over at him from time to time and there he'd be, in his favourite position.  Legs up in the air and wide open airing out his diaper.
  • Grandma and Grumpy are heading back to FLA
  • Got an update from Aaron:
    • Finally just talked to a doctor that seemed competent.  They are taking Cole off the the 24 hour monitoring as it just worries people for no reason so they will be physically spot checking vitals every four hours.
    • Checking thyroid and blood to see if they can figure out the pooping issue
    • Take an X-ray tomorrow to see what is up with his lungs (there has been fluid passing back and forth between the lungs since he entered McMaster)