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