Continued from July 8, 2012
Today: Woke up after alarm went off but laid around for a while.
Cleaned the bathroom, paid special attention to disinfecting the tub because Jill needs a bath and I'm nervous about her foot getting infected
since the biospy site has not fully healed. My back is really sore and
I'm not sure what I did to aggravate it. Last night I went for a
leisurely bike ride. The girls stayed at home by themselves, I wanted to
see how they would do and thankfully they were both well behaved as the
TV was going. Yesterday Jill went to laser tag with her sister but had
to sit down as her foot started bothering her. It's nice that the
visiting nurse association is willing to drop meds off but it would
almost be easier to pick them up myself since our summer schedule
involves a lot of back and forth trips to and from summer school
While I like to think of myself as the forgiving sort, once certain
lines are crossed, I have a hard time going back to the way that things
were. This was the subject of a conversation this morning which I won't
get into but was upsetting. Last year we bought Jill a larger bike for
her birthday. This morning we took her younger sister out for a spin on
her bike while Jill was at her Harry Potter class. When she was in the
hospital she expressed regret that she was missing so many of her
sessions, the art therapist came to make a wand with her which helped a
little. Jill painted a mask and she watched a lot of TV in the hospital
so I was grateful that she had a creative outlet. We're thinking about
getting Jane a bigger bike for her birthday. I feel really bad but with
Jill being in the hospital we are really behind on a lot of things
including party planning for Jane's birthday - these things always come
up faster than I think they are.
Tomorrow Jill has two appointments, one with her regular
pediatrician and another to visit a pediatrician we might be switching
to. While I really like the first pediatrician I want someone who
practices functional medicine as well as traditional. From reading the
new doctor's bio I'm hoping that I have found someone whose lifestyle
and philosophy is in line with what I believe. The doctor I wanted to
get the girls into is not accepting new patients but I am hoping that
this woman will be a good fit for our family. Jill has not been eating
well so she's lost a few pounds. She went to both of her classes today
and I think she overdid it. I made both of the girls lie down after
lunch. Jane slept for a bit but I think Jill was up the entire time.
Jill's inflammatory markers are still elevated. That is a cause for
concern even though I know that a bone infection is difficult to treat.
Typically the infection is caused by one of three bugs, two of which are
staph and strep. Cultures for one of
the three can take up to two weeks to grow so we may have some waiting
time before we can find out what is causing the infection. We've settled
into something of a routine. Jill has five doses of IV antibiotics over
the course of a twenty-four hour period. One is every twelve hours and
the other is every eight. It isn't difficult to administer but the one
dose takes about an hour to complete so there's a fair amount of waiting
around we have to do. Fortunately the grenade style is portable so she
can walk around instead of being confined to one spot.
I'm trying to stay optimistic and positive and focused while getting
things done around the house but it is really hard. I'm tired, there's
more paperwork to deal with, the meds were supposed to be delivered this
afternoon and they still haven't arrived which is making me fidgety.
I'm glad I got the bathroom done, Jill ate a salad and part of a burger
for lunch. She's supposed to have as much protein as possible but she
didn't want an egg for breakfast and I decided not to push it. The
pharmacist said that whatever we can get into her is good. Her appetite
was okay at lunch but a handful of apple slices with some peanut butter
should not have held her until one o'clock which is when we had lunch. I
did my yoga DVD but my back doesn't seem better, wish me luck going
forward, it looks like I'll be needing it.
Update 1: I went to give Jill her meds and found that the clamp on her PICC line was already open. After a series of calls where I received inaccurate and no information I finally spoke to a nurse who said that as long as the line was flushing properly we didn't need to worry about it. Still no results on the biopsy so we are still not sure exactly what is going on with the infection. Really frustrated with how Children's Hospital handled that call. Chart notes should indicate who placed a PICC line and eight phone calls to six different numbers is uncool in a potential emergency situation. Fortunately now I know who to call if I have any further questions.
Update 2: Home health dropped the meds off at six, just in time for a seven o'clock dose. Most of what we ordered was in there but no Tegaderm for her foot so now we have to figure out what to do to try and keep the site covered. Jill is upset that she is missing t-shirt decorating day at her Harry Potter class, she flipped out and said she wasn't going to go to the appointment tomorrow. Kids are watching TV and my back is still jacked. So ready for a stiff drink and a couple of hardcore painkillers.