Saturday, March 29, 2014

Oh, How Quickly Life Changes...

First we want to thank everyone for all your prayers and the various ways that you have reached out to us.  Despite the difficult week, we were very much so comforted by peace that only God can offer through the prayers of our wonderful church family and friends.  We have been truly blessed by the outpouring of love and support.  We cannot thank you all enough!
 
Now, an overview of our week.  I will be forever amazed at how quickly your life can change.  Sorry, it is so long!
  • Last Thursday, Bugs was a happy, healthy almost 3 year old. 
  • Friday morning she woke up complaining of a headache.  So, Mommy gave her some Tylenol and she went off to preschool.  We went to the library, visited Daddy at work, all in all a normal day. 
  • Saturday morning her headache was back, and she started vomiting.  At this point we just assumed she caught a stomach bug, so we settled in for a day of snuggles, Disney, PBS, and the bucket.  Mid-morning I took notice to the fact she was favoring her left arm, but at this point really didn't think anything of it.  Shortly after lunch time I noticed that her eyes were fluttering.  After a few minutes her forehead started twitching.  She fell asleep and her eyes and forehead continued to twitch.  Within a few more minutes her neck started to twitch.  We called the doctor, and were told to take her to the ER immediately.  She continued to have, what we found out later was a seizure, the entire trip into the hospital.  She had a CT scan at LGH shortly after we arrived, and not too long after that we received our first round of bad news.  We were told that they found a mass on Bug's brain, and that she needed to be transferred to Hershey's Children's Hospital.  Bug got to take her first (hopefully last!) ambulance ride.  That night at Hershey, we met with one of the neurosurgeon residents.  At this point we were told that the mass could be one of two things, a tumor, or an abscess.  We were told that they were leaning strongly toward a tumor, because she showed no signs of infection.  As you can imagine we were absolutely devastated.    
  •  Sunday morning she was sedated for an MRI.  After about 2-3 hours a team of neurosurgeons came into her room and explained to us that from what they saw, she had an infection in her brain that caused an abscess.  However, they couldn't be totally sure until they did surgery that it wasn't a tumor.  As the day went on we met with them a few different times as they showed us the very large abscess, and how it was pushing on the part of her brain that controls her left arm.  They explained the surgery, and how they were going to remove part of her skull to drain the infection.  Watching Daddy sign off on the papers for them to do the brain surgery was so painful.  I just wanted to tell them that there was no way they were going to do this to my baby, but I didn't have a choice.  Thankfully there were many blessings to be found this day.  The abscess was located at the top of her brain, so they wouldn't have to go through and possibly damage any brain tissue.  It was also in a part of her brain that is still largely undeveloped, so the amount of damage that was done is much less than it could have been. 
  • Monday morning Bug went in for her surgery.  After about 90 minutes her doctor came out and had nothing but great news to share with us.  They were able to get the abscess cleaned out, and she was doing great.  She also had a PICC line placed.  The PICC line is in her arm, and is a type of long term IV.   She will have the PICC line in place until May sometime.  She spent most of Monday sleeping, and we spent most of Monday rejoicing.  
  • Wednesday she started physical therapy.  The pressure on her brain caused some stroke-like symptoms on her left side.  First thing they did was try to get her to walk.  We were very happy to see her walking, with help.  She was dragging her left foot and not putting too much weight on her left leg, but she was walking!  We also found out that the bacteria that made its home in her brain is a very common everyday bacteria that is easily treated with antibiotics.
  • Thursday she had more physical therapy.  She walked some more, this time without dragging her foot.  After therapy was over, Daddy took her for a walk in the hallway, and she decided she had enough of this walking stuff... so she took off running.  PRAISE GOD!  She also met with an occupational therapist, who helped her with recognizing and engaging her left arm.  She had a baseline CT scan, that they will use over the next few weeks and months to check her progress.
  • Friday, just 2 days after her first shaky steps, she is running, jumping, dancing, and walking up and down the stairs.  She still has weakness in her left leg, but she has made AMAZING progress in the last two days!  She made so much progress that they decided to send us home with outpatient physical therapy, instead of spending another week in an inpatient rehab facility.  We were also told that the swelling in her brain has already shrunk beyond what they have expected.  We are now home and she is going to be doing the rest of her recovery here.

We would still appreciate prayers.  If you would keep her continued progress in prayer.  She still has very little movement in her left arm, and we have been told that she may never regain full movement/strength.  She also has about 5 or 6 weeks of antibiotics to go.  Bug is scared and nervous about anything dealing with medicine/doctors/nurses.  We pray that her anxiety will lessen as the days go on, and Mommy takes over most of her care.  
 
All in all, we feel amazingly blessed.  We believe that throughout the entire process that God has protected her and prevented "worst case scenarios."  He wrapped His arms around us and brought us strength and peace.  She is a miracle.  We also are honored to have been through something like this, that we might be able find new ways to minister to other people with sick kiddos.  
 
Thank you, again! 

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