To Hospice or not to Hospice.

Almost five years ago, my best friends, Joanne and Bill, gave birth to triplets three and a half months early. Bennet Matthew died within hours of birth. Kathryn Dora and Sophia Angelica kept fighting. Katy developed a near fatal infection to the bowel requiring surgery that removed the majority of her large intestine. Sophia developed multiple allergies, cripling colitis and colic. After 6 weeks, Sof came home while Miss Katy Bug spent another 4 weeks at Dupont Children's Hospital. In that time, I spent every free minute I had between Sof and Katy Bug, helping their poor exhausted parents juggle what noone should ever have to juggle. Katy Bug finally came home with an intravenous line and feeding tube to recieve nutrition. She needed both because her bowel could no longer absorb the nutrition it needed. Her stays at home were broken with long trips back to Dupont. After five months, Katy Bug required weekly blood transfusions and would scream in pain from the misshapen blood cells getting caught in her joints. Her many infections has caused her bone marrow to malfunction and she could not produce normal blood cells. She endured many doctors appointments with suggestions of bowel transplants and spleen removals (none of which could be done until at least 2 years of age) and many doctors telling her parents that she would suffer for 2 years but she wouldn't remember the pain. They gave her a 40% chance of surviving the surgerys. (I still cringe when I write this.) Her hematologist was the saving grace in this awful time. She introduced the idea of hospice and after much prayer and anquish, Bill and Joanne chose to bring Katy home. The gastroenterologist told Jo and Bill that he would never authorize hospice and that this was not a choice for parents but for the physicians. The hematologist warned them not to tell anyone what they were doing because someone would call children's services and intervene. THEIR CHILD WAS DYING IN FRONT OF THEIR EYES!! Katy was set up with hospice in the evening and the next morning suffered a massive seizure and never woke up again. She died that night with all the people who loved her the most around her.

(these pics are anywhere from 4mos old to 7mos old withe her parents...)

Now five years later, Joanne is a member of a Palliative care taskforce in Pennsylvania that is fighting for children to have the right to die comfortably and at home. Today in the Philadelphia Inquirer the task force was front page news:
Getting hospice took over six weeks. "I am not sure every parent could do what we did", Joanne said. "But it was the right choice for Katy. The last thing she saw was her family and her home."

People judged Jo and Bill for their choice, some had the audacity to say that they killed their child. They continue with counseling and do all they can to help Miss Sophia grow. She is mildly autistic with persistant developmental delays but a happy, loving child.

Why this post? To make aware others of the need for children to be allowed to die in peace and without pain in the surrounding of comfort.

Wordless Wednesday

How much for that shiny peice of Glass?

So several weeks ago, as I was driving into work, a giant 18 wheeler spit up a rock that put a pea sized nick in my windshield. When I went to the dealership to have my oil changed, I asked them to look at the nick and tell me whether I needed to have it filled. Oh No, they said. It is too small. That was Saturday.



Monday, it is 16 degrees as I leave the house, and I turn my heat on high. The heat hit the windshield and I watched the pin size dot spread it wings and hit either side of the car :(

I called the dealership about the warantee- windshield not included. Great, I think, my insurance deductible is 500$. I call the insurance- just as I thought, I pay the initial 500$ and the company bills the rest. The lady I spoke to was a little shirty and said to me- if it is even 500$. I am thinking at least 1000$, right?



Nope- 238$ and they come to you. Tomorrow, Mr Windshield is coming to my job and replacing my windshield in the parking lot of the Hospital.



HOW COOL IS THAT????????????

Clarification

The below post makes it seem that Shakespeare is not fun. On the contrary- We are starting with a Midsummer Night's Dream. I took Shakespeare for fun, and it is. However, for the next seven weeks everything is going to be overshadowed by the heavy reading for the Gospels. Heavy, yet in some ways very interesting but difficult to plow through.

The readings for Shakespeare are:

A Midsummer Night's Dream
The Merchant of Venice
Twelfth Night (it will be hard for me to remember that Viola is NOT the character from Shakespeare in Love)
Richard II
Henry V
Othello
King Lear
Hamlet
Macbeth

Shakespeare is being taught by a nun that reminds me of our first principle when we started at Lacordaire, Sister Michael Maurice (shudder..). However, she is the former head of the drama department and ADORES Shakespeare. I do suspect that she will not find humor in that I have always imagined a dog when Lady Macbeth says "out damn spot" :)

Rough Week

Classes started last week. Theology, as I predicted is going to be a bear. The reading is tedious and written by priests. (Just an FYI, priests as a rule do not write lightly...). We are looking at about 200 pages a week. Add to that Shakespeare, in which we are reading a play a week.
My pleasure reading, the Golden Compass, has fallen to the back of the pile and I am lucky if I get a page read before I am asleep.

Thursday, we got our first real snow of the season. 3 inches in 5 hours that then was topped with ice and finished with rain. My drive home that usually takes 40 minutes, took almost three hours. The roads were a mess. >:(

Then, yesterday, I broke down and took down the Christmas tree. The cat yelled and bit my ankles the entire time. (She didn't want it to come down either...) My apartment seems dull and drab.........

Misery

School starts tomorrow. My freedom is over. Shakespeare I know I will enjoy. Exploring the Gospels may be my downfall. It is not the topic, 12 years of Catholic school has ensured that I have a wealth of knowledge surrounding the gospels. However, it is an accelerated 7 week course and it would appear that the instructor has high expectations for the amount of info that can be covered in a limited amount of time. I am retiring to the couch to enjoy my last day of guilt free reading for pleasure........

Monday Mission

Dear little monster that lives in the apartment downstairs,

Little monster, our battle started in the spring when the warm weather came and you and your pimply, three hairs on his chin, boyfriend began your youthful fornifications in the bushes of our yard. I spoke directly to you again and again. I never went to your parents for fear they would kill you. I finally lost my temper with you when your friend decided that hiding in my unlocked car was fun.

I am thanking you, today, for the early morning wake up as my car alarm went off. Why would my car go off, you ask? Because your frolicking on the hood of my car was a little to rambunctious for the alarm to tolerate. When I came out on my porch at 1am and found the two of you hastily rearranging your clothing while still leaning on my bumper, I still managed not to call the cops or scream for your parental units. The next time I will.

I hope for your sake that you have invested in some protective measures, as I am unsure of your ability to care for yourself much less a helpless child.

Sincerely,
The exhausted woman from the second floor!

John

In November 2007, I had the pleasure of caring for a very special person. John is a 33 y.o male who has faced a lifetime of tragedy and, despite this, is one patient I will never forget. His full story can be found here: http://johnsvoice.net.

In a nutshell, at 17 John was diagnosed with a rare form of bone cancer. Several years later, the cancer had spread to his lungs. When he was 22, John was found to be in remission. That year, he went to a party with friends. Knowing he was too drunk to drive, he handed his car keys to a friend. That friend was twice the legal limit and wrapped the car around a tree. The friend ran and John is now a quadrapalegic. Rather than wallowing in his misfortune and lost opportunities, John has become a motivational speaker for teenagers and adults alike.

He has been a patient in the hospital since before Thanksgiving and I have never heard him complain, until now. Blatan bitch session, ahead.......
Some small minded nurse stood outside his room today and referred to him as a drug seeking addict. This gentleman has genuine pain for which he recieves pain medicines twice a day. I walked into his room this afternoon and he asked me to close the door. Once I did, he burst into tears and told me what had happened. All that he has worked for and achieved was diminished by some idiots comments. He didn't complain but he needed a familiar ear to listen to him, as well as a person who would be able to act on his behalf. He has lost so much already and now feels his reputaion has been tarnished by the comments of an ignoramous. Tomorrow he is being transferred to a physical rehab facility that will be his new home. His apartment has been condemmed and he can no longer live on his own.

Please visit his website, maybe by spreading his message, he will feel better when he sees how many new people have visited and been affected by his tale.......

Am I in Oz

The weather in PA today has been incredibly windy and cold. I think it was 20 degrees this morning when I left the house and did not get much warmer through the day. We are having 30mph winds with gust up to 50mph and have been since New Years Eve.

New Years Eve, my direct tv kept cutting out and rebooting itself. When, after 12 hours, my satellite signal had been restored, it seems that my dvr service had not. I noticed today that what should have been recorded had not and discovered that lack of dvr service. I was appalled, horrified, in sheer terror that my dvr was broken!

It is not broken and service has been restored but not without the requisite torture first....
I called directtv and then spent 45 minutes waiting for a customer service represenative. Of course, that was after being hung up on once after 25 minutes- I am not sure, but that could have been related to me screaming at the automated service to let me speak to the stupid man behind the curtain! (sadly, I kid you not....)

Wordless Wednesday with an older picture

2008 is Here...

The downfall of being a bedside nurse is the holiday commitment. This year was Thanksgiving and New Years. Working the day shift (7a-3p) largely restricted any New Year activity I might have wanted. As I was leaving the hospital yesterday afternoon, my mother called to ask if I was coming for New Years. She knew I was working but had hoped I would come for dinner. A 2 hour drive and the need to be back at the hospital at 7am kiboshed that plan. Instead, I went home to the furry beast and made the family's traditional New Year's eve dinner- italian sausage, provolone cheese, and tomato sauce on a portugese roll.

Princess P and I then watched Shakespeare in Love and were in bed by1015. I woke up when the Baptist Church let out at 130am and then when the alarm went off. Happy New Years! (I am getting so old)