Today's lab results are in and they are very good, so Alyssa has been returned to the comfort of her home for a day of relaxation. Tomorrow she will have her dressing changed and receive a regular dialysis treatment.
dd
Monday, March 30, 2009
Sunday, March 29, 2009
3/29/09 - Peaceful
It's been a very quiet day of which you will hear no complaints from us. Alyssa slept till 10:00 AM, then spent a low key day at home with Debbie's side of the family. The only issue has been that her BP has been running on the low side most of the day (109/62 on average.) This isn't bad news, but it makes you wonder what causes such large swings in her readings. I'm in the process of using Excel to graph her BP readings and overlay the meds that she is taking to see if there is a pattern to the big changes.
Tonight she's at the movies with her good friend Steph and both of their moms (I Love You, Man;) then tomorrow it's back to Rochester General for blood work at 9:30 AM. If all results are within normal ranges, she will have an afternoon free of the medical profession.
dd
Tonight she's at the movies with her good friend Steph and both of their moms (I Love You, Man;) then tomorrow it's back to Rochester General for blood work at 9:30 AM. If all results are within normal ranges, she will have an afternoon free of the medical profession.
dd
Saturday, March 28, 2009
3/28/09 - Some Good & Some Bad
Friday - Although Alyssa came home from the hospital late Thursday, it was a quick turnaround as we had to be back at the hospital at 9:30 AM Friday for additional blood labs. Her hematocrit came up to 31 from Thursday's 24, while her platelet count remained the same, meaning she wouldn't need to have another blood transfusion or plasmapheresis treatment. While her hematologist does not believe that the HUS has returned, he does want to tightly monitor her readings through twice weekly blood labs. At this time she doesn't have any major shearing of the red blood cells which was so prominent in her first two hospitalizations; but there are still other symptoms such as the high BP, ongoing nausea and roller coaster lab results that have yet to be explained.
No required treatments meant that the road to Eastview Mall Friday afternoon was clean and green. Three Vera Bradley purchases were made, but two were by mom, so Alyssa's, never ending thirst for new purses went unquenched.
Saturday
Back to the Dialysis Center for her first treatment there since being readmitted to the hospital. We don't know what it is about this place, but it certainly does wreak havoc with her blood pressure. After several treatments in the hospital with relatively low readings, the ugly numbers were back in full force today...205/125. Also making its return was a day full of vomiting. She struggled through the 3 1/2 hour treatment only to find that her BP had dropped to 91/37 on the final reading. This usually occurs when they have taken too much fluid off her, so they extended her treatment to put back on some fluid. Her BP finally came back up (I can't believe that I'm writing about needing her BP to rise) and home she went.
Exhausted both mentally and physically, she slept for the rest of the day.
No treatments or tests of any kind tomorrow. YES!
dd
No required treatments meant that the road to Eastview Mall Friday afternoon was clean and green. Three Vera Bradley purchases were made, but two were by mom, so Alyssa's, never ending thirst for new purses went unquenched.
Saturday
Back to the Dialysis Center for her first treatment there since being readmitted to the hospital. We don't know what it is about this place, but it certainly does wreak havoc with her blood pressure. After several treatments in the hospital with relatively low readings, the ugly numbers were back in full force today...205/125. Also making its return was a day full of vomiting. She struggled through the 3 1/2 hour treatment only to find that her BP had dropped to 91/37 on the final reading. This usually occurs when they have taken too much fluid off her, so they extended her treatment to put back on some fluid. Her BP finally came back up (I can't believe that I'm writing about needing her BP to rise) and home she went.
Exhausted both mentally and physically, she slept for the rest of the day.
No treatments or tests of any kind tomorrow. YES!
dd
Thursday, March 26, 2009
3/26/09 - Is She Coming or Going?
Alyssa's Biggest Supporter - Aunt SandyThe day started with such promise. Surgery was behind her, BP levels had been at acceptable levels and even her ever present nausea seemed to be on hiatus. All we had to do was get through dialysis this morning, then home she would go home. She had made big plans for the weekend...Friday, off to Eastview Mall to go purse shopping, albeit in a wheelchair. Saturday a movie and maybe a visit with her nieces and nephew...let the good times roll!
It's 8:30 PM on Thursday and we are still in RGH. What went wrong?
Alyssa flew right through her dialysis treatment, recording the lowest BP averages that she's ever had and she even dropped below her target dry weight. So far, so good. Anticipating the pending departure, mom & dad packed up her room and sent everything off with Deb as she departed for work. Then it happened.
Fearing the wrath of Alyssa, her regular doctors sent a hospitalist physician, that we had never met before, to deliver the news that Alyssa dreaded the most. Her platelets had fallen to 180 and her HCT had dropped to 24, levels that they felt warranted a blood transfusion and another night at RGH. You could feel the air being sucked right out of the room. The purses would have to wait.
But wait, if this illness has taught Alyssa anything, it's perseverance. So when one of her regular doctors came to visit at 4:00 PM, she laid out a scenario that might let her still go home tonight. Do the transfusion in her room, go home after, but return tomorrow morning for additional lab work. If Friday's levels rise, she's free to go purse shopping. If they remain the same or drop, she will have to have a plasmapheresis treatment.
As with the Foley catheter yesterday, Alyssa again prevailed having successfully made her case (the pouty face didn't hurt either.)
Between the "type and cross," ordering the blood and the transfusion itself, getting a blood transfusion is a rather long process. She was finally hooked-up at 6:15 PM and should be done by 9:15 PM. Dare I say it, if all goes well, we could be out of here by 10:00 PM.
Watch out Eastview, there are no Dooney & Bourke, Dolce & Gabbana, Coach & Vera Bradly purses that are safe.
dd
Wednesday, March 25, 2009
3/25/09 - Everything Went Well!
Alyssa is back in her room after very successful peritoneal catheter implant surgery. The picture shows her in the recovery room, thrilled that this step is done and ready to move on to her peritoneal training sessions that begin in 10 days. The doctors reported that other than a spike in her BP (190/125,) the procedure went exactly as planned. Alyssa even gave them a brief moment of brevity...while in the operating room, and just prior to receiving her anesthesia, Alyssa heard Dr Kurchin ask a nurse to get a Foley catheter. Background - Alyssa was put on a Foley catheter during her first stay at Unity Hospital. To this day she says that was the most discomfort that she has felt.
Hearing the words Foley catheter caused her to raise her hand and rather emphatically say to Dr Kurchin - "I don't pee anymore and I DEFINITELY don't do Foley catheters." She prevailed!
Pending the approvals of her fleet of doctors, it is hoped that she can return home on Thursday afternoon. We are finally beginning to see a light at the end of this long, dark tunnel.
We don't say it enough, but thank you to all of you for your support. You have made a big difference in Alyssa's ability to fight through this terrible time in her life. She knows that she is not is not doing this alone!
dd
3/25/09 - Just Went Into Surgery at 4:45
With her infamous "Prayer Bear" wrapped around her thumb, Alyssa was just wheeled into the operating room. The procedure will take between one and two hours.
Tuesday, March 24, 2009
3/24/09 - Surgery Still On
The doctors have consulted, the testing is complete, and the patient is ready, so Mission Peritoneal is a go for tomorrow afternoon at 2:30 PM. As Alyssa is still in the hospital, it will be treated as an in-patient procedure. She will likely remain here until at least Thursday, to allow for better BP maintenance.
dd
dd
3/24/09 - 10:30 AM
99/55 - No, that's not a March Madness score, it's Alyssa's BP this morning. We are now entering virgin territory with readings this low. We're not sure if the new meds are kicking in or if it's that the planets have all aligned in the proper formation. What makes this even more amazing is that she is the middle of dialysis, which is where we typically see her highest pressures. Not to complain, but we really don't want to see her BP remaining at this low a level, but it makes us realize that they can drive it down with the right combination of drugs.
After a very difficult day yesterday, Alyssa is feeling much better this morning. She had a rough bout of nausea on Monday that necessitated giving her Phenergan. While this is a wonderful drug, it really knocks you for loop and Alyssa ended up sleeping until 7:00 PM. As a result she didn't eat or drink anything all day, which is not good as she has already lost too much weight. She ate breakfast this morning and so far, so good.
The rescheduled from last week Peritoneal surgery is still set for tomorrow afternoon. If Alyssa can stay issue free today, they will do her surgery as planned. It will probably have to be a "game-time" decision. She would love to get this done so that she can begin home dialysis. We'll keep you posted.
dd
After a very difficult day yesterday, Alyssa is feeling much better this morning. She had a rough bout of nausea on Monday that necessitated giving her Phenergan. While this is a wonderful drug, it really knocks you for loop and Alyssa ended up sleeping until 7:00 PM. As a result she didn't eat or drink anything all day, which is not good as she has already lost too much weight. She ate breakfast this morning and so far, so good.
The rescheduled from last week Peritoneal surgery is still set for tomorrow afternoon. If Alyssa can stay issue free today, they will do her surgery as planned. It will probably have to be a "game-time" decision. She would love to get this done so that she can begin home dialysis. We'll keep you posted.
dd
Sunday, March 22, 2009
3/22/09 - Not much to report
BP has been high most of the day and just hit 180. They are trying different doses and changing the timing of some. So far we are not impressed with the results. As we've noted many times, it's almost impossible to get anything done on the weekends. Our regular doctors are not on duty and the on-call doctors never want to make any changes to a non patient; so it's always "hold on till Monday." When BP is at 180, don't tell me to hold on!
Alyssa only had one treatment today versus the two-a-days that she has been going through. Her blood levels have been improving gradually and she is starting to feel better overall. Monday will be day seven of this latest visit and we would love to make it the last day. We'll see all of her doctors on Monday and there are plans for both plasmapheresis and dialysis treatments. No rest for the weary.
The following is written with nothing but the utmost respect for Alyssa's fellow patients. That said, when you spend as much time in a hospital as Alyssa has, you need to look for anything that will make you smile, much less laugh.
The unit that Alyssa is in now can only be described as surreal. We have a nice man next door who sleeps all day, then yells out names all night. Let's just say that sleeping without an Ambien is impossible. Then down the hall is another nice man who sits in a wheelchair outside his room...buck naked! He removes his gown, neatly folds it, and lays it on his tray...over and over again. Once the visiting hours have ended, they just let him stay naked as that is what makes him the happiest. Alyssa has named him "Skinny Naked Man" after the ongoing character, "Ugly Naked Man" on her favorite TV show, Friends. Oh, I almost forgot; across the hall is another man, who also sits outside his room, you guessed it, naked. He's a little beefier, so we call him "Heavy Naked Man." Alyssa has sure seen and experienced a lot for a 21 year old.
Finally, this afternoon Alyssa and her mom hijacked a wheelchair (no, not naked man's) and snuck out the hospital's front door to breath some fresh air and feel the warmth of the sunny spring day. Through a huge smile, she commented that she will never, ever, take either for granted again.
dd
Alyssa only had one treatment today versus the two-a-days that she has been going through. Her blood levels have been improving gradually and she is starting to feel better overall. Monday will be day seven of this latest visit and we would love to make it the last day. We'll see all of her doctors on Monday and there are plans for both plasmapheresis and dialysis treatments. No rest for the weary.
The following is written with nothing but the utmost respect for Alyssa's fellow patients. That said, when you spend as much time in a hospital as Alyssa has, you need to look for anything that will make you smile, much less laugh.
The unit that Alyssa is in now can only be described as surreal. We have a nice man next door who sleeps all day, then yells out names all night. Let's just say that sleeping without an Ambien is impossible. Then down the hall is another nice man who sits in a wheelchair outside his room...buck naked! He removes his gown, neatly folds it, and lays it on his tray...over and over again. Once the visiting hours have ended, they just let him stay naked as that is what makes him the happiest. Alyssa has named him "Skinny Naked Man" after the ongoing character, "Ugly Naked Man" on her favorite TV show, Friends. Oh, I almost forgot; across the hall is another man, who also sits outside his room, you guessed it, naked. He's a little beefier, so we call him "Heavy Naked Man." Alyssa has sure seen and experienced a lot for a 21 year old.
Finally, this afternoon Alyssa and her mom hijacked a wheelchair (no, not naked man's) and snuck out the hospital's front door to breath some fresh air and feel the warmth of the sunny spring day. Through a huge smile, she commented that she will never, ever, take either for granted again.
dd
Saturday, March 21, 2009
3/21/09 - 11:30 AM
In last night's update we encouraged visitors to come and see Alyssa. Unfortunately we are going to have to put that offer on hold for a few days. As we have been noting recently, Alyssa's blood labs have not been very good this week. She now has neutropenia, which is where you have an abnormally low number of a type of white blood cell called a neutrophil. Patients with neutropenia are more susceptible to bacterial infections; so as a precautionary move, we will ask that no visitors come to the hospital to see Alyssa at this time. Thanks for understanding.
Alyssa' first BP reading this morning was 178/110, which is unusually high for her at this time of day. She has just finished her apheresis treatment and her BP is down to a better 142/83. We are still waiting for those all important lab numbers. Next up is her 3 1/2 hour dialysis treatment.
And you thought raking leaves and doing laundry on a Saturday was a drag!
dd
Alyssa' first BP reading this morning was 178/110, which is unusually high for her at this time of day. She has just finished her apheresis treatment and her BP is down to a better 142/83. We are still waiting for those all important lab numbers. Next up is her 3 1/2 hour dialysis treatment.
And you thought raking leaves and doing laundry on a Saturday was a drag!
dd
Friday, March 20, 2009
3/20/09 - Tough Day
When we came to the hospital on Tuesday, we all assumed that it would be a very brief visit. Stabilize her drug reaction and get a little extra BP medicine and home we'd go. They actually gave Alyssa the option to go home that night if she wanted to, but she wisely decided to stay. For the most part, it's been a rough road ever since. Today did nothing to change that feeling.
We did finally make it down to the ICU late last night. After a couple of dosage changes and the addition of two new drugs, her BP and pulse were finally brought down to tolerable levels. She actually had a rather good night of sleep.
Life in the hospital follows a rather routine pattern...rounds with the doctors, blood draws, taking vitals, etc. For the Deff's, our day revolves around the lab reports - HCT, platelets, LDH, creatinine, etc. The reports this week have continually gotten worse, especially with her platelet count, which this morning dropped to 101, a level that we have not seen in quite a while. To combat this, she will need to have plasmapheresis treatments for at least the next few days. Not the end of the world, but very troubling to us because no one can explain why this is happening.
Alyssa has been a role model patient, doing everything and more that's been asked of her. But regardless of her efforts, her quality of life remains very poor right now. We are very thankful for how far we have come since January, but we still want more for Alyssa.
Today, one of her doctors spoke quite frankly to us about his frustration of not being able to get her issues under control. We were told that one rather drastic option to control her blood pressure would be to remove her kidneys. The doctor explained that although her kidneys may not be functioning properly, they can continue to wreak havoc on her blood pressure and there is some support in the research that certain patients pressure was better controlled after their kidneys were removed. He warned us that there is no reason to think this would help in Alyssa's particular case, but it might be something to consider. He said the goal is to keep her healthy and avoid any serious issues that high pressure could cause before we can get her a transplant. Since Alyssa's kidneys are recuperating, albeit slowly, we won't be choosing this option. We are very thankful this doctor took the time to review her entire list of medications with an eye toward simplifying it and making it more effective with some different medications. We were surprised that at this point in time, we are just hearing about these changes that thus far seem to be working better than what she had been on.
Alyssa has been very strong but is understandably discouraged to be back to two procedures a day. She knows she is going to kick this thing in the butt and come out stronger and more appreciative of all those little things in life that we all take so for granted until they are taken from us--like a shower and washing her hair right now. She would love to have some visitors and has a nice private room in the 5500 unit.
dd
dd
Thursday, March 19, 2009
3/19/09 - Back to the ICU
As you can tell by the title, this has not been a very good day for Alyssa. Escalating BP (195/120,) blurred vision, a pulse rate that has been hovering around 120 (new high) and a platelet count that dropped to 119, is sending Alyssa back into the intensive care unit. The ICU staff is better equipped to meet Alyssa's current needs such as the ability to provide intravenous BP medicine. We look at this as a precautionary move at this time. She has had numerous issues for about a week now that we just haven't been able to get under control. The stress of all the above, along with her ever present fear that she will have additional seizures due to the high BP, has really taken a toll on her. It probably is a factor in escalating pulse. It may sound crazy, but she feels very safe in the ICU and is not upset about making this move.
The day had started rather uneventfully. A few minor tests and off to dialysis in the RGH Dialysis Center. After a typical treatment, she returned to her room for her plasmapheresis treatment. Yes, we thought that she had received her last treatment last week, but her platelet count didn't agree with us. I know that we say this a lot, but hopefully this is just a temporary need. Just prior to apheresis, her BP and pulse went way up. She also began experiencing blurred vision in both eyes.
I'd seen enough and immediately put in requests for all of her doctors. I know that there has to be a better way to get this under control and more importantly, provide her with some sense of peace and confidence. She has suffered far too much!
Within ten minutes the "March of the Physicians" began. A new BP med was added; she was taken off iron pills (nausea;) taken off Albuterol (causes increased pulse;) had her eyes dilated and examined - several abnormalities were found, but all are a result of current situation; reassigned to ICU and we are still waiting for the Neurologist. The medical world has become very specialized and sadly, very fragmented. It's like a baseball team without a manager, there is no one filling out the "lineup card" and looking at the role of all the of the players. You become the manager by default. It's an exhausting job, but oh so necessary. I really feel for the vast majority of patients who don't have anyone here to support them. Everyone here wants to be helpful and they try to stay on top of Alyssa's needs; but lets face it, there are just too many patients and too few doctors/nurses.
As I close, we are still waiting to be moved down to the ICU as her room isn't ready yet. She declined to take the first room that they assigned her to, as it was the room that three patients died in when she was in the ICU last time...plus it was room #13. No more bad luck...right now we need some good karma!
dd
The day had started rather uneventfully. A few minor tests and off to dialysis in the RGH Dialysis Center. After a typical treatment, she returned to her room for her plasmapheresis treatment. Yes, we thought that she had received her last treatment last week, but her platelet count didn't agree with us. I know that we say this a lot, but hopefully this is just a temporary need. Just prior to apheresis, her BP and pulse went way up. She also began experiencing blurred vision in both eyes.
I'd seen enough and immediately put in requests for all of her doctors. I know that there has to be a better way to get this under control and more importantly, provide her with some sense of peace and confidence. She has suffered far too much!
Within ten minutes the "March of the Physicians" began. A new BP med was added; she was taken off iron pills (nausea;) taken off Albuterol (causes increased pulse;) had her eyes dilated and examined - several abnormalities were found, but all are a result of current situation; reassigned to ICU and we are still waiting for the Neurologist. The medical world has become very specialized and sadly, very fragmented. It's like a baseball team without a manager, there is no one filling out the "lineup card" and looking at the role of all the of the players. You become the manager by default. It's an exhausting job, but oh so necessary. I really feel for the vast majority of patients who don't have anyone here to support them. Everyone here wants to be helpful and they try to stay on top of Alyssa's needs; but lets face it, there are just too many patients and too few doctors/nurses.
As I close, we are still waiting to be moved down to the ICU as her room isn't ready yet. She declined to take the first room that they assigned her to, as it was the room that three patients died in when she was in the ICU last time...plus it was room #13. No more bad luck...right now we need some good karma!
dd
Wednesday, March 18, 2009
3/18/09 - Still at RGH
Alyssa did make a trip to the operating room today; but not for her planned peritoneal surgery. Due to ongoing fears that her Permcath catheter had become infected, it was removed and a new one inserted. High fevers and intermittent bleeding around the entry point of the catheter, made it an easy decision to replace it. As Dr. Kouides put it, "catheters are the bane of the medical world." They are very necessary to facilitate such procedures as hemodialysis and plasmapheresis, but the fear of infection always hangs over the patients head. The use of the Permcath is usually a short term solution (makes you wonder why they named it "Perm"cath) with the use of a fistula or peritoneal access a safer long term option. Hopefully Alyssa will not need to use the Permcath within a month after her peritoneal surgery is performed, but she does still need one for the time being.
The surgery went well and she is recovering nicely at RGH. They want to keep her for at least one more night to continue monitoring her BP, fever and vomiting issues. There is definitely an infection in her body; but whether it's due to the catheter, a bronchial infection, stomach disorder or some unidentified cause has yet to be determined. She has a very nice private room and excellent care, so we are all comfortable with her staying as long as it takes to get her current issues under control.
Tuesday was a long day followed by a sleepless night, and another busy day today, so I'm going to retire early.
dd
The surgery went well and she is recovering nicely at RGH. They want to keep her for at least one more night to continue monitoring her BP, fever and vomiting issues. There is definitely an infection in her body; but whether it's due to the catheter, a bronchial infection, stomach disorder or some unidentified cause has yet to be determined. She has a very nice private room and excellent care, so we are all comfortable with her staying as long as it takes to get her current issues under control.
Tuesday was a long day followed by a sleepless night, and another busy day today, so I'm going to retire early.
dd
Tuesday, March 17, 2009
3/17/09 - Back in the Hospital
It's been a very strange and long day...after 12 long hours in the ER, Alyssa was admitted tonight to Rochester General Hospital. We aren't exactly sure what the source of this setback is, which explains why we are staying here tonight. So how did we get to this point?
Like many Rochester families, the Deffs have all been battling cold and flu symptoms. Alyssa was the last to finally fall. She has had both a cough and low grade fever since last Friday. Today during dialysis, she took a turn for the worse. Her fever went to 102+, her cough took on a decidedly new tone, and, of course, her blood pressure took off again - 190/120. A fever in excess of 100 degrees is a very big concern for patients with catheters as they often are indicative of an infection in the line. Blood pressure readings in the range of today's were what caused Alyssa's seizures in January.
Taking a proactive stance, her doctor put her on vancomycin, a very strong antibiotic. Well, with Alyssa being Alyssa, she of course had an infusion reaction to the drug called red man syndrome. Her neck, face and back became, well, red and she starting itching all over.
High BP & fever & an infusion reaction...the next thing we know, we are in an ambulance on the way to RGH. It was, as Yogi Berra said, "deja vu all over again" as we retraced our steps of January 29th. Thankfully there were no seizures this time. We are also thankful that Alyssa qualified to be taken into the pediatric emergency room where she went right into a treatment room. The wait for the regular ER was at least four hours. We are also very thankful that the doctor that originally treated her in January was on duty today and immediately began treating Alyssa. She received another antibiotic, gentamycin and initially responded favorably. But within an hour her temperature again went past 102 degrees and her oxygen level dropped below 90 so it was decided that she should be admitted until they figure out what is causing all of this. If it is the catheter, the current one will be pulled out and a new one inserted. If it's a viral infection, we'll just have to wait it out.
Of course this means that her peritoneal surgery, scheduled for Wednesday, was postponed until next Wednesday at the earliest.
We hope that this is just a small setback in Alyssa's struggle to regain some normalcy in her life.
Alyssa had been concerned that her blog was losing some readers, as the updates haven't had much zing lately. I guess this shows that she will do anything to bring her readers back on board :=)
dd
Like many Rochester families, the Deffs have all been battling cold and flu symptoms. Alyssa was the last to finally fall. She has had both a cough and low grade fever since last Friday. Today during dialysis, she took a turn for the worse. Her fever went to 102+, her cough took on a decidedly new tone, and, of course, her blood pressure took off again - 190/120. A fever in excess of 100 degrees is a very big concern for patients with catheters as they often are indicative of an infection in the line. Blood pressure readings in the range of today's were what caused Alyssa's seizures in January.
Taking a proactive stance, her doctor put her on vancomycin, a very strong antibiotic. Well, with Alyssa being Alyssa, she of course had an infusion reaction to the drug called red man syndrome. Her neck, face and back became, well, red and she starting itching all over.
High BP & fever & an infusion reaction...the next thing we know, we are in an ambulance on the way to RGH. It was, as Yogi Berra said, "deja vu all over again" as we retraced our steps of January 29th. Thankfully there were no seizures this time. We are also thankful that Alyssa qualified to be taken into the pediatric emergency room where she went right into a treatment room. The wait for the regular ER was at least four hours. We are also very thankful that the doctor that originally treated her in January was on duty today and immediately began treating Alyssa. She received another antibiotic, gentamycin and initially responded favorably. But within an hour her temperature again went past 102 degrees and her oxygen level dropped below 90 so it was decided that she should be admitted until they figure out what is causing all of this. If it is the catheter, the current one will be pulled out and a new one inserted. If it's a viral infection, we'll just have to wait it out.
Of course this means that her peritoneal surgery, scheduled for Wednesday, was postponed until next Wednesday at the earliest.
We hope that this is just a small setback in Alyssa's struggle to regain some normalcy in her life.
Alyssa had been concerned that her blog was losing some readers, as the updates haven't had much zing lately. I guess this shows that she will do anything to bring her readers back on board :=)
dd
Saturday, March 14, 2009
3/14/09 - #2 Lab Results Back
The report came in tonight and the news is good...Alyssa's platelet count is back up to a strong 187 and her hematocrit is at 31. So for now, she does not have to resume plasmapheresis treatments. On Monday morning she'll go into Rochester General for another blood draw to recheck the platelet count; but for tonight, she's happy that there are no pheresis treatments hanging over her head and her surgery is still a go for Wednesday.
dd
dd
3/14/09 - Waiting for the Labs
It's pins and needles time...we're waiting for Alyssa's labs to come back this morning to see where her platelet count is. It appears that we may have celebrated prematurely her no longer needing to receive plasmapheresis treatments. Her platelets count unexpectedly dropped down to 135 on Thursday. If they continue that downward trend today, Alyssa will to need receive plasmapheresis treatments next Monday, Wednesday and Friday. If they are really low today, she might require a treatment this afternoon. This was news that she didn't want to hear.
What could cause this sudden drop? High BP is a prime suspect and she certainly has had a bad week on the BP roller coaster. It could also be caused by the HUS, but we'll leave that one on the back shelf for now.
What this might result in is a need to postpone her peritoneal surgery on Wednesday. Platelets are critical to the clotting process and obviously, no one wants to go into a surgical procedure worried about clotting issues.
So we sit and wait...and hope for the best.
dd
What could cause this sudden drop? High BP is a prime suspect and she certainly has had a bad week on the BP roller coaster. It could also be caused by the HUS, but we'll leave that one on the back shelf for now.
What this might result in is a need to postpone her peritoneal surgery on Wednesday. Platelets are critical to the clotting process and obviously, no one wants to go into a surgical procedure worried about clotting issues.
So we sit and wait...and hope for the best.
dd
Wednesday, March 11, 2009
3/11/09 - The Good and the Bad
Bad News
BP has been very bad the past three days, going as high as 190 systolic and 118 diastolic. She is already on five different BP medicines (Clonindine, Hydralazine, Enalapril, Metoprolol & Amlodipine) and three of those are at the highest recommended daily dose. Yesterday, they gave her one extra dose of Clonindine to knock it back down. We're not sure if something else has come in to play here or are we still trying to find the proper level and mix of meds. One thing the doctors and the nurses all agree on is that she is taking an incredible amount of meds, especially for someone that is only 21 years old. We always assumed that BP would level off as we got the blood issues under control, but that has not been the case at all. We're also concerned about how long she will have to continue taking all these meds and what their long term effects will be on her.
Alyssa's quality of life has really taken a beating. By the time she gets done with dialysis treatments, she is so tired that she'll often sleep for the balance of the day. She has also experienced a great deal of nausea, so she seldom wants to eat anything, which drains her energy level... so around and around the merry-go-round we go. She has already lost 25+ pounds and just can't afford to lose much more. At this point, her nutritionist and doctors want her to eat anything, whether it's on her renal diet or not. We made a big hit with a homemade root beer float last night, so I guess that we will have to continue to look for what appeals to her.
Still no kidney function. She had her physical at 7:00 AM this morning (I forgot what it's like to get up this early) and was cleared for peritoneal surgery next week. They will need to give her a special blood clotting drug and will control her blood pressure through an IV drip. She is nervous about the surgery, but very excited about being able to do her dialysis at home while she sleeps.
Good News
Her MRI taken last week, came back clean. Almost all the damage done as a result of her seizures in February has been reversed. Great, great news!
Also, her blood labs have stayed within targeted levels now for about a week, so Dr Kouides has stopped, for now, her plasmapheresis treatments. We're very hopeful that eliminating these three times per week treatments will help Alyssa gain some much needed energy. She will have blood drawn two times per week to ensure that she stays within her target numbers.
She did shed a few tears on the way home after her final treatment Monday. She has become very attached to her Red Cross nurses that have been with us constantly since this all started back on January 14. As we stated in prior blogs. Alyssa's blood disorder was 98% fatal before apheresis was developed so we certainly are thankful for this life saving process. We also cannot thank the Red Cross nurses enough for the care, compassion, guidance and friendship they provided in addition to this essential treatment. They will always be part of our "extended" family.
Alyssa is still a very sick young lady, but we are going to celebrate every "victory" that she achieves and continue to look forward to a brighter future for her.
dd
BP has been very bad the past three days, going as high as 190 systolic and 118 diastolic. She is already on five different BP medicines (Clonindine, Hydralazine, Enalapril, Metoprolol & Amlodipine) and three of those are at the highest recommended daily dose. Yesterday, they gave her one extra dose of Clonindine to knock it back down. We're not sure if something else has come in to play here or are we still trying to find the proper level and mix of meds. One thing the doctors and the nurses all agree on is that she is taking an incredible amount of meds, especially for someone that is only 21 years old. We always assumed that BP would level off as we got the blood issues under control, but that has not been the case at all. We're also concerned about how long she will have to continue taking all these meds and what their long term effects will be on her.
Alyssa's quality of life has really taken a beating. By the time she gets done with dialysis treatments, she is so tired that she'll often sleep for the balance of the day. She has also experienced a great deal of nausea, so she seldom wants to eat anything, which drains her energy level... so around and around the merry-go-round we go. She has already lost 25+ pounds and just can't afford to lose much more. At this point, her nutritionist and doctors want her to eat anything, whether it's on her renal diet or not. We made a big hit with a homemade root beer float last night, so I guess that we will have to continue to look for what appeals to her.
Still no kidney function. She had her physical at 7:00 AM this morning (I forgot what it's like to get up this early) and was cleared for peritoneal surgery next week. They will need to give her a special blood clotting drug and will control her blood pressure through an IV drip. She is nervous about the surgery, but very excited about being able to do her dialysis at home while she sleeps.
Good News
Her MRI taken last week, came back clean. Almost all the damage done as a result of her seizures in February has been reversed. Great, great news!
Also, her blood labs have stayed within targeted levels now for about a week, so Dr Kouides has stopped, for now, her plasmapheresis treatments. We're very hopeful that eliminating these three times per week treatments will help Alyssa gain some much needed energy. She will have blood drawn two times per week to ensure that she stays within her target numbers.
She did shed a few tears on the way home after her final treatment Monday. She has become very attached to her Red Cross nurses that have been with us constantly since this all started back on January 14. As we stated in prior blogs. Alyssa's blood disorder was 98% fatal before apheresis was developed so we certainly are thankful for this life saving process. We also cannot thank the Red Cross nurses enough for the care, compassion, guidance and friendship they provided in addition to this essential treatment. They will always be part of our "extended" family.
Alyssa is still a very sick young lady, but we are going to celebrate every "victory" that she achieves and continue to look forward to a brighter future for her.
dd
Saturday, March 7, 2009
3/7/09 - Two good days in a row!
Two uneventful treatments in a row, which is always good news!
Friday, Alyssa received her plasmapheresis treatment and for only the second time since she became ill, her hematocrit(HCT)was above 30 (31.) This could be due to the two units of blood that she received or Thursday...or it may be a sign of good things to come. The rest of her labs were also very good; so good that we heard whispers from the doctors that they may begin tapering her plasmapheresis treatments next week. This would be a welcome relief for Alyssa as the daily need for either plasmapheresis or dialysis really takes a toll on her body. More lab work will be drawn Monday, followed by a treatment. If the results are good, Wednesday's treatment will be skipped. Then we'll go day-to-day depending on what her blood work shows.
Dialysis today went well. Unlike the last two treatments, she was able to get through to the end without any clotting issues enabling her to hit her target weight.
Alyssa had planned on going to the NYS Hockey regionals this afternoon in Brockport, but was just to tired from dialysis. We're happy to report that Athena won the game and now moves on to the state semi-finals. Reports from her brothers tell us that the game was well refereed (by our next door neighbor, Mark.)
Don't forget to set your clocks ahead tonight.
dd
Friday, Alyssa received her plasmapheresis treatment and for only the second time since she became ill, her hematocrit(HCT)was above 30 (31.) This could be due to the two units of blood that she received or Thursday...or it may be a sign of good things to come. The rest of her labs were also very good; so good that we heard whispers from the doctors that they may begin tapering her plasmapheresis treatments next week. This would be a welcome relief for Alyssa as the daily need for either plasmapheresis or dialysis really takes a toll on her body. More lab work will be drawn Monday, followed by a treatment. If the results are good, Wednesday's treatment will be skipped. Then we'll go day-to-day depending on what her blood work shows.
Dialysis today went well. Unlike the last two treatments, she was able to get through to the end without any clotting issues enabling her to hit her target weight.
Alyssa had planned on going to the NYS Hockey regionals this afternoon in Brockport, but was just to tired from dialysis. We're happy to report that Athena won the game and now moves on to the state semi-finals. Reports from her brothers tell us that the game was well refereed (by our next door neighbor, Mark.)
Don't forget to set your clocks ahead tonight.
dd
Thursday, March 5, 2009
3/4/09 - Oh What a Night!
Great dinner, great play and best of all great friends! It was a special night for Alyssa, Debbie and Dave as Alyssa continued to stretch her boundaries. We joined 40 new and old friends at Tapas' for a great dinner followed by the play, Jersey Boys at the Auditorium Theatre. Everything was perfect, especially watching Alyssa enjoying herself so much. She has always loved Broadway shows, so this was the perfect event for her. A special thanks to Jim and Susan LeBeau for putting this all together and especially for including us. You two are the best!
Today, Alyssa had her normal dialysis treatment and also received two units of plasma. Her hematocrit(HCT) had dropped to 22, which is her target level for requiring a transfusion. The transfusion is done as part of her dialysis treatment. As with the last two treatments, she had trouble with the dialysis machine clotting towards the end of her treatment, so they had to cut it short by 20 minutes. By shortening her treatment, they are not able to remove the targeted amount of fluid, so we will have to watch this in the coming days.
Tonight hasn't been a real good night. Alyssa has been experiencing nausea and a general achy all over feeling. Her BP has been elevated a little, but no fever. It may just be a reaction to the two blood transfusions this morning; but as parents, we think the worst and it brings back memories that we don't want to relive.
dd
Today, Alyssa had her normal dialysis treatment and also received two units of plasma. Her hematocrit(HCT) had dropped to 22, which is her target level for requiring a transfusion. The transfusion is done as part of her dialysis treatment. As with the last two treatments, she had trouble with the dialysis machine clotting towards the end of her treatment, so they had to cut it short by 20 minutes. By shortening her treatment, they are not able to remove the targeted amount of fluid, so we will have to watch this in the coming days.
Tonight hasn't been a real good night. Alyssa has been experiencing nausea and a general achy all over feeling. Her BP has been elevated a little, but no fever. It may just be a reaction to the two blood transfusions this morning; but as parents, we think the worst and it brings back memories that we don't want to relive.
dd
Tuesday, March 3, 2009
3/4/09 - Up and About
We've had several busy days in a row, so I apologize for not updating sooner. We keep hoping that a light day will pop up her schedule, but it's just not meant to be!
Alyssa ventured out into the real world on Sunday, going to the ESL Sports Centre to see Athena play Fairport in the Section V Hockey final. Athena won (sorry Heidi) so a good time was had by all the Deff's. Several of the players are good friends with Ryan and Kyle. Alyssa enjoyed her first outing, although she slept for hours upon returning home.
Monday saw a return to plasmapheresis at RGH. Her HCT level had dropped to 22, which will mean that she will need another blood transfusion. Alyssa is begun receiving the drug, Aranesp, which should help to build up her HCT count, and eventually eliminate the need for blood transfusions. Relative to plasmapheresis, the plan is to try two treatments this week - Monday and Friday, then possibly one treatment next week.
Following her plasmapheresis treatment, we drove over to the dialysis treatment center to be briefed on the peritoneal form of dialysis. Alyssa has decided that she wants to switch to this format as it will give her move flexibility. I will use the next update to explain this process and it's impact on Alyssa.
We finally got home around 5:00PM, so it was a really long day for Alyssa.
Tuesday wasn't going to be any easier. Dialysis was moved up to 9:00AM so that Alyssa could meet with the peritoneal surgeon in the afternoon. During dialysis, Alyssa had the opportunity to meet 1/1 with a 38 year old woman who is currently using peritoneal dialysis. She was very helpful in helping to eliminate some of Alyssa's concerns.
Following dialysis, we went over to see Dr Kurchin to discuss the surgical process of implanting the catheter into Alyssa's peritoneal cavity. It is a relatively basic surgery that will be performed on an outpatient basis. She should be in and out within three hours. Continuing with her string of great doctors, Dr Kurchin made a big hit with Alyssa. He is very engaging and informative. He's also French with an accent that makes him sound exactly like Lumierre from Beauty and the Beast. He is the only surgeon in this area that performs this procedure with a scope, which makes it a less invasive procedure. She is scheduled for the surgery on March 18th.
It's now Wednesday morning and we have already had blood drawn and met with her hematologist, Dr Kouides at RGH. We still haven't anything from the University of Iowa relative to her genetic testing. Dr K has put together treatment plans that address three potential results that could come from the testing. I'll share those on a "slow news day."
Shuffling down the hallway of RGH, we are now in the Neurology area where Alyssa is presently undergoing a MRI brain scan. This is a follow-up procedure to ensure that the fluid which caused her seizures is no longer on her brain. It's a painless procedure, but you are in a very small chamber that sounds like the inside of a washing machine. ADD and claustrophobics should avoid if possible!
We're finishing off today with the three of us going to Tapas 177 for dinner and then to Jersey Boys with a group of friends. Alyssa has always been a big fan of Broadway musicals. It will a full day, but one she says she up for.
dd
Alyssa ventured out into the real world on Sunday, going to the ESL Sports Centre to see Athena play Fairport in the Section V Hockey final. Athena won (sorry Heidi) so a good time was had by all the Deff's. Several of the players are good friends with Ryan and Kyle. Alyssa enjoyed her first outing, although she slept for hours upon returning home.
Monday saw a return to plasmapheresis at RGH. Her HCT level had dropped to 22, which will mean that she will need another blood transfusion. Alyssa is begun receiving the drug, Aranesp, which should help to build up her HCT count, and eventually eliminate the need for blood transfusions. Relative to plasmapheresis, the plan is to try two treatments this week - Monday and Friday, then possibly one treatment next week.
Following her plasmapheresis treatment, we drove over to the dialysis treatment center to be briefed on the peritoneal form of dialysis. Alyssa has decided that she wants to switch to this format as it will give her move flexibility. I will use the next update to explain this process and it's impact on Alyssa.
We finally got home around 5:00PM, so it was a really long day for Alyssa.
Tuesday wasn't going to be any easier. Dialysis was moved up to 9:00AM so that Alyssa could meet with the peritoneal surgeon in the afternoon. During dialysis, Alyssa had the opportunity to meet 1/1 with a 38 year old woman who is currently using peritoneal dialysis. She was very helpful in helping to eliminate some of Alyssa's concerns.
Following dialysis, we went over to see Dr Kurchin to discuss the surgical process of implanting the catheter into Alyssa's peritoneal cavity. It is a relatively basic surgery that will be performed on an outpatient basis. She should be in and out within three hours. Continuing with her string of great doctors, Dr Kurchin made a big hit with Alyssa. He is very engaging and informative. He's also French with an accent that makes him sound exactly like Lumierre from Beauty and the Beast. He is the only surgeon in this area that performs this procedure with a scope, which makes it a less invasive procedure. She is scheduled for the surgery on March 18th.
It's now Wednesday morning and we have already had blood drawn and met with her hematologist, Dr Kouides at RGH. We still haven't anything from the University of Iowa relative to her genetic testing. Dr K has put together treatment plans that address three potential results that could come from the testing. I'll share those on a "slow news day."
Shuffling down the hallway of RGH, we are now in the Neurology area where Alyssa is presently undergoing a MRI brain scan. This is a follow-up procedure to ensure that the fluid which caused her seizures is no longer on her brain. It's a painless procedure, but you are in a very small chamber that sounds like the inside of a washing machine. ADD and claustrophobics should avoid if possible!
We're finishing off today with the three of us going to Tapas 177 for dinner and then to Jersey Boys with a group of friends. Alyssa has always been a big fan of Broadway musicals. It will a full day, but one she says she up for.
dd
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