Thursday, July 05, 2007

The Good, The Bad and The Ugly

Now that I'm a little more awake this morning, I can elaborate some. Since this whole thing started with my mom, I have purposefully stayed away from the hospital - probably more than I should - because I just find myself pissed off most the time. I have high expectations about how a patient and a patient's family are to be treated and I have a very low threshold for care that falls short of my expectations. I've already walked out of the hospital once rather than engage in confrontation with hospital staff over an issue. I got involved in the most recent issue because my sister called me in tears after my dad left the hospital in tears after an incident involving the young, immature, pompous intensivist (hereinafter referred to as the "YIPI") mentioned below. The incident had nothing to do with my mother's care and everything to do with an overinflated ego. I went directly from work to the hospital and requested a meeting with the YIPI. My sisters and I met with the YIPI for about a half hour and got absolutely no where because he couldn't set his ego aside long enough to listen to us. I cannot understand why this individual went into the practice of medicine. The end result is that I wrote a letter of complaint against the YIPI and delivered it to hospital administration first thing this morning. Likely, it will have no impact except that we have requested that the YIPI be removed from my mother's case. There is certain behavior that simply cannot be ignored and my entire family was on the same page in bringing the YIPI's unacceptable behavior to the attention of the hospital. Bottom line .... my mom needs to get the hell out of the hospital and get home. Unfortunately, she is not in any condition to do that yet. So, in the meantime .... I will continue to speak softly and carry a big stick :-)

Thanks for all your thoughts, prayers and well wishes.

Needless to say, it's been a tough couple of days. Unfortunately, not only have we had to deal with the news that my mom has brain cancer, we've had to deal with some very difficult hospital personnel as well. As someone who has spent a great deal of time around doctors and in hospitals - I thought I had experienced it all .... until yesterday. I'm not going to get into all the details, but the gist of it is that my father was treated very poorly by a young and pompous intensivist. Add to that the fact that my mother has received anything but "intensive" care in the intensive care unit (it's questionable whether she has received any care at all.) I will be delivering a written complaint to the President of the hospital first thing in the morning. This whole thing has been an absolute nightmare in so many ways.

We have been researching the various clinical trials for the type of brain tumor my mom has and we are looking into a trial that involves a vaccine that will target the tumor, in addition to receiving the normal standard of care involving radiation and chemotherapy. I will be placing a call to Columbia Presbyterian Medical Center in New York City tomorrow - one of only a handful of centers that are conducting this particular clinical trial - to see if my mom is a candidate and see what they need from us to determine that (she appears to meet the criteria on paper). The decision has to be made quickly because she can't be part of this clinical trial if she has already started radiation and chemo here.

On a MUCH happier note, my dear friend Peggy has been visiting with us since Sunday. Unfortunately, there hasn't been much visiting going on because I haven't been home much. Peg has been such a godsend during this time. Jack actually got real tears and started crying last night when Peggy told him "goodnight". He just loves her and she is so good to him. Peg has been great with Eric too - she has the patience of Job. Sadly, Peg leaves tomorrow because she has to get back to St. Louis to take care of her other patient. I haven't even had the chance to get any pictures of Peggy and Jack together. I hope to get some before Peggy leaves tomorrow.

I'm falling asleep as I type this, so I best get to bed. Have a great rest of the week my friends.


Melisande said...

Best of luck with the clinical trials. I'm sure your mom and dad will get better care after today! We'll continue to keep you in our prayers and thoughts.

julie worthington said...

How lucky your parents are to have a daughter like you. I know you'll get everyone involved that you can. Good luck with the clinical trials.
Glad you have a good friend like Peggy.

Sending lots of hugs across the pond.

Kari said...

Oh, Ann. My heart just breaks for you.

Anonymous said...

You and your family are in my thoughts and prayers Ann.
Good luck with the clinical trials. I hope that you mom is an approved candidate.

Anonymous said...

Ann, Im sosorry to see this about your mother and the (lck of) care she is receiving. please keep advocating for her and don't let the b@st*rds get you down. I will say many prayers for her improvement and your strength. Deb McKaughan

Anonymous said...

Lots of love and virtual hugs coming your way my friend.


Erica said...

Thank God you're there to protect your parents from the "caregivers" at the hospital. (What do the poor souls without medically savvy family members do???) Still sending lots of thoughts and prayers your way, hope things improve all the way around. Thanks for keeping us updated.