Saturday, January 31, 2009

1/31/09 Update - A Very Good Day!

What a difference 24 hours makes! We're sending this to you from bedside (Rochester General has free wireless) and Alyssa is off the ventilator, breathing on her own and off the heavy sedation that she was placed on. She is still very tired and sleeping most of the time, but she is communicating with us through a soft whisper. The first thing she asked was "what happened?"...thankfully she doesn't remember anything from Thursday morning on. We wish that they had a drug that makes the parents forget.

In the coming days we'll try to recap exactly what happened the past 48 hours. Right now we still have more questions than answers and are still faced with battling the TTP-HUS and her failed kidneys, BUT, she is smiling, drinking water and complaining about her "dirty hair" and we couldn't be happier! As we said...A VERY GOOD DAY!

Friday, January 30, 2009

1/30/09 Update

This will be a very short update as we have been up for 36+ hours and are very tired. However, we want you to know what is happening.

As many of you already know, Alyssa hit a real bump in the road yesterday morning and is currently in the Intensive Care Unit at Rochester General Hospital. She is on a ventilator and heavily sedated and in an induced coma to keep her calm and assist in stabilizing her condition.

What happened? On Thursday morning, Alyssa awoke with a very severe headache and blurred vision. For the first time she felt really scared and expressed to mom that she knew something was really wrong. She soon became disoriented, so we called 911 and had her transported to Rochester General. Shortly after arriving in the ER, Alyssa couldn't control her right arm, as it was elevated and twitching. A nurse in the hallway noticed what was happening and told us to get to the pediatric ER immediately. Shortly after being placed into a ER treatment room, she went into a full grand mal seizure. An experience that no child go through and no parent should have to watch. We knew things had changed dramatically and that this had gone far beyond a case of HUS, which in itself was scary enough.

The next 30 hours were a blur...two more seizures, aspirating her vomit, cat scans, MRI, ventilator, numerous drugs, arterial line, neurologists, intensivists, nephrologists, hematologists, three dialysis treatments, two apheresis treatments and a great deal of praying!

What we do know...

She did not have a stroke, which was initially thought to be the case. The MRI and cat scans both several spots on the brain, but the doctors believe these should be reversible.

The seizures were probably a result of on-going high blood pressure. Meds have prevented any subsequent seizures.

She is being treated for pneumonia, kidney failure, high blood pressure, HUS, seizures, and fluids around the heart and lungs.

Alyssa is a very sick young lady, but for those who know her she is a very tenacious and strong willed person who will fight and win this battle. Please keep her in your thoughts and prayers.

We greatly appreciate everyone's well wishes, but given the severity of Alyssa's condition, we would appreciate no visitors at this time. As soon as she is more responsive and stronger, we will let everyone know.


Wednesday, January 28, 2009

1/28/09 Update

Over the woods and through the snow storm to apheresis we go...

Alyssa woke up not feeling very well today--achy, with a headache, exhausted and general bad in fact that she almost expected to go back to the hospital. We also had disappointing news about her platelet count. It had gotten all the way to 197 at one point since she started this but it was only 127 today. The blood specialists have said that we should expect the levels to fluctuate with all she is going through, but given the fact that the last three readings are lower each time, that is not fluctuation but a downward trend that really concerns us. We are hopeful the doctors can make sense of it but we are likely going to get a second opinion as we are concerned that the blood problem may not yet be gone from her system. Fortunately she has begun feeling better since her plasma exchange and called her mom at work to say that she was ok and not to worry about her. She tends to try to keep us "up" about the whole ordeal.

She is suppose to collect her urine today but so far, no luck with that. Yes, we've tried running water and a hot bath.

1/28/09 Lab Results

Cut and paste for latest lab results:

1/27/09 - Tough Day

Tuesday was a tough day! Alyssa went to her first dialysis in the out-patient area at Unity Hospital. Where her apheresis treatments are done in a private room, the dialysis is now done in a very large room with a minimum of 40 other patients all going through dialysis. Alyssa is by far their youngest patient. If I had to guess, I'd say that the average age of the other patients was around 70 and most are dealing with long term diseases that were very evident in both their physical and mental appearances. Many are in the end stages of their lives. I can't imagine a more depressing place for a young adult to be spending 12 hours per week. What must Alyssa be this my future? How did I get to this point?

After waiting for a while in the waiting room, I couldn't bear to watch anymore. I ended up sitting in the car with tears streaming down my cheeks wondering how anyone, much less my 21 daughter should have to go through something like this. Two weeks ago we were arguing with her about cleaning-up her room and trying to keep her and her two younger brothers from fighting. My how things can change so fast!

While we're thankful that she has the dialysis and apheresis machines to help fight this battle, we can't help but wonder...why?

By the way - Alyssa didn't say anything negative about her experience.

Tuesday, January 27, 2009

1/27/09 - Lab Updates

We've been advised that there has been an issue with viewing the lab results. This issue should now be resolved.

Monday, January 26, 2009

1/27/09 - First Out-Patient Day

Back on the apherisis machine today, but this time on an out-patient basis. The treatments are done at the Unity Ambulatory Infusion Center located in St Mary's Hospital. The process is still under the control of the Red Cross, so the only changes are the location and that she gets to go home after each three hour treatment. Alyssa is scheduled for apherisis treatments on Monday, Wednesday and Friday.

Alyssa enjoyed her first full day at home on Sunday. Sleeping in her own bed and enjoying all the comforts that are found in your own home brought her a much needed "emotional lift." Her care was great at Unity Hospital, but you just don't get much rest with all the activity going on around you. While there are no nurses or doctors in our immediate family, we are able to provide a different level of care that when combined with her medical team's expertise will hopefully help Alyssa get back her good health.

Tomorrow is a dialysis day. We'll update on Tuesday night.

1/26/09 - Lab Update

Cut and paste the following link for the 1/26/09 lab results. These were completed before today's apherisis treatment.

Saturday, January 24, 2009

1/26/09 - Home Sweet Home!

After spending the day attached to dialysis and apheresis machines, Alyssa had her hospital sentence "commuted" and was sent home at 9:00 pm. She will continue with both dialysis and apheresis treatments, three days each per week, but they will now be done on an outpatient basis.

Why the sudden change? Other than a myriad of prescriptions, Alyssa's therapy is down to dialysis and apheresis treatments which don't require hospitalization. Plus her medical team believes that being at home will give her an emotional lift. We wish that we could report a change in her kidney function, but that will just have to wait for a future report. We're just thrilled to have her back home after 11 long days.

We know we are still at the beginning of what could be a long journey, but we're optimistic that better days are in Alyssa's future.

Next update will probably be on Monday. Thanks for your support!

1/23/09 - Lab Results

Copy and paste this link

1/23/09 Update

First we apologize for not providing a written update yesterday. It was a roller coaster day and by the time that we got home there just wasn't any gas left in the tank to write an update. It sounds awful, but there are times when you just don't want to talk about it anymore. We just wish that we would wake up and this would be nothing more than a bad dream.

We did meet with Dr Choudry on Friday. He has been fantastic with Alyssa. He has a daughter who is Alyssa's age, so this has hit very close to home for him. Having confidence in your medical team is extremely important and we have been very happy with those from Unity that have looked after Alyssa.

Update news:
What might or might not be the cause of the TTP-HUS:
Most likely not ecoli - the culture has not grown any bacteria to-date
Not Salmonella - You peanut butter conspirator's can cross this one off
Not her contact lenses - Alyssa is famous for leaving her lenses in too long.
ADAMST13 test was negative.

Her birth control pills have become the prime suspect, but there is no definitive test to prove this. So Alyssa will air on the side of caution and discontinue using the pill immediately.

Dr Choudry believes that this is more an HUS than TTP case. He is cautiously optimistic that Alyssa will get through this and will eventually see a return of full kidney function; but that this could take up to three months to happen. He believes that no other organs other than the kidneys have been affected so far.

Her labs were a little disappointing today, so she will be receiving a blood transfusion on Friday and one more on Saturday. She will also undergo both plasma pherisis and dialysis on Saturday.

In closing, let me share what Dr Choudry's motto is:
Always stay optomistic *
Never lose hope *
Always keep fighting

...and she is!

1/24/09 Update

Friday, January 23, 2009

1/23/09 - Lab Results

Copy and paste in your browser. This is not a direct link.

1/22/09 - Pictures

Lori from Debbie's office

Sunflowers in a bed urinal

1/22/09 Lab Results

Copy & paste for most current lab results:

Thursday, January 22, 2009

1/22/09 - Lab Results

Copy & Paste Link Below

1/22/09 - Typical Day

Not much new to report. It was what has become a "typical day" for Alyssa...wake up at 5:30 am for blood tests, 7:00 am, doctor's rounds; 9:00 am apheresis treatment; 1:00 PM doctor's rounds #2; well, you get the picture. She did have several visitors today including many friends from Bed, Bath & Beyond.

Her kidneys are still not working which means that she will need to continue both apheresis and dialysis treatments for the foreseeable future. We are hoping the treatments can be handled on an out-patient basis. We are meeting with Alyssa's Nephrologist ( tomorrow morning to get a "big picture" update. We have a long list questions that just can't be addressed when they visit her room each day, so we've asked for a more 1/1 meeting to assess exactly where we are and what the short term prognosis is (were still are not looking much beyond each day.)

Again, thanks for your prayers and support!

Wednesday, January 21, 2009

1/21/09 Lab Results

Copy & Paste Link Below

1/21/09 - Couple More Pictures

Brothers: Kyle, Ryan & Mark

Nicole, Court & Steph

Tuesday, January 20, 2009

1/20/09 - Pictures

Mom & Dad

Alyssa and her Port

Pete, Janelle & Nicolas

1/20/09 - Update #2

Tuesday, January 20, 2009 Update #2

Alyssa received her new central line this afternoon. Other than a little bleeding episode after she returned to the room, she came through the procedure in good shape. This more"long term" catheter is necessary to help reduce the chance of infection. The initial one was a "temporary" in hope that she wouldn't need it for very long. Don't read too much into "long term," Alyssa says that she won't need it for very long!

A couple updates on the diagnosis process...they have ruled out E-coli O157:H7 ( as the cause. This means that she is no longer required to be in an isolation environment. Alyssa doesn't eat red meat and like her father, avoids vegetables, so we aren't surprised that she doesn't have this terrible strain of e-coli; but we still aren't any closer to finding the cause.

TTP-HUS ( is what they are now calling her ailment. The treatment remains the same whether it is TTP or TTP-HUS.

The link below will take to you an excel file that shows Alyssa's lab results. Sorry that the formatting that we used in the last update did not work in Blogger.

1/20/09 - Update #1

Tuesday morning…
Alyssa continues to show improvement with her chemistry and hematology results, but still has no kidney function. Below are her numbers for those that understand such things. Debbie and Dave are learning on the fly what each represents.

Date HCT Platelet BUN Creatinine LDH
Normal Ranges 33-37 150 - 400 16 1.8 Below 200

Wednesday, January 14, 2009 15.6 72 156 19.2 2444
Thursday, January 15, 2009 17.5 63 159 19.3 n/a
Friday, January 16, 2009 21.8 57 108 13.1 1108
Saturday, January 17, 2009 25 58 56 9.1 855
Sunday, January 18, 2009 23 77 36 6 581
Monday, January 19, 2009 23.8 97 49 8.6 n/a
Tuesday, January 20, 2009 23.3 122 32 5.7 382

Alyssa has been moved from the ICU to a room on the third floor. We took this to be a positive sign, but were told later that this was more for logistical reasons then a response to her condition. She is in a private room as all rooms at Unity are private, so she doesn’t have to deal with any “roommate issues.”

She continues to receive plasma (apheresis treatments on a daily basis. This is a two hour procedure where they remove her blood, clean it and return the healthy cells back to her body (a very simple explanation of an extremely complex procedure.) Before the existence of the apheresis machine/process, the mortality rate for patients with TTP was 100%. The “machine,” that two years ago we knew nothing about, has certainly played a key role in Alyssa and Dave’s lives. We are thankful for its existence!

Dialysis treatments are currently scheduled for three times week. As mentioned above, we have yet to see any positive movement toward her regaining any kidney function.

Tuesday afternoon, Alyssa will have a more permanent central line ( inserted in her chest to help facilitate her plasma and dialysis treatments. As this is a surgical procedure, she is rather anxious to get this over with.

Alyssa wants to thank her many friends and relatives that have come to visit her. She was especially happy to see her three year old nephew, Nicolas, who visited with his mom, Janelle and dad, Pete. Janelle just gave birth to a beautiful baby girl, Bella, but Alyssa will have to wait a little longer to see her newest niece.

Alyssa has her computer with her and if the wind blows just right, she is able to p/u a wireless signal, so don’t be surprised if you find her on Facebook or AIM.

We have been told that Alyssa’s HCT and creatinine levels were among the worst that they have ever seen here. Her numbers continue to improve, but we have been cautioned that she is “not out of the woods” yet. Patience is the word that we have heard the most; but when it comes to our children, we have very little of it.

We’d like to know what caused this, but probably never will. We’d like to know what the future holds for Alyssa, but it’s too early to look beyond the current day. So for now we research, ask numerous questions and pray for a positive outcome.


Friday, January 16, 2009

1/16/09 - The Beginning

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."

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.