Tonight's picture was taken in March of 2007. That March we took Mattie down to Key West, FL to spend spring break with Peter's parents. Mattie was basking in the sunshine. Notice even in this photo he was wearing the color orange. Mattie gravitated to bright and vibrant colors, which is why the Foundation's colors are orange, red, and yellow.
Quote of the day: You never have to change anything you got up in the middle of the night to write. ~ Saul Bellow
There are points along our trajectory where I sometimes pause and go back in time to former postings on the blog and reflect. I copied some of the reflections I posted back from March 30th and 31st (2009) below. To this day I frankly do not know how I was able to write so coherently on little to no sleep and while living under the most toxic of circumstances. I can still picture in my head Mattie's rooms, the chaos, and what our nights were like. Some things are just impossible to forget. I am very cognizant of the fact that I have a great deal of issues with the majority of physicians. One could ask...... where does this come from? Is it simply because doctors could not save Mattie's life? My answer to that would be NO! The answer is much more complex than that. I think cancer is much bigger than medicine itself, and any doctor who truly think he/she has control over cancer is kidding himself. My issue with doctors are usually related to their lack of psychosocial compassion and concern for patients. Or basically not even valuing this component of care as impacting the medicine. As I reflected upon the blog postings from 2009, even my example from those dates speak for themselves! Clearly not all physicians are like this, but when you find one that does value your psychosocial concerns and you as a person, YOU TAKE NOTICE. Mainly because this professional stands out as NOT part of the norm.
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March 30, 2009
There is a Vistaril shortage at Georgetown.
Vistaril is a type of antihistamine, but it is very effective as an anti-emetic
for Mattie. For weeks, I have told Mattie's doctors about my concerns about the
dwindling Vistaril supply at the Hospital. They assured me they would look into
it and if they couldn't find more they would come up with an alternative. I
want our readers to understand, as the nurses have educated me, that you want
to prevent Mattie from experiencing nausea. Because once nausea starts, it is
hard to hold it back and possibly prevent vomiting. So to me, Vistaril is vital
to ensure a certain level of comfort for Mattie through chemo. Thanks to
Mattie's blog, I have had the opportunity to meet a lovely family from
Pennsylvania. This family's daughter uses Vistaril and they let me know their
hospital has an adequate supply. I even alerted our doctors to this information.
So why Georgetown feels there is a national shortage is beyond me. We have even
found a supply at Duke. But again, even today, Georgetown's pharmacy claims
there is a national shortage. I have been addressing this issue for weeks with
Mattie's doctors, because I wanted to prevent exactly what we are dealing with
NOW. As of today, there was NO vistaril available for Mattie. I blew the roof.
After which, they did locate the last vial in the hospital, but it isn't enough
IV vistaril to carry Mattie threw the week. Because we have to conserve this
last vial, the doctors expect me to wake Mattie up periodically through the
night to give him oral vistaril. I am not sure why they don't see the problem
with this? I am sure any parent reading this blog gets it immediately! Mattie
needs rest. But no, instead I have to disturb his sleep to wake him up to take
oral medication. Mattie is not very complaint with oral medication, and I can
assure you I dread his 2am dosage! Mind you all of this could have been avoided
if the doctors and pharmacy were proactive and obtained the IV vistaril weeks
ago, when we brought this to their attention. I also want to mention that I did
not only mention this issue once to the doctors, I addressed it numerous times.
So often, that all the nurses on the floor knew about our issue. So tonight, I
feel this is just another example in a sea of examples, that illustrates my
disillusion with the medical community. Their decisions have real world
consequences on their patients and families. I personally would love to get
Mattie's doctors in our room at 2am to administer this oral medication. I would
bet if they had a couple of sobering reality checks, it may make them think
twice about placating parents and assuring us they are on top of our requests,
when it clearly is not a priority for them. My favorite line of reasoning today
is that Mattie is getting a lower dosage of Ifosfamide this week, so he most
likely won't get nauseous. This line of reasoning is based on what? We do not
know how Mattie will react, and I rather be prepared with the medication than
not have it at all.
March 31, 2009
As I assumed, Mattie was in no mood to take the oral vistaril at
2am today. I woke him up to use the bathroom at that time but he refused to
take the medication. I did stay up until 2am, because I felt compelled to see
how Mattie was doing and to potentially try to give him his oral medication.
Mattie was consistently up every two hours, and by the time Peter woke me up at
6:30am, I did not know what hit me. I sometimes wonder why hospital employees
can't understand why I am so tired. I almost wish in a way I could videotape my
life, because in so many ways it is hard to fathom what we deal with in one
day. We deal with Mattie's non-stop care and treatment, but being six, we are
also dealing with his constant need to play and inordinate amount of energy!
This morning, Mattie was exhausted and he stayed asleep until
around 11am. When he woke up he looked like he was dazed and wiped out. He did
eat his oatmeal, and then one of Linda's interns, Laura, came in to play a
"worm" game with Mattie. Mattie greeted Tricia, one of his favorite
HEM/ONC nurses, and had his vitals checked. Then he was off to the playroom.
Once he left his room today, he never looked back. He had an extremely busy
day.
While Mattie was sleeping this morning, I spoke to Tricia about
the Vistaril shortage. She told me the residents would come and talk with me
and they would have someone from pharmacy visit me. Well the seconds of waiting
turned into minutes, and then an hour. I am certainly patient on many fronts,
after all during check in days alone, I wait almost 10 hours for Mattie to
begin chemotherapy. But with issues such as following up on medications and
hospital personnel networking, I have very little patience. So I called Gail
Chisholm, my patient advocate. She gave me the name and phone number of the
head of pharmacy at the Hospital. To my surprise when I called Dr. Jeff Cox, he
picked up the phone and took the time to talk with me. He heard my concern and
was upset with the run around I was getting. He promised to investigate the
situation with Vistaril, and would get back to me in two hours. Guess what? Not
only did he call me back in two hours, but he went above and beyond the call of
duty. He started calling around other local hospitals, and connected with the
head of pharmacy at another hospital. He arranged for this other hospital to
give Mattie five vials of IV Vistaril. But he wasn't taking a chance on the
medication's delivery, and literally drove to the other hospital himself,
picked up and secured the medication for Mattie. Here is another example of
another outstanding department head at Georgetown Hospital. Dr. Cox is my hero
for the day. He listened, understood, and his actions matched his words! Now if
I could pick up the phone and get this Vistaril issue addressed in less than a
day, it makes you wonder why Mattie's doctors could not? Should I as the parent
have to take on this stress of securing medication? I think the answer should
be no. I think what builds trust for me in Mattie's doctors is a level of
commitment and advocacy for Mattie, and when I don't see it, I start
questioning everything. If they can't advocate for medication, what else on
earth aren't they advocating for? I wish I wasn't this suspicious but as a
person who has studied human behavior for some time, I can't help but see a
pattern developing.
This afternoon, Mattie played with Linda and Mary (a wonderful
volunteer, who you may recall was involved in our strolling ABBA hallway
performance last week). While Mattie was with them, I went to the HEM/ONC
parent support group. It was an interesting session, and it is always
enlightening to hear what others are dealing with and how their family is
adjusting. That term, "new normal" was used in the session. A term
that should be permanently removed from the cancer lexicon. There is NOTHING
normal about your child having cancer and each time I hear this propaganda, I
want to scream. I think this is a principle propagated by hospital personnel to
force us into compliance or acceptance. I am not sure a parent can ever truly
accept having a child with cancer, I frankly think it is more a process of
adjustment. I also find attending a support group rather challenging. It is
hard to step out of my need to help others and instead serve as a participant,
but none the less through helping or listening, I find I do feel better.
When I reconvened with Mattie, I found he was playing with
Brandon, Mattie's big buddy. Brandon had his three month scans today, and is
doing very well, thank goodness. Mattie had a great time with Brandon. They
played with model magic, and a submarine, which Linda gave Mattie. Brandon is
coming back to the hospital to spend more time with Mattie on Wednesday, which
will be lovely! Jey, Mattie's "big brother," also came to visit with
Mattie, and they started talking about Mattie's birthday, snakes, roaches, and
April fool's day! In fact, Jey joked about getting Mattie a roach farm for his
birthday. I got a huge chuckle out of that notion! I enjoyed chatting with
Brandon's mom and especially enjoyed her wonderful cookies she shared with us.
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Clearly the bush is beginning to bud.... a signal that spring is upon us finally.
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