I can't keep up
I will not be posting regularly for quite sometime. I will try to do a brief weekly summary but I can't guarantee I will have the time.
I brought wayfinder38 home Saturday night. Yet again they did not get him discharged until I could only use the 24 hour pharmacy. I finally lost it at 7:15 on Saturday and the night nurse who just came on got the brunt of my irritation and unhappiness. I had asked for a copy of Dick's lab work particularly his hemoglobin, hematocrit and creatinine level. I got the runnaround and 3 different answers as why they could not give them to me. wayfinder38 had spent the day sleeping and did not look like a person ready to go home. Sunday was OK. Monday and Tuesday he was running fevers again.
Monday we managed to get him to his hematology appointment. Hemoglobin was 9, Aranesp no longer works, when he gets over the infection they can treat the MDS with Revlimid. The Revlimid will severely depress his bone marrow and he will be neutropenic (no blood cells to speak of) but they can manage that. So now he is transfusion dependent so every time he gets blood he may get a new factor to screen for when they cross match blood. He received another letter letting him know they found a new factor at the last cross match. He will be checked every week now.
I learned how to hook up the Vancomycin to run through his PICC line, how to change the dressing on the abscess site and drain the tube. I will administer the Vanco twice a day. Do the eye drops 4 times a day, regular meds twice a day, new oral meds for the abscess once a day.
I could not get to the computer at all yesterday, I have not had half an hour at a time to be at the computer. It looks like that is how is will be for the foreseeable future. I learned today it might take months to get back the culture to confirm that BCG was in the abscess as well as the MRSA.
Today wayfinder38's hemoglobin was 7.5 and his creatine was up to 1.9. I phoned 4 doctors and home health and only heard from one physician directly. The infectious disease specialist spoke with me and will phone the urologist and the primary care. I phoned the hematologist, primary care, and urologist. I drove Dick to see the opthamologist, two trips to the pharmacy, Home health made a delivery, the physical therapist was here to do an evaluation and a RN will be coming this evening to take more blood to test his Vanco levels.
I have to figure out how to use the fax part of our new printer. One of the receptionist as a Dr. office suggested they could send us the lab reports by fax.
My home town in Oregon flooded. They were cut off and the National Guard had to come in and rescue people. The creek and river flooded. We lived above the creek and I only saw water on the road once. Now the whole downtown was flooded. I am so glad my Mother lives on high ground and doesn't need to leave home for anything. Son and family also live on a hill and are in no danger of flooding unless they venture out. They work in Seattle and DIL had to take another route to work due to a mudslide.
My mood is You Don't Want To Know, which is what one our foster sons used to tell us when we inquired as to how he was doing.
I brought wayfinder38 home Saturday night. Yet again they did not get him discharged until I could only use the 24 hour pharmacy. I finally lost it at 7:15 on Saturday and the night nurse who just came on got the brunt of my irritation and unhappiness. I had asked for a copy of Dick's lab work particularly his hemoglobin, hematocrit and creatinine level. I got the runnaround and 3 different answers as why they could not give them to me. wayfinder38 had spent the day sleeping and did not look like a person ready to go home. Sunday was OK. Monday and Tuesday he was running fevers again.
Monday we managed to get him to his hematology appointment. Hemoglobin was 9, Aranesp no longer works, when he gets over the infection they can treat the MDS with Revlimid. The Revlimid will severely depress his bone marrow and he will be neutropenic (no blood cells to speak of) but they can manage that. So now he is transfusion dependent so every time he gets blood he may get a new factor to screen for when they cross match blood. He received another letter letting him know they found a new factor at the last cross match. He will be checked every week now.
I learned how to hook up the Vancomycin to run through his PICC line, how to change the dressing on the abscess site and drain the tube. I will administer the Vanco twice a day. Do the eye drops 4 times a day, regular meds twice a day, new oral meds for the abscess once a day.
I could not get to the computer at all yesterday, I have not had half an hour at a time to be at the computer. It looks like that is how is will be for the foreseeable future. I learned today it might take months to get back the culture to confirm that BCG was in the abscess as well as the MRSA.
Today wayfinder38's hemoglobin was 7.5 and his creatine was up to 1.9. I phoned 4 doctors and home health and only heard from one physician directly. The infectious disease specialist spoke with me and will phone the urologist and the primary care. I phoned the hematologist, primary care, and urologist. I drove Dick to see the opthamologist, two trips to the pharmacy, Home health made a delivery, the physical therapist was here to do an evaluation and a RN will be coming this evening to take more blood to test his Vanco levels.
I have to figure out how to use the fax part of our new printer. One of the receptionist as a Dr. office suggested they could send us the lab reports by fax.
My home town in Oregon flooded. They were cut off and the National Guard had to come in and rescue people. The creek and river flooded. We lived above the creek and I only saw water on the road once. Now the whole downtown was flooded. I am so glad my Mother lives on high ground and doesn't need to leave home for anything. Son and family also live on a hill and are in no danger of flooding unless they venture out. They work in Seattle and DIL had to take another route to work due to a mudslide.
My mood is You Don't Want To Know, which is what one our foster sons used to tell us when we inquired as to how he was doing.