An Unofficial Timeline

Some of you are pretty new to this story, so I wanted to take the time to go back over exactly how we got where we are today. This is unofficial because while there are some things I do well as a mommy, keeping a detailed scrapbook is not one of them.

November 2, 2006 (about 10 a.m.) – Parker is born. He doesn’t take a breath right away but they get him going and his 5 minute apgar scores are normal. We immediately noticed that his cry was quiet and a little squeaky but they assured us that this is normal for a baby who needs a little work to get going. Ian goes home to bring Berkeley, Griffin and Granny to the hospital to meet their new baby. Later that evening (about 8 p.m.) I think that Parker looks a little dusky but I ignore it as I haven’t slept in about 30 hours and the room is pretty dark. Five minutes later, Parker turns purple and is clearly gasping for air. I call for the nurses and they take him away. Quickly, they tell me that he is stable but admitted to the nursery for the night. About 20 minutes later the doctor comes in the room to tell me that there is an ambulance and acute care transport team on the way from Sick Kids hospital to transport him to the NICU. They aren’t sure what is wrong but they know they can’t handle it there. After spending several hours with the transport team, he is taken off in the ambulance. They convinced us that following to the hospital was not in our best interests and that we could call as many times as we needed in the night.

November 3, 2006 – We got our first view of Sick Kids. Breathtaking. We had no idea this would be our home for the next nine weeks. Quickly, doctors and specialists were assessing Parker and asking us millions of questions. We learned almost immediately that Parker had bi-lateral vocal cord paralysis (BVCP). This meant that his vocal cords were flopping shut over his airway and he couldn’t breathe at all causing his oxygen levels do drop dangerously. BVCP on its own is quite rare. It is however a frequent symptom of several other things: surgical trauma, birthing trauma (forceps birth), malformations of the brain, anatomical abnormalities of the heart or esophogus, etc. Since trauma was not the problem here, the team set to work to see what else might be going on. Every nook and crannie of Parker’s little body was poked and prodded and tested over the next few weeks. Nothing. Except, those nasty and dangerous purple spells continued day in and day out.

Somewhere along the lines, Parker developed necrotizing enterocolitis so we had to take step back from things and let him get well again. At that point, we were starting to discuss with the doctors the idea of a tracheostomy. A trach would create a secure airway and by-pass the vocal cords.

November 28, 2006 – A tracheostomy tube is placed. Our little boy is officially a neck breather and what a beautiful sight it was! For many, trach day is bitter. For us, it was sweet. We left the hospital that evening knowing without a doubt that this was the right decision and that our baby was breathing easily for the first time in his short life.

Now that Parker is breathing easily he is vomiting and not pooping. It is determined that he has pyloric stenosis and requires a surgical opening between his stomach and large intestine.

December 5, 2006 – Back to the OR to fix the pyloric stenosis and place a permanent feeding tube in his tummy (G-Tube). Parker needed a feeding tube because he was aspirating. The vocal cords are your last line of defense against aspiration. Since Parker couldn’t control his cord movement, he couldn’t protect his lungs.

January 3, 2007 – Home at last. We were trained on trach care, stocked with loads of supplies, excited as could be and scared out of our minds.

Mid February, 2007 – Our first return to Sick Kids for a routine check up with Parker’s ENT, Dr. James. A routine scope of Parker’s cords revealed they were working! What a surprise. Just when we’d gotten used to life with the trach, now we would be getting rid of it. A feeding study was scheduled to re-evaluate Parker’s aspiration risk and from there a plan to remove the trach would be put in place.

March 5, 2007 – Feeding study day. Another welcome surprise ~ no aspiration. Parker is cleared for full oral feeding and a path to decannulation (the technical turn for removing the trach).

April 22, 2007 – Parker is admitted to Sick Kids and diagnosed with asthma. He stays six nights and we get to see all of our old favorite doctors and nurses.

May 3, 2007 – “D” day. Parker got over his asthma enough to attend his previously scheduled decannulation. We’d decided prior that he needed to have a sedated scope of his airway before they pulled out the trach. Unfortunately, the scope revealed that Parker’s trachea was collapsed as a result of the trach itself and he could not support his airway on his own. Still trached.

July 2007 – We travel to Cincinnati, Ohio to meet with Dr. Robin Cotton. Dr. Cotton is largely regarded as the pediatric airway “guru.” We are partially seeking a second opinion but mostly setting Parker up as a patient of Dr. Cotton because we don’t know when we will move home from Canada and how that time frame will correspond with Parker’s airway needs.

October 4, 2007 – Dr. James removes Parker’s adenoids and scopes him. His trachea is still collapsing (we were hopeful that with time the cartilage would firm up enough to support his airway). Dr. James advises that Parker will need a surgical reconstruction.

October 10, 2007 – Back to Cincinnati. Dr. Cotton concurs that a reconstruction is necessary but has concerns about the function of the vocal cords. He recommends that we wait 6 months for the surgery to give the cords a little more time.

Looking ahead:

April 1, 2008 – Parker and I will fly to Cincinnati for a voice clinic for a thorough examinatin of his vocal cord function.

April 10, 2008 – Parker will undergo a Laryngotrachealplasty (LTP). More details on how exactly this procedure takes place will come soon.

Please feel free to post specific questions about anything in the comments section.

2 Responses to “An Unofficial Timeline”

  1. 1 Suzanne February 8, 2008 at 1:35 pm

    I’ve corrected the dates. Late night blogging is not a good thing! If you want to go directly to the blog itself, just click on “Parker’s Place” at the top of the e-mail and there are links to more information about some of the terms, if you are interested. Just click on the highlighted text. -Suzanne

  2. 2 Jill February 8, 2008 at 1:54 pm

    Wow…what a year! Good luck in April Little Parker! We are all thinking about you! Love, The Milburns 🙂

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