The legend of the Phoenix has been around for centuries: The Phoenix is a supernatural creature, living for 500 years. Once its life span is over, the Phoenix builds its own funeral pyre, and throws itself into the flames. As it dies, it is reborn anew, and rises from the ashes to live another 500 years.
Right now Jack is in the flame portion of this process. His white blood count is at zero and he is in "protective isolation " and a special low- bacteria diet to reduce chance of infection since he has no immune system at this point. He also has a lack of red blood cells and platelets, so is at risk of bleeding and is very fatigued.
Any little task feels as it takes more energy than he is willing to spare and is not his talkative self. Getting an answer to a question has been a challenge at times. One of the things that he does do when up is to check for comments on the blog site – so for those of you that have figured out how to do that – keep them coming!! They are helpful and it is nice that everyone is sending good thoughts and prayers. I am sure he feels more than a little isolated right now.
His blood pressure on Tuesday when we went in for our daily check was 87/55 (heart rate 100) in a sitting position and 72/48 (heart rate 109) in a standing position. He got hooked up to an IV and had 5 hours of fluids to raise it to an acceptable level. He did sleep through most of the process but did wake up for lunch.
His blood pressure today when we went in for our daily check was 103/52 (heart rate 73) in a sitting position and 80/34 (heart rate 55) in a standing position so guess what we did again today!! He got hooked up to an IV and had 5 hours of fluids to raise it to an acceptable level. He was a little more alert today and once he woke for lunch, he stayed awake until 4:15 when they finally released him back into my care.
I got 2 more prescriptions to fill and I have to take his temperature every 4 hours - I am sure that will go over well at midnight and 4AM.
Hopefully Jack will get some energy soon. The first sign that engraftment is taking place is an increase in the white blood cell count and there is nowhere to go but up from here. (However, the doctors told me that we would probably be in this holding pattern until the weekend). I ask him every day if he is up to updating the blog since he set the bar very high (and he enjoyed doing it). I am sure that is the first thing that he will catch up on when he has the strength so you all will know when he is doing better.
Keep up in your thoughts and prayers – the support has been wonderful. C
Right now Jack is in the flame portion of this process. His white blood count is at zero and he is in "protective isolation " and a special low- bacteria diet to reduce chance of infection since he has no immune system at this point. He also has a lack of red blood cells and platelets, so is at risk of bleeding and is very fatigued.
Any little task feels as it takes more energy than he is willing to spare and is not his talkative self. Getting an answer to a question has been a challenge at times. One of the things that he does do when up is to check for comments on the blog site – so for those of you that have figured out how to do that – keep them coming!! They are helpful and it is nice that everyone is sending good thoughts and prayers. I am sure he feels more than a little isolated right now.
His blood pressure on Tuesday when we went in for our daily check was 87/55 (heart rate 100) in a sitting position and 72/48 (heart rate 109) in a standing position. He got hooked up to an IV and had 5 hours of fluids to raise it to an acceptable level. He did sleep through most of the process but did wake up for lunch.
His blood pressure today when we went in for our daily check was 103/52 (heart rate 73) in a sitting position and 80/34 (heart rate 55) in a standing position so guess what we did again today!! He got hooked up to an IV and had 5 hours of fluids to raise it to an acceptable level. He was a little more alert today and once he woke for lunch, he stayed awake until 4:15 when they finally released him back into my care.
I got 2 more prescriptions to fill and I have to take his temperature every 4 hours - I am sure that will go over well at midnight and 4AM.
Hopefully Jack will get some energy soon. The first sign that engraftment is taking place is an increase in the white blood cell count and there is nowhere to go but up from here. (However, the doctors told me that we would probably be in this holding pattern until the weekend). I ask him every day if he is up to updating the blog since he set the bar very high (and he enjoyed doing it). I am sure that is the first thing that he will catch up on when he has the strength so you all will know when he is doing better.
Keep up in your thoughts and prayers – the support has been wonderful. C
