With her Challenge Room teacher

With her 3rd Grade Teacher

About 100 kids lined the sidewalk as we pulled up!

MA-KEN-ZEE!  MA-KEN-ZEE!  MA-KEN-ZEE!

Yesterday Mackenzie was able to attend a few hours of her last day of school.  When we pulled-up to drop her off the entire 3rd grade was lined up with banners along the front sidewalk of the school chanting Ma-Ken-Zee! over and over.  It absolutely brought me to tears having been fully to hell and back and overcome with the power of miracles, the kindness of others and the quiet but constant loving support of family and friends!  I can't possibly think of a way to thank everyone that would equal what they have given us.

  

"WOW!  This doesn't look anything like the kid I was reading about in the chart!" one doctor proclaimed today as he entered the exam room.  Mackenzie flashed him a great big smile and waved.  Expecting the worst when he walked in, Dr. "Rehab" was truly stunned by Mackenzie.  

We had appointments with General Surgery, Neurology and Rehabilitation today.  General surgery is very pleased with how her abdomen is healing and doesn't ever want to see us again!!! We happily concur and sincerely wish Dr. Dean Potter (a Pediatric General Surgeon Fellow on Kenzie's case) very good luck as he moves on to Mayo Clinic in MN-hopefully my friends in Minnesota will NEVER need to meet him but if you do, you are in good sincerly caring hands!!  

Neurology is still stumped by her left leg spacticity.  They suggest some damage or infection in her spinal cord (not brain since it doesn't present in her left arm too) but this may very likely be a mystery that won't ever be solved, as the best diagnostic tool they have would be an MRI of her spinal cord.  With all the hardware in her back from her spinal fusion, an MRI will show beautiful streaks of light across film.  

Rehabilitation agrees with the suggestion from neurology about a spinal cord injury but adds the possibility that this could still be an infection that could resolve with the antibiotics... Rehab suggested surgery to release her achillies tendon which seems the least dramatic of all his suggestions otherwise a series of braces that would slowly stretch the tendon to release it and perhaps botox injections (painful and lengthy, very reminiscent of ancient foot binding yuck!)  However, when I showed him the position I was most successfully stretching her, he quickly backed off surgery and accused Mackenzie on holding out on him!  Surprised at how well she did stretch while laying down rather than in her wheelchair he believes bracing and therapy really may be the best option.  We will let the antibiotics run their course (as there still may be a slim chance the spacticity will resolve if it were an infection) and revisit in 6 weeks when her right leg cast is removed.

All things considered, recovering slowly doesn't completely suck!

Kenz had blood tests run yesterday and I'm happy to report that HOME is the best medicine!!!  Her levels were all either down or in the normal range!!!  We took the picc line out yesterday too, she was scratching the heck out of it because of the adhesive they use under it, as a result she has a nasty rash at the site.  She is on all oral meds and eating and drinking normally again (no feeding tube, which she promptly removed the day after we arrived home).  She'll be on some pretty strong antibiotics and antifungals for the next 6 weeks.  Infectious diseases still suspects her abscess is going to cause her trouble, however, general surgery is convinced it won't.  She also has a very stylish new purple cast which she will have for 6 weeks but she was casted for her new orthotic while we were switching casts.  

We brought Mackenzie home on Saturday afternoon. Although I'm exhausted, I have to say it was the best Mothers Day I've ever had! She still has 6 weeks of "big gun" antibiotics and antifungals to be given by IV but I can already see she is thriving at home.

There was no surgery. It feels a little bit like April Fools day around here. Much consulting was done with one another to come to the conclusion that the abscess in Kenzie's tummy was inconclusive as being the cause of her fevers. When they drained it on the 2nd, a culture was taken of the contents that never grew anything. The surgery that would have been done yesterday would have been incredibly invasive and leave her open to even more infection and at minimum of a week of recovery in the hospital. Our surgeon was willing to advise leaving it alone. However, Infectious Diseases really wanted it removed as they are of the belief that removing it would remove the question whether or not it is the cause of infection. Surgery also suggested removing her from her antibiotics to see what would happen as there is some concern the antibiotics are the cause of the fevers! I.D. wouldn't hear of this but they agreed to alter the antibiotics some. Bottom line, we go home in the morning and see what happens. I have received instruction on how to change sterile bandages on her gaping surgical wounds, flush her PICC line IV's, use the pump to give IV antibiotics and insert a new nasal feeding tube. Can't wait to just get her home!

It's her charming personality and those big blue eyes, nobody wants Mackenzie to go! Seems rather than discharge, another surgery is on the schedule! We were all set to walk out the door this morning however, when surgery caught wind of us leaving they ordered another CT scan. CT showed the abscess which was drained on the May 2nd has refilled. She has been having fevers on and off. And right now the brains (or more likely the egos) are determining how they should go about doing the surgery - should general surgery do it or the IR team (internal radiation) do it. Whom ever it is will likely catch momma's wrath if it isn't completed today! In the meantime we had a consultation with Ne urology. He felt it was evident that the spasticity in her right leg likely came from damage done while she was in cardiac arrest on Flight for Life. Unfortunately not much can be done but physical therapy but at least we'll know for sure.

I'd say its time for an update! Agreed? Sunday night kenzie spiked a fever that lasted through most of Monday morning. In an effort to cover all the bases to find the source of the fever the ortho team had to open the cast on her leg. They found no infection and beautifully healing incisions inside. We waited all day Monday for the placement of a pic line which likely drove the doctors nuts because Eric and I refused to have her stuck anymore for labs until the line was placed. When it finally was put in the labs showed a reduction in white blood cell counts and general reduction in any other bad news.

Doctors have put orders in to discharge her on Friday but I refuse to get excited yet!

We're in a quagmire tonight. Kenzie spiked a fever today. Which would be easy to fix if she weren't already on every antibiotic known to the medical community. Her NJ feeding tube also slid out of position back into her stomach which means another visit to floroscopy. She just knows I like to say the word floroscopy- seriously try to say it ten times fast!

Our little darling just keeps throwing curve balls. Good thing this is a teaching hospital- she never fails to impress in lectures!

On the agenda tomorrow is placement of a pic line since there is nowhere else to draw blood from her - she is bruised from her neck to her ankles

Hey - I may actually sleep tonight!  Yippee!  Kenzie had what in the larger scheme of things was a very minor surgery this evening.  All went well and the "uck" from her abscess is draining.  A culture was taken and we'll see what's next.  

Curious...the doctor from infectious diseases asked if Kenzie had been around reptiles at all...hmmmm we were at the CO Gator Farm 3 weeks ago on our way back from Spring Break...what could that mean now!?

Surgery tonight @ 6 pm to drain her abscess which showed no reduction. Fingers crossed it should be a simple one.

Mommy got a morning at Oxford Hotel Spa. Thank you Childrens Hospital!!!!

Bad night last night. New team of docs wanted to have another look at Kenzie's abscess. Along with that did some blood work. Her white count is very very high again. Waiting for results from 10pm ct scan. Looks like we're going to have another 7 day course of antibiotics at least and based on the ct scan another surgery to remove the abscess.