Just A Normal November

Just a Normal November

I’ve been journaling since 1995 when our daughter, Renee, first went into the hospital.  In those early days, our hearts were perpetually in our throats with every development.  Over the last 15 years we have grown to understand the fragility of our children and trust the medical people to take care of them.  In only one case were we betrayed.
But, the continuous uncertainty slowly seeps to the background and we get on with living life the way it is.
Here are typical journal entries for a section of November, 2010.

NEPC
2010/11/15 13:12-15:10 Monday [Ferne and Don]
We visited Kimee (Renee’s daughter) at New England Pediatric Care.  Ferne was at a concert Sunday, so we delayed our visit to Monday.
Kimee was in her chair, awake, stats: 89% @ 118 bpm on 2.0 l/min oxygen and cool mist.  Tammy, her nurse this shift, said, “She may be getting tired.  She’s been up since 10:00.”
I asked, “No school today?”
Tammy said, “No, not today.  She has to be temp normal for 24 hours before she can go back to her regular schedule.  She was temping last night, but no temps this morning... 97 to 99 degrees.”
A few minutes later, an aide came in to put her back to bed.
Ferne put away the clean clothes and started knitting a new scarf while watching the PBS station on TV.  I sat next to Kimee’s bed and read my magazine while stroking her hair with my fingers.  Kimee slept.
Her stats only stayed above 90% for about an hour.  Tammy had to suction her to get her stable again at 93% @ 108 bpm.
Just before we were to leave, I noticed Kimee give a periodic shudder, like a big shiver, every few seconds.  Her heart rate was up to 132 bpm, also.
I told Tammy.

We shopped at the Christmas Tree Shoppe in Salem, NH, on our way home.  The place was jammed.
They say we’re in a recession?  Not here.  People spending a lot on junk.
Then I looked at our cart and chuckled.  And so are we.

We next stopped at McKinnon’s Market.  I parked out back where there were more spaces and I could open Ferne’s door wide to assist her getting in and out of the truck.
The parking lot had been recently repaved and the smell of the asphalt helped mask the essence rising from the receiving dumpster behind the meat department.
As we walked past the dumpster around to the store’s front entrance, I said, “The rendering plant must be late exchanging the container.”
Ferne’s only comment was a long groan.

Girl Scouts, in uniform, on either side of the entrance door, were excitedly shaking their cans at us asking, “Support our troop, support our troop?”  The cans only had a few coins in them, tinkle, tinkle, tinkle.
“Which troop is that?” Ferne asked.
“Troop 328 in Salem,” one said.
“Maybe on our way out.”
The scouts looked a bit disappointed for a second, then approached another woman coming up behind us.  “Support our troop, support our troop?”
I freed a shopping cart from the corral so Ferne could use it like a walker as we shopped.  Her hip arthritis was flaring up again.
She said, “They’re about the same age as Kimee.  We should give them something.”
I said, “Kimee’s a long way from being like them.  Okay, on our way out.”

It was about 17:30 when we checked out.  The sun was just dipping, with a golden haze, into the horizon when we encountered the Girl Scouts again.  Before I could retrieve my coin purse, my cell rang....
It never rings.  It’s a prepaid TracFone.  $100 a year for 800 minutes.  At the end of my second year I still had 1,370 minutes.
My immediate thoughts were, Oh, oh.  What’s wrong with Kimee now?

NEPC
2010/11/15 17:30-17:32 Monday [Don]
Tammy called my cell.  She said, “Kimee can't keep her SpO₂ above 90% on three and a half liters of oxygen.  We gave her a Diastat and Motrin, but they aren't helping...”
“Is that what she was doing as we were leaving?”
“I looked at her a couple minutes after you left and I haven’t seen that shuddering before.  It’s not a ‘normal’ seizure.  But, we’re more concerned with her SpO₂ levels.”
“What’s her heart rate?”
“High, real high.  We called the doctor and he decided to send her to Tuffs Medical Center in Boston by ambulance.  Pickup is expected in 10 to 20 minutes.”
“We’re too far away to get back there by then,” I said.
“She has to go right away, we shouldn’t wait.  It’ll be a one-way trip though.  They’ll probably admit her.  You’d have no ride home.”
“Should we just drive down to Boston?”
“I wouldn’t while she’s in the ER.  You could call them in about an hour to get an update.”

While I was on the phone, Ferne donated some coins to the Scouts.  They were both twelve, same as Kimee.
“Why can’t Kimee be in the Girl Scouts,” Ferne said, as I helped her into the truck. “They’re raising funds to go to a jamboree?  Instead, Kimee’s making hospital rounds... on a gurney.”

I drove us home, tried to eat supper, but nothing tasted right not knowing about Kimee.

TMC
2010/11/15 19:40-19:50 Monday [Don]
I called the main number at TMC.  After a couple transfers I was given to the proper operator, a nurse, Kim, in the ER.
Kimee was still there but will be admitted to the Pediatric Intensive Care Unit (PICU) in an hour.  She has pneumonia.
Again?
I told, Kim, about her viral pneumonia two weeks ago that was treated at NEPC.  She gave me the PICU number.

TMC
2010/11/15 22:10-22:15 Monday [Don]
A doctor from the TMC-PICU called to tell us Kimee was admitted.  I told him about her viral pneumonia and he said, “She probably just hasn't gotten over the first bout yet.”
I asked, “Is it possible the virus has evolved to be more immune to her body’s defenses?”
He said, “We’ll see.”

TMC
2010/11/16 09:25-11:15 Tuesday [Don]
Rather than drive alone to Boston, I decided to take the Boston Express bus to South Station, to visit Kimee.  I qualified for their senior discount between 09:00 and 14:00, weekdays, $6.50 each way.
Departed Londonderry at 09:48, short stop at Salem, arrived South Station at 10:55.  I bought the return trip ticket before leaving the terminal.
It was a short walk, about 10 minutes, to TMC.  I arrived at the 6th floor PICU doors at 11:15.  A sign beside a wall phone said ‘Call 6-50xx for entrance.’  Another sign indicated ‘No Cell Phones.’

TMC
2010/11/16 11:15-12:45 Tuesday [Don]
I turned off my cell and called the PICU desk for entry.  After asserting I was Kimee’s guardian, the door lock buzzed and I opened the big massive door.
An aide at the desk checked my ID and asked if I had the guardianship order.
“Not with me, but Kimee has been here so often and has a big chart on file, it should be in there from 1998.”
She looked at her screen.... “Oh, yes.  Here it is.”
She introduced me to Diane, Kimee’s nurse for the day shift.

Kimee was in unit #1, asleep peacefully, tilted up 5 degrees and covered with a felt blanket.  The lights were low.  A monitor on her left side showed her stats: 100% @ 130 bpm, respiration rate 24, and her last automatic BP, 79/60.  The monitor on her right side was for the vent.  Her breathing was light, so the vent had to boost her several times a minute.
She was dressed in a jonnie and a towel tucked under her neck absorbed a lot of drool.  The ruminant of a little tear was on her left cheek.
Shortly after I arrived she started shaking that exaggerated shiver like she did on Monday’s visit.  She opened her eyes wide and shed numerous tears.  Alarms sounded and a respiration tech came in to check.  He said the shaking messes up the SpO₂ reading.  It went low to 80% while her respiration rate went up to 57/min.
In 10 minutes she calmed down some.  Her resp dropped to 24 but her stats remained 97% @ 132 bpm.  The shaking became intermittent, off for a minute and on for five.
Diane, gave me a rundown of what they were doing for her.  They were most concerned about her pneumonia.  She then said, “She has been put on precautions; gowns, masks and gloves required for the staff.”
I asked, “Do I need to wear them, too?”
“No, you don’t go from one patient to another.  It’s just for us.”
She said they took a lot of cultures in the ER last night...  waiting results.
I told her, “NEPC also took a lot of cultures two weeks ago, all negative, and concluded her pneumonia was probably a virus type.”
Diane said, “There’s not much we can do for virus pneumonia.  The body just has to fight it itself.  They took a virus scan today, though.  There may be something we can do to help for the symptoms.”
The ER called NEPC last night and got the latest settings for her vent.  She appeared stable with those settings, but continued shaking with her eyes open.
An hour after I got there, a doctor came in and suggested, “The pneumonia may be a result of the seizures... or the other way around.  Stress related.”
I asked, “Is that shaking really a seizure?”
He said, “Don’t know.  Neurology has not evaluated her yet.”
He ordered Augmentin (antibiotic) to be given.
Diane put it in through the PIC I-V line in her left foot.  In about 10 minutes Kimee calmed down and slept.  Eyes closed, no more tears and the heavy drool eased.
Diane recommended the best time to call was 08:00 or 20:00 as that is an hour after shift change and an hour before meds rounds.

TMC
2010/11/16 12:45-15:03 Tuesday [Don]
I left Kimee and stopped for a turkey melt sandwich at the “Au Bou Pain” canteen on the street level.
I sat at the only table available, by a window looking out on Washington Street, which passes under Kimee’s wing of the hospital.  The room was filled with staff (talking politics), patients (talking shop) and visitors (bewildered by the bustle and press of the crowd).
I had been there more times than I’d care to count since 1998.  But I didn’t feel like I knew the place.  It wasn’t like going ‘home’ to where we were first presented Kimee so long ago. 
I know the great things that they’ve done for Kimee and others upstairs.  But the noise and congestion on the bottom floor reminded me more of a factory than a great hospital.
I ate my lunch... good... but expensive.  Yeah, this is Boston.
I switched on my cell and called Ferne, but could barely hear because of the background noise.
I arrived at the bus terminal at 13:18.  Waited for the next bus and read my magazine.  The bus left South Station at 14:02, short stop at Salem again, and arrived Londonderry at 15:03.

TMC
2010/11/17 20:40-20:45 Wednesday [Don]
I called TMC-PICU and talked to Kimee's nurse, Heather.  Jill was her day nurse.
Kimee has had a good day.  The viral scans results are still not back yet.
Heather was about to change Kimee and give her chest PT.
I told her about Kimee's hivey appearance when she would ordinarily be crying.  “Don’t let it panic you.”
She thanked me, “That’s interesting to know.”

TMC
2010/11/18 22:50-23:00 Thursday [Don]
I called the TMC-PICU and talked to Kimee's nurse, Heather, again. 
Kimee has had another good day.  She was off the vent for an hour and a half today.  They have not said when she may be going back to NEPC.  They want to get her back to her baseline first.
I said I may be coming down tomorrow.

TMC
2010/11/19 09:30-15:05 Friday [Don]
Ferne has a busy day planned for tomorrow, so we decided to go down by car the following day if Kimee is still there.  I'd go by bus today.  I took some work to do in transit.
Arrived South Station 10:52 and bought my return ticket.
Arrived PICU at 11:10 and called 6-50xx for admittance.
Kimee's eyes are open a bit, stats: 100% @ 113 bpm and 18 resp at 35% O₂.  They don’t list her oxygen by flow rate, but by percent of oxygen in the air she breathes.  28% is what you get at normal atmospheric pressure.  Her BP was 81/61 when I first came in.  Sharon (nurse) was changing and washing her hair.  She said Kimee had a seizure this morning, so they gave her Keppra (Levetinacetan) and Ativan.  She calmed down in 10 minutes.  She had a bit of a temp in the morning, too.
As far as I know, Keppra is a new drug for Kimee.  Neurology recommended it because it should have milder side effects than the Phenobarbital she usually gets for seizure prevention.  (Causes her to sleep a lot.)
Her pneumonia seems to be waning and she has been taken off precautions (no masks & gloves).
They changed her Shiley trach device to a Bavona with H₂O cuff (3cc) and are using Lubri-Fresh artificial tears for her eyes.
After all that fussing about changing to a Bavona back at NEPC, it’s done here without even a second thought.
When Sharon and an aide changed her bed linens, Kimee got goose-bumpy.  So I covered her up with the felt blanket from the foot of her bed.
I sat beside her with my hand on her head and finger combed her hair for over an hour.  Her stats went to 100% @ 101 bpm and 13 resp.
More relaxed?
Sharon said Neurology saw her this morning.  No results from the virus scan or the consult yet.  She will probably be here through Sunday.  They want to get her back to baseline before sending her back to NEPC.  They are all familiar with Dr. W___, her physician at NEPC.
I left TMC at 13:15.  Boarded the bus at 14:45.  Arrived Londonderry at 15:05.

TMC
2010/11/20 22:05-22:15 Saturday [TMC and Don]
I called TMC-PICU and talked to Kimee's nurse, Tiffany.  Kimee has had another good day respiratory wise.  She was off the vent from 11:00 to 19:00 today.  The pneumonia seems to be dissipating.
After the neurology consult yesterday it was decided to adjusted another one of her seizure drugs.  But, she had a seizure again today and they had to give her Ativan to control it.
Still haven’t gotten it right.
They had no estimate when she will be going home, so I said we would probably be coming down to visit tomorrow.

TMC
2010/11/21 12:20-14:15 Sunday [Ferne and Don]
We visited Kimee at Tuffs Medical Center.  I parked at the Wang Theater parking garage next door.  The doors between the parking lot and the Floating Hospital were all locked.  So we had to go down the stairs, across Washington Street and in the main entrance.  The stairs were a chore for Ferne.  We took the elevator up to the 6th floor and arrived at the PICU at 12:30.  Ferne remembered to stamp the parking ticket to get the discount.
Kimee's stats were 99% @ 99 bpm and 19 resp.  Her nurse, Janis, said she had worked on Kimee several years before in the surgical unit.  She pounded (chest PT) and suctioned her while we talked.
Janis said her repertory condition is better.  She is back to baseline, 12 hrs on and 12 hrs off the vent and she has had no temps.  They switched to oral antibiotics so they can give them to her through her G-tube and suspend the I-V.  It was still hooked up but not being used for meds.
Around 13:40-45, Dr. G___ (neurologist) and his assistant, Dr. O___ came by and talked about Kimee's condition.  They have concluded that her shuddering is not a true seizure.  But, she does still have real seizures.  They bumped her Keppra up some and will go up again today if she gets another one.
He was concerned about whether Dr. W___ was doing Botox blocks back at NEPC.
I said, “I don't remember when he did the last one, but we signed all the permissions for him to do it.  He visits NEPC every Tuesday and is monitoring her.”
They said that Botox is only good for about 4 months.
Janis started her Promote (with fiber) food at 55 cc/hr.  She gets a 40 cc water flush before and after feeding.  They do that by hand.
Ferne left a bag clearly marked ‘Traveling clothes’ with pants, shirt, socks and a new jacket for them to use when she goes back to NEPC.  That may be Monday or Tuesday.  We took home the clothes she arrived in.

TMC
2010/11/22 23:45-24:00 Monday [Don]
I couldn't sleep without knowing how Kimee was doing.  I called TMC-PICU and talked to Kimee's nurse (didn’t catch her name).
She said, “Kimee has had a good day.  No temps and on the vent 12/12 no problems.  But, according to her chart, she had a significant seizure early in the morning just after she came off the vent.  They adjusted her Keppra and wired her up for an EEG.  It’s running now.”
The team had been discussing sending her back to NEPC Monday or Tuesday, but something delayed her.
The Keppra has similar effects on her sleep as Phenobarbital... not as strong though for seizure prevention.
She said to call again after 10:00 tomorrow because the decision to send her home will be made by then.

TMC
2010/11/23 11:20-11:30 Tuesday [Don]
I called TMC-PICU and talked to Kimee's nurse.  Kimee had some seizure indications on the EEG they did last night.  It doesn’t correlate with her shaking, though.  They will adjust the Keppra some more but her other signs are baseline normal.  The team was speculating that a possible gall bladder problems may be causing her shaking.
“Is that because she’s in pain?” I asked.  “She can’t cry, you know.”
“They ordered some tests.  Whatever it is, we can fix it.”

NEPC
2010/11/23 12:50-12:55 Tuesday [Don]
I called "B-wing” to report Kimee's status.  They have not heard from TMC since a week ago Monday, but will call them.
I said, “They [TMC] are talking about a likely return tomorrow.  It is possible that Kimee’s seizures have changed and are just ‘different’ from before.  Smaller seizures, maybe more frequent.  They have figured out a new drug regimen for her using Keppra.”

TMC
2010/11/24 13:00-13:02 Wednesday [Don]
I called TMC-PICU to get an update on Kimee.  I asked if she was still there.  The receptionist said, “Yes, but her nurse was busy and will have to return your call.”
She took our number.

NEPC
2010/11/24 16:15-16:17 Wednesday [Ferne]
NEPC called and said Kimee returned about 15 minutes ago.  That may be why TMC didn't return Don’s call.

NEPC
2010/11/27 10:15-12:23 Saturday [Ferne and Don]
We visited Kimee at New England Pediatric Care.  Kimee was still in bed, asleep, stats: 95% @ 126 bpm on room air and cool mist.  Jessica, a new nurse from "A-wing," is assigned to her.  She said Kimee has been good all day but her HR is a bit high.
Minerva, an aide, got Kimee up and into her chair.  She said she worked at TMNH and remembers our daughter, Renee.
Her grandmother was a resident at MI and she hated it.
So did we.  That’s where Renee died.
Kimee started having troubles keeping her SpO₂ above 89%.
Oh, no, not again!
Jessica suctioned her and started a NEB treatment.  Before we left, her stats were steady, 91% @ 115 bpm.
They didn't even use the traveling clothes we left for her at TMC.  The felt blanket she had there came back with her, though.
We took the new coat and her wash home.



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