July 8, 2011
One month ago today, Josie had her bone flap in her skull
replaced. Time at the hospital is kind
of like the “Twilight Zone” – fast and slow at the same time. For the life of me, I can never remember what
day it is and sometimes even what month we are in. The one thing I do know is that we were
supposed to celebrate Josie’s birthday tomorrow with everyone and of course
that has been postponed since the birthday girl is still in the hospital. There have been some talk of the “H” word
(home) by her actual birthday – July 11 (Monday), but the doctor has made sure
we know that is only a “thought” at this time.
Meanwhile, as we continue to wait to go home, I can at least
catch all of you up to date on what has happened since the 4th of
July. Actually let me back up to just a
little before that date to give you some idea of how Josie ended up in the PCCU
(Pediatric Critical Care Unit). We had
been told last Friday that we might possibly go home over the weekend, if
Josie’s counts continued to go up – we had a little hope of this, since she
finally did have counts and it was a big deal.
We would have to give her shots at home, but they thought she would be
okay if things continued to progress.
Well during Saturday and Sunday, her counts went down and then up and
then down and then she needed transfusions, so we knew we were not getting out
until at least the following week. We
were still hopeful even with these setbacks to be home in time for the birthday
bash and even on Monday morning, the doctor thought maybe Wednesday or Thursday
for going home. It would be a crunch,
but we decided we could do it in order to still have her party. Josie had other ideas…
Monday afternoon – things for Josie turned terribly sour and
caused quite a commotion on the 9th floor. Josie spiked a high fever – not only did she
spike, but it came out of nowhere. She
had not had a fever since June 22 and she hadn’t even had a fever that morning. When she spiked, the nurse and I noticed
possible seizure activity, but it was not more than a blip and then she was
fine. They had just ordered blood
cultures because of the fever and the resident doctor was consulted, but the consensus
was to watch her and see if this fever went away as quickly as the others. Josie had been crying out in pain during this
time too and I was starting to get a little panic stricken with these
symptoms. I decided to get her calmed
down, laid her in bed and went to the bathroom so that I could come out and
just hold her while we waited this out.
When I went into the bathroom, she was calm, when I came out, I noticed
she was not responding to me and then I sat her up to try and get her make eye
contact with me and she was completely limp.
I quickly ran out to the nurse’s station and told them she wasn’t
responding. When the nurses came in they
found her in a seizure, her oxygen level had dipped extremely low and she was
turning blue. From that point on –
everything became a blur – they called a “code blue” and literally within
seconds, her room was filled with doctors, nurses, respiratory techs and
multiple other people. Josie’s seizure
meds were not up to her normal level and when someone has a high fever,
automatically the threshold for having seizures drops. The combination caused a severe seizure. They were able to stop it with a powerful
drug and then whisked her off to the PCCU, where we stayed for 2 nights until
they were comfortable that her seizures had stopped.
The fever this time had been brought on by a bacterial
infection that got into her blood. She
is now on an antibiotic for that infection and seems to be doing well – i.e. no
fevers for the past 48 hours. This
antibiotic is done through her IV and is the complicated reason we may or may
not go home. We have not had to access
her IV line at home other than to keep it clean and flushed. The antibiotic treatment is a couple weeks
long, so the doctors are mulling over if they want us to do it at home.
Yesterday Josie had a CT scan and a bone scan to check her
head to see if there was a secondary infection area where her bone flap was
replaced. Thankfully these scans came
back clear and negative for infection.
Praise God for that! The doctors
that ordered these scans wanted to make sure that they weren’t missing something
else. We so appreciate the
thoroughness!
At this point, that is the latest on Josie – we are
constantly hoping and praying for healing, recovery and getting home. A friend sent us this verse earlier this week
and it has stuck with me and sums up where I believe we are at: Psalm 119:81
“I am worn out waiting for your rescue, but I have put my hope in your
Word.”
Blessings,
Marc & Darcia
