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!