Thursday, October 30, 2014

Trachs 101

Anytime someone new comes to visit Colin, I give them a quick lesson in trachs, whether they want to know or not.  I know that if I were them, I would be very curious about how it all works.  I honestly had no idea what a trach was before the doctors started using that word early on when they had trouble getting Colin off the ventilator.  We were hoping that with a little more time and treatment, we would be able to get Colin off of the vent.  But, unfortunately, after Colin was re-intubated after a failed extubation, Matt and I decided to go ahead with a tracheotomy.

Colin during his attempted extubation

After being re-intubated

This decision wasn't easy, but Colin would self-extubate often, and our biggest fear was that he would do permanent damage to his airway and/or his vocal chords.  Also with the trach we could bring Colin home even while he was ventilated (this plan changed when we transferred to Columbus).  During rounds the day after he was re-intubated, I advised the doctors of our decision and to go ahead and consult ENT.  Not even an hour later, Trichelle, my favorite nurse practitioner, came and told me that ENT had an opening later on that day.  I called Matt and we both agreed to get it done, why delay the inevitable, and also, the hospitals best ENT doc would be doing the surgery (God's handiwork).  So, in comes Jan, trach teacher extraordinaire at Children's Hospital of UPMC Pittsburgh, to educate me about what was going to happen to my son.  I was in a bit of a haze when she was talking, so a lot of what she said went in one ear and out the other, but I got the important info.  Later on that day, Colin was taken down for surgery and our lives changed drastically.

Heading down for surgery (that's Trichelle with him)

During the surgery, they first checked out Colin's airway and then proceeded to cut a hole in his trachea and inserted a tube that the ventilator hooks right up to.  This is a trach (along with a couple of other accessories I will explain in a bit):

Colin's trach is a 3.5 Neo Shiley, 3.5 is the diameter of the tube and Shiley is the brand (the one in the picture is a 3.0, which is a downsize in case we have trouble getting the 3.5 into his stoma).  This gets changed once a month, unless there is an emergency such as a mucous plug, which is just a big booger that builds up over time (we've only had one emergency trach change).  We change the ties every other day unless they are gross, and these keep the trach from falling out.  I remember first getting trained and thinking how impossible it seemed and how much work it was.  Now, I could change a trach in the middle of the night, half asleep, and probably with one hand tied behind my back (not to sound braggy).  Colin makes it really easy too, he is such a good boy during trach changes.  The other accessories in the picture are a Passy Muir Valve (PMV for short) and an oxygen adapter.  Let me just say that the PMV is my favorite invention of all time.  Without it, Colin would not make any sound.  The trach is placed below the vocal chords, therefore, no air passes over them when the trach is in place.  The PMV is a one-way valve.  He breathes in through the trach with the PMV, but the valve then closes when he breaths out to allow the air to pass over the vocal chords and come out of his mouth.  This way, Colin can make all the noise that he wants.  We didn't hear him make noise for a long time, about three months, so this little piece was a God-send.

We very much look forward to the day that Colin is decannulated (taking the trach out).  We're hoping that it could be as early as March 2015.  It is an unwritten rule that trachs are not taken out during cold and flu season.  We could fight to get it out sooner, but if Colin were to get really sick and, for example, needed CPAP, we could treat him at home instead of having to be hospitalized.  So, we will be patient and do our best to keep the little man healthy during the winter months.  I will do more educating in the future, but for now I will leave you with Colin opening his Halloween present from Grammy from this morning:

Tuesday, October 21, 2014

Latest Tests

First of all, how stinkin' cute is Colin in a hospital gown?

Those socks kill me, and lasted about 2.5 seconds.  So, we arrived at the hospital around 7:45am for a day full of tests.  I can't give you all the exact medical lingo for what he had done, but he had an MRI, a bronchoscopy, and pulmonary got in there too.  The MRI was done because his head is big, like, off the charts big, corrected and actual age.  He had an ultrasound done on his head a month or so ago and it showed some extra fluid in places, so the doc wanted an MRI. The MRI showed that there is some mild brain volume loss.  As soon as the doctor told me that, it sounded really scary, but she said the only problem that he MIGHT have in the future is with his gross motor skills.  Colin just might not be very coordinated.  I am just happy to have not heard the words hydrocephalus or tumor, which were the scary words that the neurologist used at our appointment a few weeks ago (yes, Colin has a LOT of appointments).  So, as much as I wanted there to be nothing wrong, we were happy that it was nothing major.  The bronch showed that his airway looks mostly good, a little narrow, and there is a slight possibility that he would need a surgery when they went to take the trach out, but we're hoping as he grows, the problem will fix itself.  Pulmonary said his lungs look good, except for some mild malacia in his right lung, which will also get better with time and nutrition (the two words I heard all the time at the beginning of this journey).  All in all, we were pleased with the results of the tests.  Unfortunately, the ENT doctor told us his trach won't come out before the winter, so we're probably looking at March.  The good news is, he has been rocking room air during the day so we will start capping his trach, which means he will have to breath in and out of his mouth and nose instead of through the trach.  These are all steps to getting the trach out, and we can't wait for that day, he will be so much safer.  That is all for now, I'll leave you with another picture of Colin in his gown, he was completely mesmerized by his IV and the board.

Thursday, October 9, 2014

The Kendall Normal

Well, here I go. I've been back and forth about wanting to start a blog.  I've been reading several blogs of some amazing women and I feel like I can't even compete with their level of wisdom or rhetoric.  However, I did want to share my story, along with my joys and even my frustrations.  As I sit here and type, there is a mountain of boxes stacked by the front door that are filled with supplies for my 9 month old miracle baby.  Colin spent his first 201 days of his life in the Neonatal Intensive Care Unit at three different hospitals.  He has a trach, a g-tube, and a killer smile.  It is a very long story and I will get to that, but for my first post I wanted to explain the name of the blog, The Kendall Normal.  I can't tell you how many times I heard the words, "your new normal."  My normal for 7 months was driving to a hospital, talking to doctors and nurses, and helping to care for my son while he was lying in a hospital bed.  Now my new normal is caring for my son at home, acting not only (and most importantly) as his mom but also his nurse, making sure his oxygen saturations are safe, giving him his meds, and keeping him healthy.  That is our normal, for the time being.  I'll be honest, there are times that I wish our normal was a little different, a little easier, but I thank God every day for this little boy and all that he brings to our lives.  We've learned a lot over these past 11 months, not just about bronchopulmonary dysplasia, neonatal care, and tracheotomies, but about patience, humility, and grace.  I'm sure we have a lot more to learn and look forward to it.  For now, I better go put away and organize Colin's supplies, just another part of my new normal.