Part 1: For those who don't know what we have been up to since September 4th this year!
On Sunday, September 4th I rubbed on Mel's head...noticed that something felt different. When I picked her up to look at it.....wow, there was her shunt tubing! Yep, her skin just was gone! Her shunt was exposed! That's NOT A GOOD thing at all! I packed up and headed to the ER...where we were met by her neurosurgical team....who immediately started the process of getting a new shunt AGAIN (as we just had this one replaced in March of 2011). With all the nurses saying, "wow, I've never seen that happen before!" It was great! Her fabulous Neurogeon, Dr. Timothy George, decided to pull the entire shunt completely out and put in an EVD (External Ventricular Device) for now. That is basically a shunt that is outside of her body....tube placed in her brain that comes out the top of her head and drains into a bag on the side of her bed. Then two days later the plan was to put in a whole new shunt.....they were just making sure that Mel didn't start with a fever or anything. She was doing well...then the morning of the surgery.....WHAM! Mel has an infection in her Central Nervous System. When they took out the old shunt two days prior, they cultured it...and sure enough it was Positive for Staph - Epi (a skin bug) had gotten in her shunt and is now in her brain...AWESOME! Things started to roll pretty quickly after that! Infectious Disease called in and seven days of IV antibiotics, central line (PICC), new shunt put off for another week! Then just two days until surgery for new shunt...her sterile EVD line comes unscrewed as the nurse and I are changing her pullup! WHAT???!!!! Yep, sterile fluid from her brain is now spilling our on to her bed, which means that "bugs" on her bed have now contaminated her line that goes straight into her brain! wow...really???? So we had to add another 3 days of IV antibiotics and hold off on the surgery! UUUGGGHHH! Then, Dr. George, decided that he can't wait anymore, he has to put in her new shunt in order to keep her from exposing her to anything else! So.....we got a new shunt! UNEVENTFUL, I might add. Then 12 days after first coming to the ER.....we are going home!!
Part 2: Home for 10 days, back at school for 6 days.....Mel comes home from school on Monday with a severe headache, vomitting, and fever! U have to be kidding....not even 2 weeks post-op! Since we had instructions to call if she gets a fever over 100.4......so I had to call! Guess what they told me! Go back to the ER! We stuck it out for a few hours at home....I wanted to make sure that this just wasn't a GI bug she picked up at school! So the next morning....she is not any better, still pretty sick, so we had no choice but to head back to the ER. After 8 hours there and lots of tests (blood cultures, CBC, etc., head CT, belly CT) they find that she has pyleonephritis (kidney infection) in both kidneys, including the non-functioning one. They admit Mel for some antibiotics with a stay of only a couple of days...so we thought. Then two days later...she is still running a high fever! We then get her blood culture and her urine culture results....she has an infection in her blood too! The same bug that is in her kidneys! Sooooo.......2 day stay has now turned into a probable course of 10 days on IV antibiotics. Another PICC line placed, two IV antibiotics, more tests! UUGGHHHH! Several more days of fever....keeping the doctors on their toes for sure! finally got fever free for 24 hours, then she spiked a fever. Fever hasn't come back now in 30 hours.....YAY, crossing our fingers. Then night before last we start seeing her blood pressure going up. It went as high as 140/83....for a nine year old 46 pound little, not a good thing! We had to give her meds to bring it down. So far so good...no other problems with that since.
Her doctors just keep laughing that every day Melanie brings a new challenge for them! I told them they have to look outside the box when it comes to taking care of her! One of them told us that we needed to write a book...."Spina Bifida according to Melanie". Sounds good! Profits may just help with her medical bills....lol.
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