Saturday, June 29, 2013

Back to Children's National for Cole

It has been a crazy month since my last post.  I will give a couple quick updates about the fun things we've been doing and then an update on the scare we had this week with Cole.

First, Reagan completed her second year of preschool and is very disappointed not to be going to kindergarten with the new friends she made in her class.  She was sad to say good-bye to Ms. Carolann but we know we'll see a lot of her next year since Cole will be in her classroom.

We took the kids to the Air and Space Museum at Udvar Hazy at the beginning of June.  They had a great time flying a small plane and running around on all the ramps.  We look forward to the day we can go back when they have a little longer attention span and they can get a little more out of it!



We also went to Great Wolf Lodge (indoor water park) and Busch Gardens last weekend.  We had a great time with the Coullahan's, Solomon's, Opett's and Golino's.  It was our first time to Great Wolf Lodge and my first time to Busch Gardens.  The kids had a lot of fun playing in the water, listening to the Wolf reading a bedtime story, making a tie-died pillow case and meeting Elmo and his friends.  Reagan's favorite part of the trip was riding the roller coaster.  I think we're in trouble !



After a fun weekend we had to hurry home so I could head to California for work.  I have been working a lot of hours in the last few weeks.  I officially rolled off the Comcast project and have been very busy finalizing the content for an executive forum I am developing for Boeing.  I had the opportunity to tour the Boeing C-17 manufacturing plant - WoW.  I am proud to be an American.   Unfortunately no pictures were allowed.  Soon after I arrived in California (for a two day trip) I called home to see how Johnny and my nieces were doing with the kids and found out Cole had thrown up all over Johnny while they were shopping at Dick's.  After getting him home and cleaned up, he threw up again.  Cole was sick again at 4am on Thursday morning and was agitated, crying, sticking his fingers in his ears and saying that his head hurt.  As you probably remember, vomiting, irritability and head aches are the symptoms of a shunt malfunction.  He was also running a fever of 101.  A fever is not necessarily a symptom of a shunt malfunction, unless of course the shunt is leaking somewhere inside his body and is infected.  Long story short, Johnny called the neurologist Thursday morning and she recommended he take Cole to Children's Hospital to be seen.

After being evaluated he had a chest and head x-ray to verify there wasn't a break in the catheter (tubing).  Luckily it was intact.  Next they tried to do a "quick MRI".  The MRI is preferred since it doesn't expose Cole to radiation.  Unfortunately the loud whirring noise completely sent him over the edge and he wasn't able to hold still long enough to get a clear image.  They decided to do a CT instead and although he was still very difficult to restrain, they taped down his head and were able to get the picture they needed.  Unfortunately, the ER doc didn't have access to his previous scans at the hospital since they were taken at INOVA Children's Hospital in Fairfax (even though his neuro from Children's National is able to see them from his office).  So even though his ventricles looked "normal",  they were "teeny tiny" at his last scan in February.  Therefore, with no comparison there was really nothing to rule out an issue with the shunt.  However, the doctor did find slight redness in his ears so he decided to send Cole home with Amoxicillan to treat a possible ear infection and chalk the throwing up to an unexplained virus.  So after an exhausting 9 hours they headed home hopeful to get a decent night's sleep and that the medicine would start to make Cole feel a little better.

After a helpless 6 hours waiting for my delayed flight in Long Beach Thursday night I finally got home at 8am on Friday morning.  Cole had thrown up again right before I got home and hadn't eaten more than a few goldfish in the last 24 hours.  Luckily his fever had come down and my nieces felt pretty confident that he had thrown up because he had just swallowed a lot of water very quickly.  Given he was so dehydrated from the previous day, they were reluctant to tell him no.  I called the on-call nurse to request the neuro compare the scans and we got a call back later Friday with confirmation that although his ventricles are larger, they weren't large enough to cause the vomiting.  After a fearful few days, he is now running around again and feeling much better.

We can't thank our friends and family enough for the prayers, emails and text messages over the last few days.  As Johnny said on his FaceBook page, your friends normally stand by your side when you're having a good time..but your TRUE friends are the ones who stand by your side when you're having a bad time.  It has been another bad time at the Bischoff's and we thank you all for your support, prayers and warm wishes!

While we would like to think we can go back to "normal" now, we got the call Friday afternoon that Reagan's procedure time was set to July 2nd at 8am with a 6am arrival time.  So we will head out to Children's National again at 5am on Tuesday for Reagan to have Botox injections in her wrist and ankle.  We are hopeful these injections (I think about 12) will loosen the muscles and increase her range of motion.

We have a very busy July with two weeks of camp for Reagan - one week of riding camp and one week of constraint camp with her OT at Children's Therapy Center.  I will also have a trip to Seattle to pilot the course I am developing and we have an appointment with Reagan's neurologist.  We are also hoping to squeeze some fun in there somewhere!