Ignorance and fear:

Barb and Kate have been at the Mayo Clinic in Rochester MN since Tuesday January 13th for behavioral evaluation and an extended EEG study. The goal is to identify the origin of the seizure activity in her brain and identify an informed course of care.

After living in the observation lab (hospital room) at St Mary Hospital (part of Mayo) they have collected enough seizure information data to make a recommendation for a surgical option. In order to accelerate the information gathering, Kate’s seizure medication was reduced by 50% the second day of the study and reduced again the next day.

The smaller seizures increased in frequency and intensity over the three day period, Kate has been miserable throughout the process. Along with the seizures she experiences periods of intense anxiety and anger. The “spike” activity recorded during these periods has confirmed the origin of the seizure activity. The larger “Partial Complex” seizures were not captured on EEG, this was an initial goal of the study, to insure a consistent source that might be addressed with a surgical solution.

Today, Monday January 19th (Paetra’s Birthday) the doctors are re-introducing Kate’s combination of seizure medications at the full dose to provide her some relief from the continuous seizures of the last five days. The neurologist Dr Wirrell, is satisfied with not pursuing the triggering of a larger seizure (Partial Complex) in the interest of recording it. She is satisfied with the data collected to this point and feels the medical team guiding Kate’s care can make an informed decision / recommendation with what has been collected to this point.

The prospect of the surgical procedure scares me in a deep way, at this point and I am struggling to develop a set of knowledge and coping skills to insulate myself. Without them I run the risk of falling apart at any point in the day when the thought of it takes me over. Ignorance and fear are my opponents.

Barb and Kate will hopefully be traveling home to Whitefish on Tuesday or Wednesday to rest and recover from a tough week in the hospital. Paetra and Isabelle are scheduled to compete in an alpine ski race in Big Sky Montana this weekend… will be a stretch to make it all happen. Understandable they are scarred for Kate and want the girls home soon, but also disappointed at the prospect of missing the race they have been training for since early December.

On the 8th day

Optimistic about about being released tomorrow, December 24th from Kalispell Regional Medical Center. The surgeons looking after me are pleased with the progress but not not completely satisfied that the hole is healing.

Today brought an adjustment to the plan. Rather than testing the progress by clamping the chest tube, I was returned to suction until 2am tomorrow. An X-ray will follow to see if any of the “pneumo” remains.

Staying positive with a steady stream of visitors, I think I’ve done more socializing in the last 8 days than in the prior month.

Not so air tight

The rumpled mess on the left side of this image is my right lung as it looked on Wednesday morning, down to 20% it original volume.

“Spontaneous Pneumothorax” is now part of my vocabulary.

After two days of suction to keep my chest cavity / lung in proper shape, Dr Gunlickson ( surgeon) turned off the suction to test the lungs ability to hold air. After 18 hours my lung has lost a bit of volume, but there is no hole visible on the CT scan.

Christmas is five days away, Isabelle asked if I’ll be home by then… good question at this point.

Air tight

Collapsed lung on Tuesday December 16th.
Chest tube inserted on Wed Dec 17th.
The waiting game takes over two nights in the hospital hooked up to suction to keep my right lung inflated.

Wonderful visits with friends and family that slows down the pace of the holiday season. Great conversations with some favorite people.

Friday December 19th:
We are sorting out a path. The CT scan this morning did not show any holes, that’s good except that the machine I was hooked up to showed that I was not “holding air”. So we have been running gradual tests to see what’s going on.

they unplugged the suction machine that was keeping my lung inflated. X-rays at noon and 2pm to see how the lung was holding up. A few minutes ago they clamped the chest hose off to simulate its removal, we will check with an X-ray at 6pm to see if my lung stays inflated.

It’s like a seventh grade science fair project.

Varsity Level

Reviewing the notes from last week at the Mayo Clinic in Rochester MN. Kate had completed a one hour EEG and we meet with her neurologist Dr Elaine Wirrell for the second time.

After education Barb and I about what she was seeing on the EEG, Dr Wirrell narrowed the conversation down to two key points:

DIAGNOSES
#1 Intractable focal epilepsy
#2 Continuous spike wave in sleep

This is remarkable for us. We worked with medical professionals from Tampa Florida to Seattle Washington without gaining ground on a cause. Kate has had over 30 hours of EEG / video recordings collected in the last two years and no one has been able to connect the dots until now. The folks at Mayo identified a significant issue after one hour of observation. Barb and I were floored by the efficiency and competence.

We will return to Mayo Clinic next month for a more focused monitoring to confirm the origin of the “spikes” seen in Kate’s EEG. The monitoring will include “inducing” seizures by dialing back her medication. Intellectually I understand this approach…

Perception of Control

After five days of gradually increasing anxiety, causing sleepless nights, loss of appetite, and vomiting Kate had a generalized seizure that required a dose of Valium to break through.

Kate’s doctors have consistently reinforced with us the role that fatigue plays with regard to the onset of seizures. Today’s seizure fits the model / trend of physical and mental fatigue as a contributing factor. There were smaller seizures lasting two to three minutes starting last weekend. Her inability to sleep at night seems to come from anxiety or anxiousness that wakes her up around the same time each night (2am). In the early days of the cycle Kate will go back to sleep at 5am or 6am for an hour or two. When the cycle is at its worst, five to six days into it, she will not go back to sleep at all. Staying up from 2am until a nap mid day. A four year old should not be able to get by on 6 hours of sleep… and she doesn’t. Her behavior turns dark and occasionally violent with her sisters and her mother, lashing out, hitting scratching, punching, unprovoked.

The seizure today was unsettling and frustrating, reinforcing the sense that we have no control over her well being. In an effort to create more understanding we are traveling to the Mayo Clinic in Rochester MN December 3rd.

Kate is currently resting at home with us, safe but exhausted, sleeping off the effects of the Valium and hopefully rebuilding her strength.

iPhone 4S Display Assembly Replacement

My Problem

My opportunity to learn about the inside of an iPhone has user error written all over it, one poor decision after the next.

1) The “phone” pocket in my shorts was to shallow… and I knew it.

2) The phone did not have a case on it.

3) I had dropped the phone out of the same pair of shorts multiple times… never learned my lesson… until now.

My display screen was broken when the phone was dropped and the metal band around the edge of the phone contacted a rock and bent into the screen. This created the opportunity for me to revert back to a 4th grade habit of taking everything apart.

My Fix

Thanks to the great step by step directions on ifixit, the parts and tools also available on ifixit, the display replacement went perfectly.

My Advice

I was amazed that it worked based on a complete lack of prior experience with tiny electronics. The best advice I would offer to inexperienced folks like me, do not be intimidated by the opportunity and pay very close attention to the instructions. Take your time, I moved very slowly, taking almost two hours to complete the process Ifixit gives the task a 1 hour estimate for comparison.

Small but significant detail, I used a non-static foam to place all the parts on, labeling each step and the specific part / size of screw etc to make the reassembly easier.

Kate: 09/11/2014

Flushed at bedtime

Low level anxiety about thunderstorms
wanted to tell mom she may get up in the middle of the night
generally in good spirits, up and down before dinner
was being mean and screaming before I got home from work, made Isabelle terribly upset
barb feels like she is approaching a seizure in the next 36 hours… I hope she is wrong.

Day at the Circus

Busy day yesterday at work, conducted a dog a and pony show for an hour to an international audience. Covering the selection, evaluation process for a software platform we are recommending.

Kind of a grown up day for me.

Amtrak: the waiting game

Stopped, between Williston ND and Minot ND close to Berthold…we continue to wait. Train works fine, no conflicts with BNSF for track time. We are waiting on a replacement crew to be driven by car, out to the train from Minot.

An appropriate metaphor for the state of passenger rail in the US, with no outside impediments, amtrak is it’s own worst enemy. Creating delays through failed policy making.

Up to this moment, the Empire Builder had been moving along well. Due to a series of delays from freight traffic, the current crew reached their 12 hour work day limit 20 miles short of the destination. In a move unique to the rail road industry, they just stop the train and call for the new crew to be driven out to meet the now stopped train. Amazing.

The smokers on this train are the most considerable group, they have not had a chance to legally smoke for over three hours. I don’t know what it’s like to need a cigarette, but I have seen the results when folks are made to wait for one.

To hell with customers and the delivery of services paid in advance, Amtrak employees fail to plan for these inevitabilities. Loosing the priority to freight, means passenger rail stops and waits any time there is a shared interest in the same piece of track.

At this point of waiting, we could have walked the final miles to Minot faster.

The state of passenger rail travel in the United States has reached a new low.

Cooke Book

three is the magic number