Through the Looking Glass

 

Many of you by now have seen the tweets or Facebook posts about issues surrounding my ten-year-old son, Trevor.  For those who have publicly, privately, or unbenknownst to me expressed their support (for the most part) to a kid they’ve never met before, I appreciate it and then close this run-on-sentence.

August 2010 - USTA Boys Nationals, Stowe Stadium, Kalamazoo

Up until 8 months ago Trev was a healthy, happy, energetic boy.  Avid, and quite good at tennis, but interested in all sports he was the kid who had a never-ending supply of energy.  Then he started experiencing G.I. issues.  Initially this cramping would manifest itself after or during the tail end of tennis practice or after meals.  It was hard to isolate.  As time went on, this pain became chronic – lasting days at a time and usually after tennis practice.  He’d have practice on a Tuesday night and miss school on Wednesday and Thursday due to pain – missing tennis practice on Thursday as a result.  We had x-rays, sonograms, ultrasounds, MRIs and diagnoses ranged from extreme dehydration to appendix or gall bladder.  Nothing ever panned-out; nothing was ever conclusive.  For about 5 months we thought we figured it out and self-diagnosed him as lactose intollerant because cutting out dairy seemed to originally help.  The issue is, as we know now, intollerance would manifest itself as diarrhea,  not constipation.  Sure the removal of dairy helped him – cheese is the duct tape of the food pyramid!  So in addition to severe constipation and cramping we told him he couldn’t have ice cream.  Parenting is a consistent learning process and you never get an A.

We finally decided to take the approach to have his appendix removed as he was diagnosed with chronic appendicitis.  At the same time the surgeon would explore the abdomen since it was still not a cut & dry diagnosis that THIS was the issue.  It was our best guess all-around and our son had missed two weeks of school total since September and had ceased tennis – which is his favorite thing in the entire world.  His quality of life was shot.

The surgery was on Monday 1/31/11.  This was the beginning of what has come to be a period that is at the same time a blur of days and a quagmire of pain; full of emotional lows, and affirmation of the human spirit to survive and to support. 

The surgery was textbook by all accounts.  He was in and out in an hour and recovery was smooth.  We were admitted, as is typical, for an overnight stay in order to ensure bowel function and diet resume.  It’s hard to piece this all together now, but from my recollections Trevor spiked a 103 degree fever that night.  Over the next day it stayed that high and meds didn’t bring it down.  Finally on Tuesday night it broke.  Trev had a few bouts of vomiting and one instance of diarreha during this time period and everyone: nurses, physicians, PAs, residents, parents all associated it with the flu.  Flu is passed around hospitals like Madonna in 1984 NYC.  We had bloodwork done to look at signs of infection and his white blood count, while elevated, was not alarming enough as to convince his surgeon to keep him in the hospital.  His fever since broken, and with no more vomitting , Trevor was discharged. 

Thursday early morning through Sunday morning was a blur of Trevor vomiting, spiking and then breaking fevers (though none as high as when in the hospital.)  He developed diarreha as well, and could hardly keep anything, other than some small amounts of water down.  That included any pain meds.  On Superbowl Sunday – 6 days after surgery and three-and-a-half days after discharge we all agreed to return to the hospital after being in contact with the doctor at various points over the previous few days.

Trevor weighed 77 pounds when he was admitted for surgery on 1/31/11.  When he was readmitted on 2/6/11 he was at 70 pounds.  Due to his condition over the previous 8 months he had not gained any weight even though he was going through a growth spurt that added over an inch to his height.  He was skin on bones Saturday night when we bathed him.

Sunday 2/6/11 he was readmitted and was placed on IV fluids to rehydrate him.  The first course of action.  Nothing more was planned.  He and I watched the Superbowl and cheered on his team to victory.  Our friends Scott and Karen had sent him a jersey earlier in the week – it was the first smile we’d seen on his face in days when he opened the package.  His IV would not afford him the ability to wear it.  Instead, it laid above his head in his hospital bed.  Amy stuck around until halftime and then it was guys’ night from there.

Monday 2/7/11 the surgeon ordered a CT scan and it was determined he was full of abcesses – pockets of infection – throughout his abdomen based upon the surgeon aspirating a great deal of puss from once of his incisions.  This could be an indication of more infection throughout and could explain the pain in Trevor’s lower right abdomen – the infection internally could be feeding the now aspirated wound infection on his lower left.  The CT scan didn’t occur until 5.  Arrangements could not be made between the Pediatric Sedation and the Radiology Team for performing the aspiration of smaller pockets of infection and catheterization of the larger pocket.  In the meantime he was placed on a cocktail of IV antibiotics.  And Morphine.  Amy stayed the night.  I went home late to stay with Austen and ensure he got to school okay the next day.  Thus began the routine of one parent staying the night and the other coming in at 8:00 am the next day to relieve them so they could go home, shower, and come back.

Tuesday 2/8/11 was the day he was surgically catheterized for treatment for the infection.  Antibiotics continued.  Amy stayed the night again so I could pick Austen up from school after yearbook and spend time with hime before and at Boy Scouts.  Trevor was pretty much out of it.  Austen and I showed

February 2011 - With His Hand Up Robert In A Nefarious Fashion

back up after scouts and brought donuts for the next morning.  For the first time in over a week Trevor was interested in food – fried chicken and donuts.  I would typically not be too keen with such a poor choice in diet, but I’d feed him a bucket of lard if he had asked for it.  He had some noodles with dinner though and everything was going well – so we thought.  Our dear friends Yanni and John Robel sent us an amazing fruit and chocolate edible arrangement.  Amy stayed the night again.

Wednesday 2/9/11 was a crushing day for us.  We started to see the benefits of treating the abcesses.  The old Trevor – funny, charismatic, and goofy – began to emerge.  He had a couple bites of bacon and pancakes.  He had visits from his tennis coach and a friend I’ve known for 15 years who also cuts Trevor’s and my hair.  He was showered with presents and candy and a giant yellow tennis ball from the Syndey Olympics signed by all his tennis classmates and coaches.  We all agreed his balls were bigger than this elephantic volleyball sized orb.  We had a great visit, but around mid-afternoon Trevor began to tank.  It was becoming painful to sit at all.  The surgeon was intrigued enough to take him down for an ultrasound.  While the abcesses appeared to be clearing up, what happened was these pockets of infection (which are encased in a shell of our bodies own creation for containment) were pushing his bowels all over the place to conform to their shape.  This caused a bowel obstruction in the process.  The period of 5 pm that night until 10 pm was and is a blur of stress and emotion.  The doctors were advocating for placing a suction tube down his nose and into his stomach to relieve the fluids building back behind the obstruction and into his stomach.  In theory it would reduce the painful nausea that was now the new norm and also allow the bowels to begin working correctly.  This should resolve itself in 2-3 days so we’re told.  The alternative – if this does not resolve itself is surgery.  We also then had to place him on a no-food-or-drink plan.  He would also get a new IV line that would involve feeding nutrition deep into his body from his arm up his shoulder, and just above his heart through a major vein.

So we watched our son get tubed.  We fought back tears (poorly) for those hours and hours after.  Amy went home a wreck.  I stayed the night and awake until I fell asleep for about an hour around 4 am.  Trevor had told me that I am hard to wake up.  I was worried that if he needed me I’d not respond.

Thursday 2/9/11 was the day that Trevor got his pick line for nutrition.  He was sedated almost the entire day.  I went home and slept for about 3-4 hours but had to be back to do some things with Austen after school so I only saw Trevor for about an hour.  This was also the first of many days spent futzing with the suction (NG) tube that was supposed to suction the contents of his stomach.  Suction would cease all the time and basically invalidate the reason for the tube.  As I sit here now writing this at 12:17am on 2/12/11 the night nurse is once again messing with the NG tube because I buzzed her in.  The Robels came through again by sending both Trevor and Austen Lego kits.  Amy stayed the night.

Friday 2/10/11 brings us up-to-date.  Today I expected to start to see the benefits of all the hell my son had been put through.  Instead I walked in at 8:00 am to Amy and the nurses repositioning the tube as they had done all night long.  He is now able to sit up and even took a 30 minute wheelchair ride in the morning.  Kendra Little and Jeremiah Peschka, the cutest and oddest, and most perfectest couple that we know sent Trevor a rabbit puppet (Robert), a cat puppet (Geddy), and a C3PO Mr. Potato Head (C3PO, duh).   This evening we went for a 15 minute walk around the ward after a Morphine dose.  The tour started with him singing “That’s The Way I Like It” by KC and the Sunshine Band and dancing gingerly past the nurse’s station.  It ended with me holding up 70 pounds of dazed boy as Amy scrambled for a wheelchair.  Earlier in the evening, while helping him use the urinal jug he asked why his <REDACTED> get’s hard sometimes.  He was concerned it was broken and stated he didn’t like it.  Then again, this was the kid that chose me to give him his shower on Monday instead of two cute nurses.  I blame the Morhphine again for that.  Drugs are funny.  Just say no.   ;) 

I’m documenting this for myself and Amy as much as I am for anyone else.  It’s also nice to be able to point someone to a URL rather than thumb this repetively into a cell phone’s email client over and over again.  I once again want to thank all of those who have been with us in this fight – the members of what I’ve been calling Trevor’s Army.  He is so geeked out when he hears that someone in Australia is sending their best wishes; or Seattle, Texas, North Carolina, or Florida.  Hopefully this nightmare ends in a couple more days and life begins to resemble what it was before all this.  If it does you all played a role in it simply by thinking about Trevor and us and boosting his spirits in the process.

Thank you seems like such a hollow thing to say compared to how I and my family feel about all of you.