The first actually happened Saturday morning but I did not
write about it because I was so angry. There has been a group of surgical
residents who have come to check on my mom each morning during rounds. Most of
them are wonderful. Most. There was one who was extremely condescending every
day and dismissive of my mom's experience. I kind of sat by and watched it happen
every morning because later on each day, a surgeon who must oversee that group
would come in and I trusted his expertise.
As many of you know, my dad is a retired OB-GYN and despite
the fact that he and my mom are divorced, he has been kept in the loop
throughout all of this and I've asked him questions along the way to confirm
that he agrees with the treatment. It is interesting that after I shared with
him what was going on at hospital #1, he actually suggested EXACTLY what ended
up happening in terms of the surgery the next day when we came to hospital #2.
Over TEXT MESSAGES. From the OTHER SIDE OF THE COUNTRY. I still am blown away
by the incompetence of hospital #1 when my mom was right in front of them!
In addition to my dad, my brother is friends with an OB-GYN
here at hospital #2 (a strange and wonderful coincidence, I know!). She also
correctly suspected what was wrong while we were at hospital #1 and was
supportive and instrumental in our decision to leave hospital #1 against medical advice. Yes, another OB-GYN who did not see my mom in person was able
to determine what the problem was. Again, what is wrong with hospital #1?!?
So back to Saturday morning. This friend of my brother (who
I will now refer to as our family friend because she visited my mom in the
Trauma ICU and brought food and asked questions and was absolutely amazing to
us) questioned a few things they were doing for my mom, so I had these
questions to ask the residents when they came in on Saturday morning.
I've already described how this one in particular treated my
mom throughout the week, and Saturday was no different, even though my mom had
been through an insane ordeal the day before. I said I had a few clarifying
questions about what was happening, and immediately she became extremely
defensive. Rude, really. She questioned who this family friend was and stated that
OB-GYNs know nothing about bowels.
UMMMMM…excuse me?!? Two OB-GYNs were able to diagnose what
was wrong with my mom SIGHT UNSEEN. So clearly they DO know a thing or two! The fragile ego on this resident was embarrassing. To be so threatened by
questions?!? Utterly ridiculous!
As soon as she left the room, I called for the charge nurse
and I made it clear that I was very angry and that she was NOT going to treat my
mom any longer and that she was not even welcome in the room. LIVID is the only
word I can use to describe my emotions. I'm a very laid back, go-with-the-flow
person most of the time (or at least I try to be!). But when you mess with my
family, and especially my mom, who is in pain with a gaping wound in her
abdomen, you will see a very not nice side of me.
Another surgical resident came in to speak with us and
assured us that particular resident was removed from my mom's case and we would
not being seeing her again. I explained that while I might only be one person,
I am representing my entire family and that it is MY job to ask questions and
it is THEIR job to answer them. Frankly, the fact that my brothers and I have been
here around the clock has made the hospital staff's job easier because we are
the ones who help her in and out of bed, get her water, adjust her pillows,
settle her in the chair or bed, walk laps with her around the unit, cover her
with blankets, adjust the temperature, and handle all of the other countless little things
she needs. And we are excellent company for her as well, if I do say so myself!
This whole business with "excusing" that resident was
right about the time I was writing my previous blog post and my mom was
resting, so I decided against including that story until I had calmed down!
Everyone else here has been spectacular. Truly. But I have
learned in a very short that I have to speak up. As great as everyone here is,
the reality is that WE, her family, are the ones who will be taking care of her
after she is discharged and we have to not only understand, but also be
comfortable with the decisions being made. We are not morons – on the contrary,
my brothers and I are intelligent, thoughtful people, who are far more familiar
with medical language, procedures, medication, and so forth than most
non-medical people. So my takeaway is that it is my responsibility to speak up,
ask questions, and be my mom's advocate at all times. And to not be shy about
it or apologize for it. Period.
So, on to how my mom is doing…
Saturday was a pretty good day (after that terrible
morning). My two brothers, my sister, and my baby niece came to visit and to
give me a break. I had been at the hospital from dinner time on Wednesday until
lunch time on Saturday, and I was really suffering from dog withdrawal. As soon
as I got home, I had a bite to eat, and then I took Ginny upstairs to bed with
me (she is an expert-level napper...Maddy, not so much!). I slept for the rest of the afternoon, and
then after dinner C and J went back to the hospital (G had stayed there all
afternoon), while I hung our with my sister and niece. It was a nice break. C
and J got home late, and G spent the night at the hospital. At one point during
the evening, the nurses had to do something for my mom and they asked C, J, and
G to step outside for a few minutes. One nurse said to my mom, "Your sons
really love you!" and that made my mom's night.
On Sunday, J, R, and my niece visited my mom while I was
able to run a few errands to pick up some things she needed before going back
to the hospital to relieve G. At this point, we are a well-oiled machine! The
rest of Sunday was thankfully uneventful and my mom was feeling a little more
comfortable overall and the infection seemed to be improving.
On Monday morning, I had a meeting right down the street
from the hospital. I waited until all of the usual morning rounds were done and my
mom had eaten a little breakfast, and she assured me she would be fine while I
went to my meeting.
One thing that's been happening is I can be in this room and
not see another person for up to four hours at a time – just when my mom's medication
or vitals are due. Long stretches of time when it's just my mom and me. I'm not
complaining about that at all, but most of the time, we are left alone.
But if I leave the room? It's like a parade. If I go to the
cafeteria to get something to eat,
someone comes in the room. If I step out to call a family member,
someone comes in the room. EVERY.SINGLE.TIME. It's extremely frustrating.
Sometimes it's a nurse or tech with updates, sometimes it's doctors to exam the
wound and discuss treatment, and today it was the case manager to outline her
discharge plan! I mean, seriously! I was gone less than 15 minutes today when I
went downstairs for coffee!!! It has almost become a joke between my mom and
me.
So, yesterday, I should have known something big would
happen if I physically left the hospital.
While I was at my meeting, they put the wound vac on!!!
Ahhhhhh! WHY? WHY? WHY? My mom said it was very painful and I have enormous
guilt about not being here with her! I cannot understand why every time I
leave, something big happens! They also did a chest x-ray while I was at my
meeting because they were worried about her developing pneumonia (thankfully
the x-ray came back clear aside from the existing fibrosis). Two big things while I was gone for a few hours!
The rest of yesterday went well, and having the wound vac
actually seemed to make it a little easier for her to move around. C and G came to
visit last night and they thought she looked pretty great considering all she's
been through. We were feeling hopeful that maybe things were looking up.
She did not have the best night of sleep, but part of that is because people
are in and out of the room for various reasons.
As I mentioned, a case manager came in this morning and
explained that the wound care team would be in tomorrow to change wound vac and
then if they were able to secure the equipment for us to take home and arrange
a schedule for home nurse visits, we might be able to go home tomorrow.
Excellent news!
However, that did not remain a possibility for long, because one of the things they
do during the night is draw blood, and the results today showed an elevated white
blood cell count again. So just this afternoon, they've started her on two more antibiotics, meaning in addition to being on oxygen and the wound vac
machine, she now has IVs in both arms. And since they don't know what's causing the
white blood cell count elevation, she has to have another CT scan this evening.
How much more must she endure?!? Honestly!
 |
This pole is like an extra appendage
my mom has to drag around with her |
I keep telling myself that it can only get better...and sooner or later those words will prove true.
Again, thanks for your messages and kind words. We wouldn't
be able to do this without all of your support! We are so grateful for such loving
family and friends!
Happy Tails to you!
