Khloe

Dear Family and Friends,

We thought this would be the quickest way to get information to you on how Khloe is doing and though I am not very computer savy, Kaitlin is and we have her to thank for setting up this site.

So, from the beginning...Last Monday the 2nd Khloe came home from school and mentioned she had had some back and shoulder pain that day but was feeling fine . On Tuesday she had a follo-up appt at Primary Children's for her feeding tube which went well and then she and I went out to lunch and then to the mall. We had just started our shopping when she needed to sit down because of feeling out of breath. Oven the next 30 minutes our shopping consisted of Khloe moving from bench to bench because of breathlessness so we cut things short and went home where Khloe slept for the afternoon, waking for dinner and then going back to bed. During the night she was awake 3 times because of breathlessness and chest pain so first thing Wednesday morning we were at our pediatricians, who, after consulting with Khloe's dr at Primary sent us down to their ER. After blood work showed a heart enzyme level being very high they did an echocardiagram which showed her heart only contracting/pumping out at 17%. During all this Khloe was getting weaker and weaker, with great difficulty breathing and started to drift in and out. She was admitted to the Pediatric Intensive Care Unit. In spite of being immeadiatly on medications to help her heart rate and blood preassure, that evening she had a tacacardia episode that lasted about 20 minutes while a team of twelve worked to get it under control. The rest of the night past with the crash cart remaining next to Khloe's bed..one of the longest nights of my life.
The next day an exploratory surgery which included a biopsy of her heart, along with an MRI, showed that her Scleroderma had started in her heart causing it to stiffen in several places. This has created an inability to expand enough to fill with blood and also the inability to push the amount of blood out to her body that is necessary for it to function. The damage is permanent and as Scleroderma is progressive the doctors have informed us that Khloe's life expectancy may only be counted in months, though there have been a few examples of longer periods over a year. The doctors goal now is to wean her off the medications that can only be given in the hospital and replace them with those that provide similar support but can be taken at home; this was started Tuesday of this week with the forcast of returning home by this weekend or early next week.
Coming home will be wonderful, but we wil have some new challenges. Right now Khloe can not get up to a standing position without her heart and blood pressure getting out of control, so the doctors are not ready to say what her ambulatory/mobility situation will be...walking slowly, wheelchair, mostly bedrest...it is unknown at this time but a plan will be in place before we leave the hospital. She will be fitted for a power wheel chair as her manual one will cause to much stress on her heart for her to push along and we may need to do some remodeling for a downstairs room and bath for her...we just don't know yet what to expect but the one thing the doctors keep encouraging is for Khloe to be able to do as much as she possibly can for as long as she can and be as independent as possible too, in order to keep her spirits up and a positive attitude.
Khloe herself has been unbelievably mature, understanding, accepting and wise way beyond her years. She has full knowledge of what has happened as well as what will happen in the future and her only concern was would it hurt when her heart gives out. Her heart specialist was able to explain to her yesterday that it would not hurt but be much the same as this episode, with her getting weaker and more out of breath over time until she finally was too tired to do anything at all and then her heart would simply stop. I know this is hard to read, it was hard for me to stand there during his explanation, but it was just what Khloe needed to hear for her to be comfortable with what will happen.
Now 8 days later Khloe is her normal, cheerful self (though disguised as a pincushion with 3 IV sites, 2 double PIC lines, and an arterial line) while she rests in bed in between the 3 times a day she must practice sitting up or standing for 2 minutes. We hope to be moved from the PICU soon to a room on a medical need basis vs an emergent need basis, and then to come home.
I will update this blog as information changes and look forward to keeping Khloe updated about those of you who shoose to leave comments. A tremendous "thank you" to each of you for your prayers, concern and support. We know many of you fasted in Khloe's behalf this past week and feel certain that the right combination of medicines that has helped her heart be able to function at a better capacity was finally found shortly there after.
Until the next post,
Kathi