Until 4:30 pm last evening Kenzie had completely stumped the doctors. She had a CT scan of her sinuses at 2pm and sure enough, her sinuses were completely clogged with goop. Ordinarily a sinus infection wouldn't put one in the hospital with a temp of 104 and not even a drippy nose but it's Mackenzie! Luckily they had treated her with an effective anitbiotic the first evening we were there so she started showing progress. But, then hit her with an antifungal drug that wiped out all the good work the antibiotic had done causing her fever to rise again... so essentially had to start all over the second night with the antibiotic. Lessons learned: When entering the ER, state that she's"immuno-suppressed" we get a room right away! (having no spleen qualifies), Request a sinus CT first, they take 24 hours to schedule and the 3rd time will be the charm! Don't pass go (don't bother with the pediatrician's office, they won't find anything). And don't treat with an antifungal until there's good reason even if it takes 24hours to culture!
We are so happy to have her home with no fever before Christmas! Frankly, I thought Ainsley was about to burst with disappointment this being the 2nd Christmas break with Kenzie in the hospital, years of therapy will be in her future!

Merry Christmas to all and to all a good night!

Tis the season of Wonder and Mystery and Mackenzie loves to take full advantage of it!

School called at noon today, she had a fever of 99.6 so I picked her up. At 2 o'clock she was at 103.7 so I took her straight to childrens. When we arrived she had gone to 104. She's been tested for flu,strep,ear infections,urinary infection and had a belly x-ray all came back normal. Her white count is slightly elevated but not alarming. We're staying the night for sure. I'll know more in the morning I hope. They hit her with a dose of pretty strong antibiotic already and were about to send her home when she threw-up a little. Probably from the antibiotic (it was just 30 minutes after). So we're checking into the Chez Petit Medic for at least the night.

I'll update when there is anymore to report.

Kenzie has been doing really really well for the last month or so. It feels like she has progressed over a "pain hump" so that she is able to be more expressive, participate more comfortably in family activities and return to her beloved horseback riding. We are looking forward to a wonderful holiday season!!!

Back to School 2009!

Kenzie was feeling great this morning, no fever and all smiles so off to school she went (at least for a little while until we see her doctor for a follow-up appointment). For the first time she and her sister A are in the same school together. A very exciting morning for all!

Little B may be a little too familiar with medical procedures. A doctor in the making perhaps?

Kenzie had a good night last night, fever is still hovering between 99 and 100.5 but her white blood cell count is trending down towards normal. It started at 37,000 on Friday and is at 24,000 this morning. Her biggest concern is getting out of her room but since she is on droplet precautions they dont want her to leave. We never know what she will do next we are hopeful she will remain the same or better today and be allowed to go home this evening. Check back later, I seem to recalling saying this before! Around May 7th.

We checked into Children's tonight at 7 pm. Kenzie has been running a fever for a week and is leaving us with....get this....more questions than answers! No ear infection, no strep,no UTI, no digestive issues. Nothing, nada to give a clue what's going on other than very elevated white blood cell counts and a fever. CT scan didn't show an abscess as they expected but rather her Gall bladder may have rolled over on itself leaving a "second mass" on the films. Seems to not be a concern.hmmmm something tells me this may come back. Mental note: gall bladder. Chest x-ray seems clear for now.
Her fever is down tonight and she is sleeping soundly. In fact, I think she sleeps better in the hospital than she ever does at home. Now, that doesn't seem fair. We were finally admitted up to a room at 4:30 am. We will likely be here 48
hours for observation.
Going to sleep now.

Go Rockies!

Mackenzie had the opportunity yesterday to be a "Celebrity Bat Kid" for the Colorado Rockies! Yesterday afternoon we arrived at Coors Field where she got her own Bat Kid locker filled with a shirt, hat, Bat and Sharpie pen, and other goodies. From there they (with dad and 2 other bat kids) went down to the field where they were able to get their bat signed by some of the players followed by a tour of the inside of the ball field including the "baseball humidor"! After the tour, they returned to the field to be introduced during the pre-game show and appeared on the jumbotron! It was a great day! Kenzie was feeling great and Dad had fun too. The day was topped off by a win by the Colorado Rockies!!!

Bat Kid Lockers

Hug from A before Kenzie goes off on her adventure

A and mom did some exploring of our own.

Bat Signing

Kenzie's 5 Seconds of Fame!!!

Little Leggers

I've been told its time for an update! Well, 6 weeks have passed and Kenzie's major antibiotics and antifungals have run out. She transitioned to just a daily dose of amoxicillian which she will be on for a minimum of 2 years (since she no longer has a spleen to fight off little infections, those can turn into big infections fast!). She spiked a low grade fever for a few days during this transition which frankly scared the be jesus out of me and caused infectious diseases to give a phone call to see what was up (still having weekly blood draws) however her body adjusted and the next blood showed back to normal. I'm hoping I will become a little less sensitive and not have near panic attacks every tenth of a degree on the thermometer!

Her cast on her right leg has been removed. The incisions have healed nicely (although she's a little like a porcupine, there are little stitches coming through the skin right now that are very pokey, sorry too much information maybe?). She received her new orthotics on the same day which I'm very glad for because her right ankle has very little to support it and I'm afraid I'm going to break it (so much muscle was removed during the 4-compartment facsiotomy). Her right hip will likely need a second correction for dislocation it is causing her some pain.

Right now I'm so glad to have her home, she is going to summer school for a few hours each day for 3 weeks this summer which helps her return to normalcy, however, I still feel like she's a china doll on the edge of a high shelf that could fall to pieces at any moment!

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.

Movin' up! Kenzie was moved up to the 8th floor last evening away from the PICU. She stable and working our way to go home! Eric and I are busy training a whole new set of doctors and nurse about the way we do things around here! One of the PICU nurses highly recommended I go to nursing school.

Kenzie is starting to eat solid food a little bit more enthusiatically but by no means is she thanksgiving dinner ready! We have all summer to work on that. I am suggesting that she be discharged tomorrow with hopes that will mean we go home by Sunday. Keep your fingers crossed.

Although we were given a much more private room-no glass doors and a mountain view, the tv quits every 10 minutes and the worst thing of all, the clock is stuck on 930 which when you're in the hospital is just plain mean- time moves slow enough already!

It seems it may be time for an update?!

Kenzie came off the ventilator early Sunday morning. There were a great many delays none of which were her fault (staff shortages and many new patient arrivals). When she did finally have it removed, her breathing was better oxygen saturation was better and her overall comfort was greatly improved. So much so she has been a smiley giggly little girl again! The most difficult challenge right now is weaning her off all the narcotic pain meds she's been on. For the past few days she has been doing very well adjusting to the lower doses however today the fentanyl drip was turned off completely and she's showing some signs of discomfort. Still weaning down off precedex.

Although her primary request all through this has been to have a drink. Now that she is allowed to she doesn't want anything or is experiencing some discomfort from it (mommy however is not having a problem having a drink when she gets home every other night!). Keep in mind she still has two tubes running down the back of her throat. One leading to her stomach (this one should be removed today) and one running below her stomach where she is receiving her feedings. She only has 2 mores days of her antibiotics we are definitely on the home stretch!

The good news is there hasn't been much to report in the last 24 hrs! The better news is she is regaining her spunk, she's doing everything she can to remove her various tubes and "nose jewelry" (thank you Aunt Peggy that's still very funny to her) on her own (not good). She's making significant progress to move off the ventilator (again). Pressure Support Trials overnight were very good and her chest x-rays are coming back very clear! Assuming all goes well she'll be off the vent over the weekend sometime. She did however come back positive on a fungus in her stomach. Since she has been here she has been hit with every antibiotic and anti-fungal in the books so docs are not too worried about it. Her white blood cell count has also been falling. Humpty Dumpty is putting herself back together again!!!

Happy Birthday Grandpa Jim!

Kenzie had a CT scan this morning followed by a trip across the hall to floroscopy to place an NJ tube to replace the transpyloric that just never made it through the stomach as was thought yesterday. (Mommy knew it wasn't in the right place all along though!). Feeds have not begun until the mystery of the CT has been resolved. There is an abscess in her body cavity just outside her bladder. The question remains if it is made up of only fluid, stool, pus or any other infectious material (I know totally gross!) that could be easily drained, or fluid encased in tissue that can't just be drained along with the question of how to go about getting to it. Surgically, laproscopically or could radiology just be able to reach it and drain it.... This leaves us with even more unanswered questions than we started with morning! Hopefully in the bar where all the doctors are hanging out tonight they're coming up with some creative ideas.(Or at least playing for surgical privileges over a game of darts!) I swear some day I'm going to get my hands on the address of that bar!

We are encouraged today. Kenzie's chest x-ray is looking much clearer than yesterday so being back on the vent has been good. Her right lung was collapsing in spots but now seems to be filling again with the additional support. She began receiving feedings to the area below her stomach today through a transpyloric line (TP tube) hope this will increase her energy for less support on the ventilator when they begin to wean her down again. Her white blood cell count was a bit higher this morning we still await yesterday's cultures to determine the cause of this. Drains were removed from her right leg and the remaining one from her abdomen. Some tubes out some tubes in. We're breaking even on the day!

This morning's update is not so great...Kenzie was put back on the ventilator fearing pneumonia in her right lung.  To avoid further collapse of the lung the decision was made to vent again.  Additionally, her blood cell count numbers came back elevated due to infection, cultures are being grown to determine where the infection is.  Additional plasma will be given to provide support and a new central line was placed fearing the current line was perhaps the cause of infection.  I'm holding my breath through today, hoping tomorrow will be better.

Mackenzie was taken off the vent today! A relief. She has been full of herself today twisting and turning uncomfortable tangling her tubes in knots etc. She was put on a bipap to help her breathe because although her numbers were always good, she still needed some support to build up endurance again. We hope she'll be on room air by Monday.

No other news. Still no food or feeding to her bowels.

Today Kenzie started having "pressure support trials" to get her off the vent (still). Progress has been slow toward this goal. However, her blood/gas numbers before and after the pressure test were perfect this afternoon. She was quite tired and worn out though. Another trial will be done overnight tonight and perhaps the vent will come out tomorrow. promises (well actually they never promise anything but always raise expectation, having learned this lesson over and over, I won't be fooled again!).

An x-ray of her belly was done this am. Shows lots of air but staples seem to holding up. And get this, as a side note of the report, a right hip dislocation!!!!!!! Urgh! When will this poor child ever catch a break? Her orthopedist is coincidentally out of town! Generalist made an attempt to reset without success-comment from our specialist's assistant suggested it might require a surgical approach. Enough already!

On the very positive side of things, Kenzie's CK level was way down from yesterday (monitoring kidney health) and has fallen below the critical level. YEA! Much peeing has been done today. Whole new meaning to the term pee pee dance.

Her belly still bothers her filling with air and making her uncomfortable. She is getting much of her strength and fight back. She moves herself closer and closer to her restrained hand in order to "scratch" her nose. Of course we have already learned that lesson and know she's just trying to pull out her NG tube!

Hope for a restful night - love d

Not too much new to report. Today she'll have an NJ tube placed to feed her below her belly. Letting the staples scar in in her stomach. CT showed stomach was not leaking. RT foot looks awesome. Still challenges due to excess fluids.

Kenzie is a little agitated this morning. Sick of the tubes and
coughing a lot. She is having some contrast run right now it will take
about an hour and then she's going down for a CT scan to check her
stomach to be sure there are no leaks. If those scans come back okay
they will finally remove the vent. Certainly that will be a big relief
to her! I'll keep you posted

Very thrilled to post that Mackenzie has once again stunned the surgeons. This evening her right leg was cleaned and rinsed and was able to be closed after an original surgery on Saturday. Her foot remains very viable and has good pulse and circulation. This was. unexpected and truely a surprise to the doctors. Tomorrow we have scans to see if her belly is doing alright following the surgery last Thursday to close the hole in her stomach. Still many challenges ahead but glad to be through the immediate stage of repairs. Love to all darcy

As expected, today was a day of rest for Kenzie. We had some good news with the ortho doc earlier. Her foot is getting very good blood supply today and is nice and pink. Given this we may decide to forego the amputation for now and use an orthodic to support her leg. If it would increase her quality of life later, we will persue the amputation. Of course tomorrow is another day and when they get in the leg again things may change. More muscle may need to be removed etc. Today her numbers monitoring her kidney elevated slightly not great news. Fluids surrounding her heart and lungs were also higher. We hope after closing the surgical sites tomorrow will help to lower those levels and the team can move forward again. In anticipation of tomorrows surgery they decided not to take her off the ventilator but her values were reduced throughout the day.

For now.....

Today should be a day of rest and healing for Kenzie. She will have some "breathing challenges" to see if she is ready to come off the vent. Overnight the breathing support was lowered, this morning it will be lowered again followed by blood/gas draw and if her numbers are okay they will do challenges and eventually take her off late this afternoon/evening. All things considered she looks great seems comfortable, is using her talker effectively, is showing expression etc. On Thursday night we were told the sepsis could do major damage to her brain and we may not see our Mackenzie again, I'm so happy to say she is "all there" and doing great considering.

Monday evening update:
Kenzie had surgery this morning to close the incision sites from her 4 compartment fasciotomy done on Saturday. While the surgeon was inspecting the site he determined he had to remove much of the muscle that had been damaged and died from the reperfusion injury. Leaving the lower leg with very little muscle mass. Although her foot is receiving good blood flow, having such little muscle left in her calf will likely leave the foot and the leg not very viable for walking. On Wednesday of this week Mackenzie will go into surgery again (as they were still unable to close the surgery sites on her calf) and will likely have her lower leg amputated. The option of a prosthetic to a dangly and unsupported foot seems the best for her future.

This is of course only a side effect of the primary reason we wound up in the hospital last Thursday night which was a perforation in her stomach.

 Hi all who are waiting for an update - kenzie will be in the hospital for 2 weeks for sure hopefully no more but depends on complications. We nearly lost her Thursday night. Her stomach was repaired and her spleen was removed it ws damaged so badly. Because of the perforation in her stomach all the toxins were released into her body and she's a very sick kid. No idea why it happened. Additionally she had surgery yesterday on her right leg which sustained damage due to temporary blood loss and then reperfusion. The blood came back so fast it caused major swelling in the compartments surrounding the calf muscle. With nowhere to go they had to release the pressure surgically. 

All things considered, she shouldn't be alive right now, but she is Mackenzie and she is AWESOME! Doctors are stunned by how great her current condition is.

Thanx for all of your love and prayers. D

Christmas Morning!

Look at how straight her back is in this picture!

It was a very long trip to this day. We started all the pre-op appointments in September. I just opened a statement from the hospital on Friday for the surgery:

$236,000.00!

(Standing on my soap box for a moment)

If there is ever a vote in your community to end the Medicaid waiver wait list and to fully fund medicaid coverage for those adults and kids with disabilities please vote for it! Kenzie was removed from the wait list when she was 7 years old when a cigarette tax was passed. At the time she was number 436 on the list in our county of qualified children. That tax only allowed about 600 children through initially. If the cigarette tax hadn't passed we would likely still be on the list since she was put on it when she was 5 years old and it only moved about 200 spots per year! Even with our private insurance, much of the pre-op would not have been covered, such as the gait analysis which was so vital to determining whether or not to keep Kenzie's hips uninvolved in the surgery. Anyway, if you have the chance, please help the kiddos behind us.

Summary:

I don't miss waking up suddenly at 5:30 am with a surgeon standing over me. He didn't even bring me a cup a coffee once!

I do miss this magical concoction called a Milky Way Swirl Cococappuchino in the "nutrition" center on each floor.

Hoping I'll keep the stress-induced weight loss of 6 lbs. off! A great start toward the New Year's resolution goal.

So proud of Kenzie and how she has managed her pain and increased her movement even preferring walking in her walker to crawling! Yippee!

Still grateful for poopy diapers!

The recovery continues, 2009 is going to be a great year!