Feeds:
Posts
Comments

Posts Tagged ‘Children’s’

easter2

 

I’m setting this up to post to my blog in advance so that while I am on my cruise, it will post on May 3, 2013 … right on schedule. 

What’s ironic about the day is … I am scheduled to be in Maui then, snorkeling.  My 2nd son (my deceased son), Keegan, loved to swim.  Keegan loved to snorkel.  We did that on his Make-A-Wish trip with Disney Cruises in 2001.  Additionally, whenever he used to order fish at a restaurant, he would loudly say “fishy fishy” (you had to be there to get it, I suppose).  It all started because once when he was quite young, he had stated that’s what he wanted for dinner and it came out louder than he’d intended, causing the entire restaurant to laugh.  So he kept it up.  That means that now … whenever Roy and I snorkel … when we see our first fish … we have to bob up, look at the other, and yell “fishy fishy” over the waves to the other.  Like I said … you had to be there to get it.  It makes us laugh anyway.

In any event, I’m posting this on May 3, 2013.  Keegan was diagnosed with Cystic Fibrosis on May 3, 1984, 29 years ago, when he was just barely 2 months old.  I originally wrote this in 2001, right after my second child, Keegan, died, but it’s appropriate to me to post it now, at least in my not-so-humble opinion, as it gives a bit more of my history, my story, my background, and the challenges my family and I have encountered over the years.

I only wish that Roy could have met Keegan face-to-face in person.  He knows him spiritually … but he never got to meet him in real life.  I am forever grateful, however, that Roy honors the memory of my son with me and allows me to continue to grieve his loss or celebrate his life/spirit whenever I need to do so.  In my opinion, that shows a true partner, a true soul-mate, and a true man.

Keegan … we miss you still and always will.

So … with that … carry on …

*~*~*

2001

“The nurses at Stanford University Medical Center see a lot of transplant patients, but they will never forget the kid with the green hair.”  Dolores Fox Ciardelli in an article that was written for a small local weekly newspaper called the “Pleasanton Pathways” wrote this.  When Keegan was born 17 years ago on February 29, 1984 (yes, Leap Day), I never ever thought this would be something closely associated to my family.  At the time he was born, I didn’t even know what Cystic Fibrosis was, let alone worry about transplant.  Transplants were those things they tried and experimented with but were only for those “other people” that had illness in their family.  I didn’t have that.  My family had always been healthy.  And green hair?  My family wasn’t into odd colored hair.

It was a long time before I had to worry about any of this.  People think now that just because Keegan received a double lung transplant at the ripe old age of 16 means that his health had been crummy since he was a baby.  He had a rough start to his life, but once he was diagnosed, things were great since we knew the problem, and the main reason that he had been diagnosed with CF very young was due to the perceptiveness of a young and competent pediatrician just out of training that had done rotation with a CF team as an intern and resident.  Let me back up though.

Keegan was born on 02-29-84.  It was an emergency cesarean because of the size of his head to my pelvis.  He was a big and well-formed baby with good weight (8-lbs. 11 oz). I have another son (Logan) that is 15½ months older than him, so I had quit work for a while to stay home with my two babies.  I was 29, almost 30.  Things were great.  The c-section, although to me seemingly awful, really was flawless. He had huge brown eyes and lots of straight blonde hair.  He was angry from the minute they pulled him out, especially since they had to suction his lungs, since he’d sucked in amniotic fluid, which is common, apparently, with c-sections.  He had minor issues at birth and went home seemingly healthy to the doctors. 

However, to me, something seemed “wrong”.  I couldn’t put my finger on it, but Keegan didn’t seem to eat properly.  Logan had always eaten like a horse and had gained weight magnificently on my breast milk.  Keegan, on the other hand, would suck a very short time and then scream and scrunch up.  His bowels seemed ok but a bit sticky.  Oh well.  It cleared, and then it seemed like any newborn on breast milk … but something still seemed wrong to me.  He didn’t eat right.  I was told that I was just being a nervous mother and not remembering how newborns could be.  This didn’t seem right to me.  Logan is only 15½ months older than he is.  I remembered too well how much Logan ate and how he had thrived on my milk.  Keegan did not.  Oh well.  He’s a different individual.  Perhaps I just need to learn his body needs and personality.

Things seemed ok when we got home, but he still didn’t eat right.  His diapers got runnier and runnier and looked like milk was just on a direct pipe from his mouth to his diaper.  I went to his 2-week-old check-up.  He’d gained no weight.  The doctor looked a bit concerned but told me that this happened on occasion and that perhaps my milk wasn’t good enough.  I listened, but this didn’t seem right to me either.  Logan was 9½ lbs. at birth.  He was 30 lbs. at 1 year.  This was on my breast milk.  How could it be that much different?   He wrote down “failure to thrive”.  Go home and try to feed him more often.  I fed.  He vomited it back up. Ok, well, we’ll try to see how much milk he takes in.  They measured.  It was a lot.  Go home.  Feed him slower but often.  He wouldn’t eat, or he’d throw up.  Ok, then, we’ll see if it seems rich enough.  It did.  Maybe it’s too rich.  It wasn’t.  Ok, then, we’ll try additives and formula.  No good.  “Failure to thrive.”

About two days before Easter, he came down with a really awful cold that his father, his brother, and I all had gotten.  We were all coughing.  So was Keegan.  No big deal.  This was a respiratory thing.  It’ll go away.  Easter.  He was feverish and sick.  I called the doctor.  I met him at his office.  They prescribed some oral antibiotics.  Easter Sunday.

We were giving him the antibiotics.  The rest of us were improving.  He wasn’t.  He was getting worse.  May 3, 1984.  I brought him to the doctor.  He sent us to the hospital for tests.  “Don’t worry.  It’ll be ok.  We just need to see what’s going on.”

May 3, 1984.  His dad came to the hospital after work.  I had gone there from the doctor’s office.  My mother was home babysitting Logan while I went to the doctor with Keegan.  Logan was sick.  My sister came to help out, and my mom came to see what was going on at the hospital.  The pediatrician was there telling me that they would be running routine tests in the morning.  It was a hot day – unseasonably hot for May.  We were at John Muir Memorial Hospital in Walnut Creek, CA.  Keegan’s dad, Mark, picked him up and gave him a kiss.  He said “God, you’re a sweaty boy.  You are really salty.”  I saw a look pass over the doctor’s face that I knew wasn’t good, but I didn’t know what it meant.  I’ve since learned not to like that look when I see it.

Anyway, he mentioned a bunch of tests they wanted to run.  I don’t recall what most of them were other than they were mundane, and I recognized them, and they didn’t seem like a big deal.  In the middle of all the things he mentioned, he also stated “cystic fibrosis”.  “What the heck is that???”  “Don’t worry about it.  It’s probably nothing.  We just want to rule everything out.  I wouldn’t bother checking medical journals.  They won’t tell you much.”

I spent the night in a chair in the hospital by my baby’s side.  His dad went home to take care of Logan and to call his other grandmother to come watch him, since I’d be at Muir with Keegan.  She came.  He went to work the next morning.  They had Keegan in a mist tent.  They had him hooked to oxygen.  They took blood.  They took stool and urine.  They did a strange little gauze test to collect sweat on his arm.  They told me to keep him in his room, because they didn’t want him to infect anyone else if he had something.  They discovered he had no bacteria growing.  That’s a good thing, they said.

The next morning (May 4, 1984) about 10AM, Tracy Trotter, our regular pediatrician, appeared in the doorway of the hospital room.  “Jill, I need to talk to you.”  Keegan was lying in a crib near me.  We were in a double room, but the little kid with the broken leg had left a bit earlier.  I was alone.  His dad was at work.  “We are very certain that Keegan has something called ‘cystic fibrosis’, but you need to take him to Children’s Hospital in Oakland.”  “What is that?”  Go there.  They’ll explain it.  “I don’t know where it is.”  They gave me directions.  Why didn’t they send him and me, since I was close to shock, in an ambulance?  I’ll never for the life of me figure that out.  I called his father, Mark, holding myself together to get through his secretary until he picked up the phone.  Tracy Trotter was standing there hanging onto me.  I was sobbing in the phone.  Mark dropped everything and said, “I’m catching BART.  Pick me up.”  I cried on Tracy Trotter’s shoulder while he attempted to console me.  I didn’t even know what CF was.  Why was I crying?  I didn’t know.  I just knew whatever it was, was a big nasty thing.  I knew that they were upset, so I knew that I should be.  I knew something big time was wrong.  Tracy told me that things would be fine.  I’d learn to be a good CF mother and Keegan would be fine.  I remember yelling … “BUT I DON’T WANT TO BE A CF MOTHER.  I REFUSE TO BE A CF MOTHER.”  (Isn’t denial great … especially when you don’t know what you are denying???)

I packed up Keegan and his stuff and walked out of the hospital.  I remember someone saying to me “oh how wonderful that you get to bring your baby home”.  I remember just staring through them.  I remember them asking if I was ok.  I wanted to scream yes and no and anything but my mouth didn’t work.  I just kept walking.

I drove to BART.  From the time I got Keegan into his car seat to when I got to BART, I have no recollection.  It’s at least a 20 – 30 minute drive.  There’s nothing.  So I parked at BART.  Mark got off at the opposite end of the station from where I parked.  I was 4 long city blocks away.  He heard me scream for him over the city traffic and the passing BART trains.    I remember watching him run from the stairway he came off of to the car in his suit and tie, carrying a briefcase.  He was at a dead run.

Now here is where it’s interesting.  I don’t recall driving to Children’s.  I don’t recall getting there.  I don’t recall parking.  I don’t recall going into the hospital.  I don’t recall checking in.  I don’t recall going up in the elevator to the 5th floor where they kept the CF children then.  I don’t recall going into the room.  I remember meeting a family that we were sharing the room with.  They had experience with CF.  (This is when they still roomed CF patients together before they realized they shouldn’t.)  But they had “experience”.  Their daughter was 7 months old.  Wow.  They’d teach me.  The other baby’s father was watching the Kentucky Derby preliminaries.  My mother and my sister were at the hospital when we arrived.  I do remember that.  I remember a doctor showing up in our room … Dr Nickerson was his name.  I didn’t like him from the word “go”, but then I wouldn’t have liked anyone at that point.  I remember him taking us to an empty conference room on the 2nd floor in the Pulmonary Department.  The Kentucky Derby preliminaries were on an overhead TV in the room.  He sat down and clinically explained CF to us.  I was a bit stunned and in shock.  I remember forcing myself to be with Keegan while they worked at getting IV’s in his arm.  It took several tries.  He screamed the whole time.  I sobbed.  They tried to drag me out.  I remember telling them … screaming at them was more the case … that this was my baby, and they weren’t going to take him anywhere without me.  It finally got in.  They told me that I didn’t have to force myself through all that.  My sister and my mother could hear the screaming baby down the hall with me yelling too.  I told them I had to force myself through it when he was an infant so that when he was older and needed his mommy as a toddler to sit there, I could do it and not fall apart or faint or whatever.  I made it.

The next day (Saturday, May 5, 1984), Dr Nickerson showed up again.  He talked to us in the room this time.  “Your baby is malnourished, dehydrated, and anemic.  Both lungs have collapsed.  We may have to do a blood transfusion.”  The Kentucky Derby was playing in the background.  “He may die.  He’s not at all well.  Why haven’t you brought him into any doctor before now?”  I nearly fell apart with that accusation.  We’d been in and out of doctors’ offices since he was born … but … I held together.  He had my child’s life in his hands.  I needed to keep it together.  I remember telling him to not do a transfusion and to only do one from someone I picked if they really had to.  This was when blood supplies could still be tainted with AIDS, because they were still figuring that out.  That’s all I’d need. 

I still can’t fathom how I got from Muir to Children’s on my own.

On Monday morning, May 7, 1984, John McQuitty took up ward duties in the hospital.  He came in and asked how I was.  He asked how Keegan was.  He asked how Logan and Mark were.  He asked if I was sleeping yet.  He told me it was ok to cry.  He told me that he wanted my input on Keegan’s well-being, because, while I might not understand CF yet, I lived with Keegan 24 hours a day and would know him as an individual better than any doctor would.  He listened to me answer questions.  He could tell I was holding myself together.  He could tell I was “staying strong”, because that’s the way I was taught to handle any challenge in life.  “Don’t show your weaknesses.  Don’t cry.  Don’t show your dirty laundry.”  He told me it was ok to cry.  He listened to me.  John McQuitty saved my sanity.

The Kentucky Derby.  Easter.  They still make my stomach and my head do weird flips.  Just the topic can make my stomach clutch up.  Only a CF parent or those that have been through hearing that they themselves or a loved one have CF (or any other major life-changing, life-threatening illness) will understand that certain days and certain events will always remind them of when they heard.  The Kentucky Derby.  Easter.  It’s odd that good days like those can make my stomach clutch and turn inside out.

 

 

 

Read Full Post »