1/16/09 - The Beginning

Hi,
Thanks to all of you for showing how much you care about Alyssa during this very trying illness that she is battling now. As she is in the ICU and unable to communicate through the Internet or by cell phone, we (Mom, Dad, Mark, Ryan Kyle & Quincy (her baby maltipooh) will try to keep you all updated through this blog. This is our first attempt at blogging, so we ask your patience as to format and use of the proper "blogging lexicon."

Background:
Alyssa became ill on Friday, January 9, suffering from what we assumed to be a stomach bug. She was vomiting and unable to keep even water in her stomach. This continued through Tuesday when we decided that she should be seen by her pediatrician. The diagnosis was that she had a stomach flu or a case of hand, foot and mouth disease (the current fallback disease for the pediatric world.) No tests or labs were performed at this time.

We knew Alyssa was really sick as she slept nonstop and couldn't even be enticed into watching her favorite tv shows. Dave called his doctor, Dr. Salamone and she agreed to get Alyssa in that same day. Blood tests were ordered and Alyssa went directly to the lab from the doctor's office. At 7:00 that evening, we got a call from the doctor telling Alyssa to go to the hospital as they did not like her blood test results.

Debbie and Alyssa headed off to Parkridge, figuring that might be the shortest wait time in emergency and assuming she just needed fluids. They were not taken in until 10:00 p.m. and then waited for additional blood tests to be returned. Once they were, there was a flurry of activity, with the Doctor telling Debbie that she had a very seriously ill little girl and that what he thought initially was an abdominal flu and dehydration turned out to be much more serious. After saying Alyssa was critical and would be going to Intensive Care, Debbie immediately called Dave to tell him he better come to the hospital too as things were looking very serious. No one gave us a specific name but they indicated that her kidneys had shut down and her blood levels were way out of line from normal ranges. Fortunately Alyssa was coherent and alert, which surprised everyone in the medical field given her blood levels. We spent that evening in Emergency with Alyssa being poked and prodded while tring to establish lines for her IV's in a very dehydrated body. The doctor said his initial reaction to her condition was to flood her with fluids, but then realized after seeing her blood that her kidneys couldn't handle that so fluids were not pushed and blood transfsions were started. Alyssa handled all of the attempts (over 40 minutes) at establishing an IV very well and never complained, even though she had never had more than a finger prick before and hated anything remotely involved with blood (even bulging veins were "gross"). Her only moments of pure agony came when they placed a foley catheter in her "urineless" (is this an adjective?) bladder after a couple of tries. The pain of this procedure was unbearable to Alyssa and she begged even her mother to take it out herself. Fortunately the nurse eventually agreed to take it out as she couldn't bear Alyssa's tears.

By now it was 5:00 am with no sleep for the weary. Alyssa and Debbie managed to get some rest between 5 and 7 am when the specialists began arriving. The blood specialist told us she had a very serious blood condition called "TTP" - and would need dialysis immediately. She would also require apherises treatment just like her father had recently undergone at Parkridge when he had been diagnosed with Guillan Barre. The apherisis machine is a plasma exchange where the blood is taken out of the body and certain things, in Ayssa's case, antibodies, are removed and others added and then the blood returns to the body. The Deffenbaughs need to buy stock in that machine!!!!

Alyssa had a port or central line put in at around 10:00 a.m. and her first dialysis treatment was started by noon. At that point the doctors were suspicious that Alyssa's condition was caused by e-coli and expressed concern about her system shutting down and possibly losing her. This was devastating news and Debbie and David started reaching out to contacts to see whether they should consider moving Alyssa somewhere given the unusual diagnosis.

It is now Sunday and Alyssa is on day 4 of intensive care. She has had dialysis every day for 3 hours and then the plasma exchange for 3 hours. The doctor does not think her condition was caused by e-coli as she has thus far tested negative for e-coli bacteria. They do not know what caused this to happen and may not be able to find out. Her blood levels have not returned to normal so far but some seem to be better than they were . For instance her platelet level was 5 then went to 3 prior to treatment and the norm is 150-400. She is now at 77. Needless to say we are all learning as we go and hoping to gain some understanding of all this.

Her kidney doctor today said that her kidney function is still non-existent and was concerned about some of the blood levels not coming around as he would like. He had a discussion with the woman running the apheresis machine and asked her if she had seen cases like this before. When she said yes he asked her whether they had recovered. She said usually but she had never seen blood levels like Alyssa's at the outset. That wasn't very reassuring and we still are not sure whether they were discussing Alyssa or her kidneys.

Alyssa has been an anamoly from the start as she looks healthy and is alert and completely normal acting (other than feeling exhausted and throwing up every day). She continues to look good and we are thrilled she has defied the odds with this thing. It has been a very scary experience and really teaches you to appreciate your loved ones and savor your time together as life changes on a dime and you just never know. It has also taught us to advocate with your doctors when something just doesn't seem right as Debbie's motherly instincts kept telling her to check on Alyssa every night 2-3 times and that this was not a simple stomach bug or hand, foot and mouth disease.

We are optimistic she will make a full recovery but the doctors have told us it will be very long process and no one can assure us that she will fully recover. Her youth is on her side. We want to thank everyone for all of their concern and the many phone calls, visits and food dropped off.