Cortlan's surgery update

What a whirlwind the past week has been!  From getting observed by my principal on Friday to prepping for a sub to cover my classes for six periods; from trying to figure out what to pack for a weekend away that included a 77.7 mile relay race in who-knows-what weather to driving to the race, running the race, and driving home; from stocking the house with popsicles and applesauce to waiting for hours to be called back to surgery...I have been busy.  And a little stressed.  But here I sit, at 10pm, in room 718B while Cortlan sleeps peacefully.

I hear a baby crying not far outside our room.  I have been told that we may still get a roommate tonight.  I expect that the nurse will be arriving around midnight to bring Cortlan his next dose of Tylenol.  I don't expect to have a restful night's sleep.  But I am thankful.

Upon arriving at the hospital this morning at around 11am, we checked in and sat down to wait to be called to our next destination.  Shortly after, a woman and her son came in and sat nearby.  Her son looked to be about nine months old; he had on glasses; he had Down's syndrome.  I said, "Look at those awesome glasses!  What a cutie pie!"  And he truly, truly was absolutely adorable.

I talked to John a bit about whether Everly was going to be able to come to visit.  The woman told me that they are great with siblings here; she and her other two sons have spent quite a lot of time here.  In fact, her husband and she had tried to total up the number of hours and came to at least six solid months worth of hours.  The conversation led to the fact that this baby is her second special-needs child.  That one of his older brothers was born normal but at about 15 months old developed some problems and that they came to discover that he has a rare and incurable disease; he is four now.  That this little guy is actually 15 months old, not the 9 months as he looks, and that he is about to have his second open heart surgery.

I tried to hold it together as best as I could as we continued to talk.  She was a beautiful woman and smiled through our entire conversation.  She was calm and matter of fact and hopeful as she explained to me some details.  I had to turn away to wipe a tear at one point.  I was amazed and inspired by this mom, whose name I will never know.

As we waited for several hours more than anticipated before being called for surgery, I was astonished that Cortlan never once mentioned that he was hungry or thirsty.  It had been at least five hours since his last drink of water and his last food was almost 20 hours prior.  I was starving and had to sneak down to the cafeteria.  He calmly found things to do in the activity room - he watched TV for a bit, we played a game, he made a bracelet, and more.  The time didn't bother him in the least.

I kept wondering what had happened that got them so far behind schedule.  I prayed that everything was alright, knowing that somewhere in the hospital, a beautiful little boy with the cutest Baby Gap outfit was having open heart surgery.

We finally got called back.  Cortlan was given the option of walking or riding the bed back to the surgery room; he preferred to walk.  I immediately got changed into my snazzy white coveralls, cap and booties, and walked back with him.  He climbed up on the table and the anesthesiologist gave him some choices of where he wanted to go on his imaginary trip today.  He chose to go to space, and the anesthesiologist proceeded to  put on Cortlan's "astronaut mask" and tell him a great story about flying to space and about the planets.  I held his hand while he slowly drifted off to sleep.

In no time at all, we were told that the surgery had ended and that it had gone very well.  Soon enough, the doctor was with us, showing us pictures that were taken during the scopes and explaining how things had gone.

His trachea was narrow enough to warrant a smaller-than-typical breathing tube for the intubation, but not quite as narrow as in December.  His adenoids, which have always been expected to be large but have never actually been scoped, were blocking 80% of the nasal passage.  They are now gone.  His tonsils, which were visibly huge, were ranked on a scale of 0-4+ as a 3+ at the time of surgery.  They are now gone, too.  We anticipate the sleep apnea will be eliminated by the surgery and that his breathing and drainage and speech will all be markedly improved.

It is morning now, and we are waiting to hear when we can be discharged.  Cortlan ate a nice meal of mac and cheese, mashed potatoes, jello, and applesauce last night, and we watched Hotel Transylvania.  At midnight, he got some medicine to help with pain.  At 3am, we got a roommate who seems to have appendicitis.  At 4:30am, he got more pain medication.  At 6am, a doctor spoke to me, and at 7am, Cortlan woke for the day.

He is having some pain, but is tolerating it well.  We went to visit the playroom, where he made a sun catcher and fed the fish.

We are thankful to be under such great care in such an amazing facility.  We are thankful that it was only tonsils and adenoids that brought us in.  We have the adorable baby boy with the glasses on, and everyone else we have encountered here, in our thoughts and prayers.  We are headed home shortly.

Surgery is scheduled

I think I have spread the word about this to most people already, but in the interest of keeping up with my record keeping, here is the latest:

One week ago, John and I picked the kids up at school a touch early and we headed to Children's Hospital for Cortlan's follow-up appointment/surgical consult. We had never been there before (fortunately, we have had no need before now), but we had heard that it was pretty fantastic.  The rumors were, for the most part, true.  The check in process was very efficient.  They gave us a buzzer (like you sometimes get at restaurants) so that they could easily notify us when it was our turn to head back to see the doctor.  This was necessary because the waiting room was huge.  There were aquariums, televisions, different stations set up with electronic games and coloring, and there was even a section of docked and secure ipads with apps for the kids to play.  All of this was great - because as we were the last appointment of the day, we ended up waiting for quite a while.

Once were finally called back to see the doctor, we had even more wait time.  Fortunately, my kids like to draw and color, and I had paper and crayons with me.  They drew pictures, we sang songs, and we all started to go a little stir-crazy.  A physicians assistant came in for a check, and then finally we saw the doctor.

The doctor explained to us that Cortlan's sleep study was abnormal.  Specifically, he had an average of 2.7 "episodes" of sleep apnea per hour, which, as far as I can tell, means that his breathing stopped or drastically reduced for some amount of time each episode.  At times, his blood oxygen levels decreased to 86%, when it should be 97-98% for a child his age, as explained to us.  Despite the fact that it initially seems a little scary to think that he is essentially stopping breathing nearly three times per hour, this all puts him in the category of "mild" sleep apnea.  When compared to having episodes every couple of minutes, as some people do, 2.7 per hour does seem mild.  Still, it is more than enough to be considered a problem that needs to be taken care of.

Cortlan will be having surgery on April 23rd.  At that time, he will have both his tonsils and adenoids removed, as well as several other procedures, including a "soft" scope through his nose, a "hard" scope through his mouth that goes deeper and is more investigative than the ones he had in December, and a biopsy.  These things will be done to farther examine the causes of the apnea as well as the narrowing of his trachea that was discovered in December.  He will have the surgery done at Children's Hospital (as opposed to the surgery center) and will stay overnight for observation due to the slightly higher risk of his case.

I know that some of this sounds disconcerting at first, but we are very hopeful and optimistic about the outcome.  We aren't blowing this off, but we also are not making a big deal of it, either.  In fact, one of Cortlan's friends from school is having nearly the same procedure done one week after him - he had the same sleep study done with 2.9 episodes per hour.  The most frustrating part of it all has been the timeline and that we aren't done with this all yet.  But, two months will go quickly, and we are looking forward to having it behind us and for Cortlan to get some much needed relief.

Random Stuff

• It kind of stinks when you come to find that the people who you thought were older than you are actually the same age as you...and that you probably look "that old," too.  I suppose what is more important is how old I am on the inside, right?
• I had to take Everly to the doctor's office this morning.  Turns out that there is nothing wrong, but she was devastated when she found out that she couldn't get a shot...To the point that the doctor asked if she had her flu shot yet, in hopes that we could find some shot to give her. 
• Cortlan's sleep study came back abnormal.  We meet with the surgeon who recommended the study on Monday to go over it, but the preliminary results that I have received indicate sleep apnea and the surgery that he went in for in December is once again recommended.  We will know more on Monday.
• I am forced to wonder if there are any jobs that are low-stress these days.  I can tell you that teaching sure isn't one of them.
• Cortlan has been learning how to spell many words.  The latest:  b-u-t-t.  The funny thing is the look he got on his face the first time he spelled it for me, and that he has only spelled it and hasn't actually said it.  It could be worse.
• There is something about February that makes it seem like the longest month of the year.  And there is something about it that makes me yearn for the beach.  
• I am a big fan of dance parties in the kitchen while I am cooking.  And my kids laughing.

Cortlan's Sleep Study

Last night was Cortlan's sleep study.  When the second attempt at getting his tonsils out was cancelled, we were told to get a second opinion, which we did in December.  That doctor requested that we have a sleep study done to gather some more data that will ultimately help us determine the best course of action regarding his exceptionally large tonsils and exceptionally small trachea.

Cortlan was his typical self and, despite a little apprehension, focused his attention on the Ice Age movie that we were watching while the technician covered him with wires and sensors from head to toe.  They were collecting data for everything related to his sleep, from the motion of his legs to the amount of oxygen in his blood, as well as whatever they were able to collect from all of the wires glued to his head.  They had microphones and video cameras recording the night's events, as well.

The connection of the wires took quite a while:

They started with sensors on his legs, stomach, and chest.  Cortlan was enraptured by Ice Age.

Then they moved to his head, where they attached the sensors with horrible smelling glue.

They used compressed air to dry the glue.

Good thing it was a good movie.

I am pretty sure the thing in his nose measured carbon dioxide from his nose and mouth.  I was beside Cort in bed, watching the movie, the whole time he was getting all of these wires.  I wish I wasn't in this picture, though!

What wires?

Shortly after that last picture was taken, it was time for lights out.  I said my goodnights and goodbyes and was on my way.  John stayed the night with Cortlan:

Doesn't he look comfortable?

John said that Cortlan was asleep not long after I left and that he slept the entire night.  He moved around in his sleep so much that the technician had to come in and untangle him a few times.  The guy unhooked the wires from the monitors, untwisted them from around Cortlan, and then plugged them back in so quickly that Cort never woke up.

We will have a follow-up appointment in a couple of weeks to discuss the results and what happens next.  I will be sure to keep you posted. :)

Tonsillectomy, Round 2

Yesterday was attempt #2 at getting Cortlan's tonsils out - the first attempt being thwarted by a fever 24 hours prior to the surgery.  This is a relatively long and detailed post about how things went...

Once again, we woke and headed to Children's Surgery Center bright and early; I drove Cortlan, while John dropped Everly off at school.  By the time that John arrived at the surgery center, Cortlan and I were already in the exam room.  We saw a million different people, each of whom asked us to confirm Cortlan's birthdate and the reason why we were there.  I was tired of saying "to have his tonsils and adenoids removed"; eventually, Cortlan began to answer for himself.

After a while, we got to the point beyond where we had last time - all approvals were given, booties and robe were on, they had given me an awesome outfit to wear so that I could go back with him to the operating room to be there with him until he was asleep, and we would soon be on our way.

Cortlan held my hand as we walked to the OR, a very nice nurse talking to him about Santa Claus the entire way.  When we got there, he climbed up on the table, initially curling up as if he was going to take a nap.  They asked him to flip to his back, which he happily did, and then they put the mask on his face.  The nurse was still talking to him, asking him what he wanted for Christmas, asking if he had any brothers or sisters, how old she is, what she wants for Christmas, etc., and all the while, he was smiling.  Jingle Bells came on in the music that was playing through the OR speakers; I called his attention to it and at his favorite part, I started to sing.  His eyelids started to droop, I gave him a kiss on the cheek, and he fell asleep, still with a smile on his face.

I went back to the exam room, where John was waiting for me, and I got a little emotional.  It isn't easy seeing your child laying on a table in the operating room, but I was more overcome with emotion at how brave and strong he was, how trusting and confident he was, and at what a good kid he is.  I took off my lovely white jumpsuit, and we headed for the waiting room.

We were told the surgery would take about 45 minutes, so John went to get his coffee while I got comfortable with some grading I needed to get done.  I was surprised when, ten minutes later, a nurse came to get me to talk to the anesthesiologist on the phone.  I spoke with him; he needed permission for them to perform a procedure that was not initially expected and that I had not yet consented to.  They needed to do a tracheoscope and a bronchioscope.  I consented.

I headed back to the waiting area with John and explained to him the conversation that I had just had.  Less than thirty minutes later, the surgeon came out to speak with us.

The first thing she said was that Cortlan was doing well.  The second thing that she said was that he still had his tonsils and adenoids.  Our reaction was not necessarily positive, and she said, "Let me explain."

When they had tried to intubate Cortlan, the tube that they would typically use for a child his age and size wouldn't fit.  They tried the next size down and it wouldn't fit, either.  Neither did the size below that.  They needed to do the scope to determine what the issue was preventing the tube from fitting.  They discovered that his trachea is not much bigger than that of a typical two-year-old's. 

This is and has been an issue on several fronts.  First, we have been focusing on the upper respiratory issues, which are still present, but never thought of lower respiratory issues.  This small airway restricts his breathing somewhat and is what causes his croup-sounding coughing and loud breathing.  Second, the three attempts at intubation followed by the scopes was traumatic enough for the day such that the surgery could not go on.  (Further, if I understood correctly, the intubation tubes they had at the surgery center that were small enough in diameter were for smaller children and would not have been long enough.)

The doctor recommended that we hold off on the surgery until he grows and his airway is larger.  However, she also recommended that we see one of her colleagues and get a second opinion.  We have already scheduled that appointment.  We had been convinced that the removal of his tonsils and adenoids will provide much needed relief for Cortlan.  He can hardly breathe through his nose.  The allergy issues that he has are compounded by the fact that there is no room for drainage.  His tonsils are so large that his tongue doesn't have enough room in the back of his mouth, which will likely (but not definitely) cause issues with his palate and which already seem to be causing some speech problems.  These are convincing reasons for us to go forward with the surgery, but we are certainly interested in another specialist's opinion.

If the surgery does take place sooner than later, we have been told that it will not be at the surgery center.  He will be a slightly higher risk patient and it will be done at the hospital, possibly as an inpatient therefore requiring an overnight stay.  They only do the simplest cases at the surgery center, and not that this will be overly complicated, but everyone (including us, obviously) would feel better with him being at a fully equipped hospital.

After waking up, Cortlan did have some coughing and breathing issues, so they gave him a breathing treatment.  When we went to see him, he was somewhat groggy, but not at all upset.  He was happily watching TV, had already had a slushie, and was about to start his first of many Popsicles.  The nurses couldn't say enough good things about him.  Due to the breathing treatment, we had to wait there for four hours until it wore off. In the case that the issues returned after it wore off, we would have had to have him transported to the hospital and he would have stayed overnight. Thankfully, this was unnecessary.  We hung out in our little room, playing on our phones, watching TV, playing on his Explorer, and when he had to go to the bathroom, we wheeled his IV cart along with us.  Nothing seemed to bother him... Except, perhaps, the fact that he had to face his friends today at school after telling him that he was going to get his tonsils out and wouldn't be in school for a while (again). 

Cortlan was back to normal by the time we left.  He even wanted to stop and get food on the way home, which we did.  I am incredibly proud of him for how well he has handled all of this.  We will continue with the doctors appointments and will see what others say regarding the surgery and will hopefully see the end of this process soon.

Well, that didn't go as planned...

So, I thought that if I got a chance to write today it would go a little differently, but things don't always work out as planned.

When I picked Cortlan up from school on Monday, I noticed he was a little flushed.  When I gave him a hug, he felt warm.  So, I took his temperature and, sure enough, it was 101.  I called the ENT's office and asked if this would affect the surgery.  The answer I got was a hopeful (but not promising) "the surgery will most likely go on."  The thought was that there would be enough time between then and Thursday to fight whatever it was that he needed to fight, and we would go as planned.  I was also told that they would likely proceed with the surgery if the temperature was mild.

Cort's temp was less than 100 on Tuesday, but when I picked him up from school yesterday (Wednesday) it was back up to 101.  I began to worry, but still felt hopeful, as he was acting like his normal self and even wanted to ride his scooter around the neighborhood.

We got up this morning as usual.  John took Everly to school and Cort and I left for the surgery center with him comfy in his PJs.  John met us there.  We sat in the waiting room for a bit and then were moved to an exam room.  One person after another came in asking us questions and giving us information.  One nurse took his temperature (it was normal) and blood pressure.  One went over procedures with us and gave us a hospital shirt and booties for him to wear.  Someone took a reading of his blood oxygen levels.    Everyone asked us questions, including about his recent health, and I was truthful about the temperature and minor symptoms he has been experiencing.  Things continued to proceed.  A nurse told us what would happen with the anesthesia.  Then the anesthesiologist came in.  And then the surgeon, who had been told about the temperature.  A discussion ensued, and it finally came out that despite the fact that the anesthesiologist had no concerns for Cortlan's safety or health during the procedure, the recovery may be another issue.  The doctor did not want to proceed with the surgery.

Obviously, I don't want Cortlan's recovery to be any more difficult than it need to be and I know the right decision was made.  But, I have been having a very stressful couple of weeks.  Having things planned, and then - by surprise - changing the plans kind of makes me lose it more than it should, admittedly.  I handle things much better when I have time to prepare.  Despite the fact that I knew it was a possibility, I had not prepared for the fact that the surgery had to be canceled.  So, the doctor might think I am a little bit of a wacko right now.  (John might, too, but I am pretty sure he already knew.)

Finding a date that worked for this surgery was a challenge.  Finding a new one - even more so. In this case, it isn't necessarily the surgery, but the two weeks of recovery that come after.  I don't want Cort to miss out on the holidays.  I don't want the surgery to be when I am in New York City for school.  I don't want the surgery to be on the day of Cortlan's fall festival for which he has worked so hard for months to prepare. 

After getting the news and some awkwardness, we went across the hall to get a chest x-ray.  We went to his pediatricians.  We stopped by the ENT's office to schedule another surgery.  This time it will be on December 5th, and we are praying that he will be healthy for it.  At least we will know what to expect.

The story of the tonsils

Cortlan has hardly been able to breathe through his nose since February.  Initially, we thought he had a cold, and he may have.  But the cold never went away.  Our current assumption is that as the cold improved, his allergies took over.  At the time, we didn't know that he had allergies, but we did take him to his pediatrician at one point in the spring.  His eyes had gotten puffy and his head was still congested; she prescribed him eye drops and an over-the-counter allergy medicine.  The eye drops helped considerably, but there was only a slight improvement with the congestion.

As spring turned into summer, Cort still got no relief.  Thank goodness for a Costco membership, as buying tissues in bulk became a necessity.  Eventually, we decided that we had to take this to the pros and we went to an allergist.  The allergist tested him and determined that Cortlan is severely allergic to grass, ragweed, and a few other weeds for which they specifically tested.  He also is allergic to cat and oak.  The specialist recommended continuing the course we were on and added a nasal spray, as well.  At that first appointment, he mentioned that we may need to check on his adenoids.  We made a follow-up appointment for a month later.

At the follow-up appointment, the doctor asked if we noticed a substantial difference after using the nasal spray for a month.  We hadn't.  There was some difference, perhaps, but he was still unable to breath through his nose.  The doctor noticed signs of infection and put him on antibiotics, but even after going through the course of them, he still didn't seem much better. At that follow-up appointment, the allergist indicated that the nasal spray may not be getting to where it needed to to cause improvement due to enlarged adenoids.  He recommended that we see an Ear Nose and Throat specialist to get them checked. 

About two weeks later, we were at the ENT specialist.  I hadn't told Cortlan what to expect, because I wasn't entirely sure myself, but the thought was that he would have to have a scope done that would go through his nose to examine the adenoids in the cavity behind.  In the initial examination, however, the doctor looked in his mouth and had him say "Ahhhh."

"Wow!" she said.  "You have really big tonsils!"

She continued the exam, and at one point turned to me and said, "I can certainly do the scope if you want me to, but I can tell you right now that my recommendation is to have the tonsils removed.  Once I am in there, I can examine the adenoids and remove them if necessary."

The thought is that his large tonsils are restricting his airway, causing problems that range from snoring to lack of airflow through his nose to problems with drainage from his nose.  The doctor said that without surgery now, an orthodontist would likely be sending him to have it later, as there is no room for Cortlan's tongue in the back of his mouth.  This could cause problems with his pallet and the roof of his mouth may become misshapen in time.  The surgery needs to happen.

That appointment was on October 4th.  Two days from now, on October 18th, Cortlan will have his tonsils removed.  We are very hopeful that there will be a noticeable difference and that he will find relief.  We are also hopeful that the recovery goes well.  Cortlan is a tough kid; he is very tolerant and rarely complains when sick.  When he had to get his blood work done, he quietly sat and watched as the technician inserted the needle into his arm and drew three vials of blood.  The tech commented that he handled the process better than many adults.  Even still, you never know what to expect with things like this. 

I have stocked up on popsicles (I have maybe bought two or three boxes in his life until this point, so this will certainly be a treat) and Italian Ice.  We made home made apple sauce on Sunday, and I bought plenty of soup and a spaghetti squash.  He will have to spend at least a week out of school, inactive, and he is not going to be able to go to soccer or gymnastics for two weeks, so as a surprise, we also got him a new game for his Explorer.  (We also prepared for the bouts of jealousy that Everly will likely experience over the attention, the special diet, and Cortlan "getting to go" to the doctors.  For one, she is getting a new pair of boots.)

So there you have it...the story of the tonsils.  The next couple of weeks should be interesting in many ways.  It should be no big deal; We are ready.  And Cortlan has been counting down the days.