Continued from July 5, 2012:
Great news - we were able to bring Jill home today. Naturally it took
much longer than we thought it was going to for her discharge paperwork
to be signed. The visiting nurse called to let us know that she needed
to be called when we left. She drove an hour and a half to come see us
on a Saturday and I am thoroughly exhausted from her training,
questions, and the general craziness of these past few days. Jill has
not lost much weight but she is already underweight so that is a concern
of ours and theirs. Weekly labs will need to be drawn but no one is
sure exactly when the next one is scheduled for so we have to call and
get that straightened out. Jill's medication arrived at the hospital on
ice. Another bag of supplies arrived with it and I suppose this is
incredibly funny to some but it was pretty sad to learn that what I
thought was maybe enough to get us through a couple weeks was actually
only two or three days worth of meds and saline.
The biopsy site, while small, needs to be wrapped. Jill has a very
sweaty foot and this is ridiculous but nothing will stick to the site
other than these expensive tegaderm patches which is another thing we
will need to be ordering. Meds are taking up space in our fridge, one of
the antibiotics comes in this good sized syringe, the other is a
grenade style pouch that takes much longer but has its own administering
system. These need to be delivered every eight and twelve hours
respectively, the nurse drew out a sample schedule for us but already I
can see hitches in the system because Jill had been planning on taking a
summer theater class in downtown Milwaukee and I don't think we can
make the medication last for the entire time she will be down there.
Previously bone infections were thought to be incurable. When we were
speaking with a pediatrician she said that eventually someone would have
taken Jill in had I not. The bone can liquify if left untreated, that
was said casually but was a good reminder that despite her otherwise
good health this is a fairly serious medical condition we're dealing
with.
While part of me realizes that we're going to get through this, right
now I am completely overwhelmed, tired beyond belief, and wondering how
I am going to cope with these extra demands when I had trouble getting
through a normal day otherwise. Laundry is piled up in the basement, we
picked up a few groceries on our way through town but we'll have to go
grocery shopping and I really need to get rid of the food that we
thought we were going to eat but didn't since we have been practically
living at the hospital with Jill. Apart from the medical expenses, we
spent a lot of money at the small cafe downstairs, gas to get to and
from the hospital adds up and I'm dreading trying to figure out the
financial ramifications of this past five days. Some time ago I signed
up for an adult swim class. I'm going to stay in the class despite the
cost and time away from home because I need a break and think this will
be good for me. My sister wants the girls to do a fun run, I don't have
the money but it sounds like fun and I guess I'm slightly bitter about
not being able to go on that with her.
I haven't been writing as much as I used to, for several reasons: I
spend too much time online and am not disciplined about getting off when
I should. I've been researching a character and that has taken me down
different rabbit holes, and I've been thinking about ways to balance
family life and my personal well being. Whether I get divorced or not I
am going to have to deal with Jill and Jane's father. I need some coping
mechanisms to manage and in the past I've turned to online sources
which are not a replacement for a healthy relationship. I've been more
into biking lately, I would like to keep that up and I think that
staying with yoga, I haven't been doing that as much lately for some
obvious reasons but I want to be outside despite the heat which really
doesn't affect me much. I love the heat, the other day I took a bike
ride, one thermometer said 99 and the other said 103 but when I got
home, I felt amazing. Warmth helps minimize the pain in my joints and I
like the idea of getting a natural source of Vitamin D as long as I
can keep up with my fluids which is always a challenge for me.
The other day I wrote a one paragraph daylog. I want to do more of
that, recap my day so I remember what happened and when. So many things
that I have wanted to remember are no longer memories of mine so this is
my attempt to preserve whatever childhood days my children have left. I
also want to go back and see progress or regresssion. I haven't lost or
gained weight so far despite eating some sketchy things recently. I've
had my first green juice since I got back and going forward I want my
children to be eating at least one green salad a day. I want to set
minimum fluid requirements for them, dehydration is an issue for my
girls, and I want people to be aware of how damaging certain acceptable
items like candy and soda are for growing bodies. As rough as this
experience has been, it could have been so much worse. I am so thankful
that this was caught early and treatment is available even though the
thought of powerful antibiotics for this period of time is scaring me,
especially after hearing some of the side effects which are not
pleasant.
Many people have sent messages and I appreciate hearing from others,
even if it is a simple - hope she gets better soon. My daughter is a
fighter, she's been that way since the day she arrived ahead of schedule
and small for her age. She could hold her head up the day she was born
and I am really proud of the way she's been handling the pain and what
seems like constant meds. Right now her temp is 99.3 degrees. That is
high for her since she runs about a degree lower than the standard 98.6.
She ate a few bites of a burger for lunch and I'm concerned about her
lack of appetite. Bacon is off of her menu since that was one of the
foods she couldn't keep down and no one needs bacon in their lives but
it was a high calorie food that pairs well with a lot of other things.
I've done a lot of thinking lately, I've prayed for her and other have
too. I don't know what the next step is, right now I think we all need
time to settle down and get into a new routine. Hopefully I will be more
emotionally stable soon, and please don't laugh too hard, because while
not probable, it could theoretically happen.
Continued on July 8, 2012