The doctor told us today that the cultures drawn on Tuesday just before we were discharged are officially negative. He drew another culture today, only because that's what the doctor from the hospital wanted. But, he doesn't feel that James has an infection. In fact, he checked his white count and it was normal. Incidentally, his hemoglobin was 11.3. That is REALLY good for James. Let's pray that James can simply enjoy the rest of the summer.
As far as the MRI results...I have decided to "hold on." I have started him on supplements that should help with edema, should that be what was really on the MRI. If we do another scan in about 3-4 weeks, and make it a PET scan or spectroscopy, we should be able to see what is tumor and what is something else and also see if anything has improved. Please continue to pray for James - I'm not sure how...but God does.
Friday, July 18, 2008
Tuesday, July 15, 2008
"We've been sprung!"
Those were Aunt Laura's exact words as we drove out of the parking garage of the hospital. Dr. Cortlandt, the pediatric attending, and I came to a compromise (she really is a good doctor - I like her). She agreed to let us go home if we had a blood culture drawn before we left and then another blood culture drawn this Friday at the pediatrician. We agreed.
Poor James had already had two IV lines placed (which take several tries to get in) and multiple blood draws from his arm. So, it was getting to the point that each attempt was a kicking and screaming fit (with lots of claims that he would rather die than have it done). So, I promised him a new game if he did a good job for this last stick before being discharged. Bless his heart...he wanted that game so bad - and new that he wasn't going to want to be still for it - that HE asked Aunt Laura to hold his arm down "really hard" so that he wouldn't move. I WAS SO PROUD OF HIM - he really is the bravest little guy I know.
Poor James had already had two IV lines placed (which take several tries to get in) and multiple blood draws from his arm. So, it was getting to the point that each attempt was a kicking and screaming fit (with lots of claims that he would rather die than have it done). So, I promised him a new game if he did a good job for this last stick before being discharged. Bless his heart...he wanted that game so bad - and new that he wasn't going to want to be still for it - that HE asked Aunt Laura to hold his arm down "really hard" so that he wouldn't move. I WAS SO PROUD OF HIM - he really is the bravest little guy I know.
The "infectious disease" dilemma
During James very first hospital stay in December of 1998 at only 11 months old, the infectious disease service kept us longer than I wanted to stay. And no hospital stay since then has been any different, including this one.
In the past, though, I have fought to have James discharged so that we could go home and we would treat him there - even if it meant using IV antibiotics at home.
But, the difference this time is that there is ABSOLUTELY NO indication that we have anything to treat. James cultures from his catheter were positive - so it was removed, taking the infection with it. The cultures taken from his arm before AND after the removal of the catheter have been negative. The culture of his spinal fluid was negative. His white count is normal. Yet, infectious disease insists that he has IV vancomycin (one of your strongest antibiotics) simply because James is at risk of infection of his shunts because of the hardware in his head. Well, guess what.....James is at risk of infection of the hardware in his head EVERY DAY OF HIS LIFE.
The problem is that James has not been able to keep an IV line longer than a few hours this entire hospital stay. The last one infiltrated this morning and put vancomycin under his skin, leaving blisters. To give him IV antibiotiocs, we would have to start yet another IV line (torture for James and probably nigh impossible to do) OR take him to the OR and place a PICC line for antibiotics for an infection that does not exist.
To me, the risk of having an overkill of antibiotics - thus putting him at risk of becoming antibiotic-resistant is greater than the risk that his shunts will become infected when there is no visible sign of infection left in him.
So, here we sit.....waiting and waiting.....hoping to get home soon. We'll keep you posted.
In the past, though, I have fought to have James discharged so that we could go home and we would treat him there - even if it meant using IV antibiotics at home.
But, the difference this time is that there is ABSOLUTELY NO indication that we have anything to treat. James cultures from his catheter were positive - so it was removed, taking the infection with it. The cultures taken from his arm before AND after the removal of the catheter have been negative. The culture of his spinal fluid was negative. His white count is normal. Yet, infectious disease insists that he has IV vancomycin (one of your strongest antibiotics) simply because James is at risk of infection of his shunts because of the hardware in his head. Well, guess what.....James is at risk of infection of the hardware in his head EVERY DAY OF HIS LIFE.
The problem is that James has not been able to keep an IV line longer than a few hours this entire hospital stay. The last one infiltrated this morning and put vancomycin under his skin, leaving blisters. To give him IV antibiotiocs, we would have to start yet another IV line (torture for James and probably nigh impossible to do) OR take him to the OR and place a PICC line for antibiotics for an infection that does not exist.
To me, the risk of having an overkill of antibiotics - thus putting him at risk of becoming antibiotic-resistant is greater than the risk that his shunts will become infected when there is no visible sign of infection left in him.
So, here we sit.....waiting and waiting.....hoping to get home soon. We'll keep you posted.
Sunday, July 13, 2008
Our hospital tour continues
James woke at 4:00 a.m. Saturday and began almost screaming in pain because his head hurt so bad. Then, he started throwing up. My sister, Laura, and I rushed him to the hospital (Levine Children's Hospital in Charlotte). I was convinced that we had another shunt malfunction and that he would be in the operating room within the hour. But, the CT scan looked fine. Throughout the day, he seemed to get better and by evening he was fine. Until that time, all labs and tests had come back normal, so we were baffled at what had made him so incredibly ill. But, this morning - just before we managed to get out the door for discharge - the culture from his central line came back positive. Since he has no known need for the line in the near future and since we have rarely had success at clearing a line infection - we have opted to just have the line removed. Hopefully, they will get him worked into the operating room schedule for Monday morning.
It has really been nice being at a hospital where we have family nearby to visit and let James know how much he is loved and prayed for. Pastor Edwards came right away on Saturday to see James (with Pastor Clark) and pray for him. Aunt Laura and Amanda, his cousin, came today to spend some time with him and encourage him. Amanda took a dry-erase marker and wrote pictures and messages all over the windows in James' room (there are many windows and they are big). Today, although James still did not remember everything - he did have a much brighter affect and laughed quite a bit.
Please continue to pray for James' future treatment. They did an MRI here and we are overnighting it to Dr. Burzynski. I might not be reading it right because there might be inflammation involved, but it looks like it's possible that the tumor has already grown. We'll see what the radiologist in Houston says. But, we are thinking that treatment is going to have to start soon.
I got a message from Barb - who worked with me at St. James in Chicago Heights and who has also been so helpful in doing the fundraiser for James, along with Kristin. She mentioned that they have finished the fundraiser and have sent the stuff here with the checks. First, I want to say "THANK YOU ALL WHO HELPED AND GAVE!!!!!!!" We REALLY appreciate all you have done. We will take the money and get James started on treatment right away. The information for the medical fund is on the left if anyone wants to help with James' treatment.
More than anything, we appreciate all your prayers.
It has really been nice being at a hospital where we have family nearby to visit and let James know how much he is loved and prayed for. Pastor Edwards came right away on Saturday to see James (with Pastor Clark) and pray for him. Aunt Laura and Amanda, his cousin, came today to spend some time with him and encourage him. Amanda took a dry-erase marker and wrote pictures and messages all over the windows in James' room (there are many windows and they are big). Today, although James still did not remember everything - he did have a much brighter affect and laughed quite a bit.
Please continue to pray for James' future treatment. They did an MRI here and we are overnighting it to Dr. Burzynski. I might not be reading it right because there might be inflammation involved, but it looks like it's possible that the tumor has already grown. We'll see what the radiologist in Houston says. But, we are thinking that treatment is going to have to start soon.
I got a message from Barb - who worked with me at St. James in Chicago Heights and who has also been so helpful in doing the fundraiser for James, along with Kristin. She mentioned that they have finished the fundraiser and have sent the stuff here with the checks. First, I want to say "THANK YOU ALL WHO HELPED AND GAVE!!!!!!!" We REALLY appreciate all you have done. We will take the money and get James started on treatment right away. The information for the medical fund is on the left if anyone wants to help with James' treatment.
More than anything, we appreciate all your prayers.
Wednesday, July 09, 2008
Memory - Visiting Winter
James is recovering very well, but the memory issue is very slow going. Yesterday, we went to visit Winter Gilland in the hospital. Winter has the same type of tumor as James. She was in the hospital to have her tonsils and adenoids taken out.
Today, James was able to recall many details of the visit. That is VERY encouraging.
We really appreciate all your prayers.
Today, James was able to recall many details of the visit. That is VERY encouraging.
We really appreciate all your prayers.
Subscribe to:
Posts (Atom)