Friday, July 8, 2011

Fever & Seizures


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

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