Scrappergirl
Member
Hello all
Sorry it has been so long since I gave an update but it has been a busy month. Yesterday was 1 month post op for Landon and several others. As you recall, Landon, age 5, underwent a Ross procedure and received a new porcine Aortic valve. We spent a total of 10 days in Lucile Packard Children's Hospital. Dr. Frank Hanley did the px. Can't say enough good things about the facility, nurses and Dr. Hanley. Just hope he is still there when we have to go back.
So how is he doing. Well the one thing that I didn't post was that they found a yeast growing on his native valve when it was sent to pathology post surgery. A yeast you say, yup. Where did he get that, that is the million dollar question. We have no idea how he contract that little bug or even when. He was 100% assymptomatic prior to surgery which is confounding to the doctors. To treat this, he has to receive 42 days of amphotericin (an anti-fungal) via infusion. He got a PICC line prior to leaving the hospital. We had our first few infusions in the hospital and then continued them at our clinic here. We finally have gotten it set up to where we can do them at home. We are on day 27 of 42. These infusions take around 3.5 to 4 hours to complete. Imagine that for a very active 5 year old. He tolerates them very well and had all the nurses at the infusion center wrapped around his little finger.
Cardaic wise, he is doing great. He had his follow cardiology appt right after we got back. The cardiologist was quite surprised at the yeast finding. All docs have come to the conclusion that this probably created the degradation of the valve. At his appt last year (2007) there was no value issue, just the stenosis. We have another appt after the infusions and then will be on 6 month appts. Everything looked great at his appt. We started back to school on January 5, which was a little scarey but he is doing well. He is on limited recess time as the weather is a little chilly here in Montana. He finds spending time in the office at recess quite boring. Hopefully it is incentive to keep him out of there later in his school years
He also can't do PE til he gets his picc line out.
So we will see what the future holds after Jan 24 (last infusion). I need to have some discussions with his PCP and the infectious disease boys.
Hope all is going well for everyone.
Sorry it has been so long since I gave an update but it has been a busy month. Yesterday was 1 month post op for Landon and several others. As you recall, Landon, age 5, underwent a Ross procedure and received a new porcine Aortic valve. We spent a total of 10 days in Lucile Packard Children's Hospital. Dr. Frank Hanley did the px. Can't say enough good things about the facility, nurses and Dr. Hanley. Just hope he is still there when we have to go back.
So how is he doing. Well the one thing that I didn't post was that they found a yeast growing on his native valve when it was sent to pathology post surgery. A yeast you say, yup. Where did he get that, that is the million dollar question. We have no idea how he contract that little bug or even when. He was 100% assymptomatic prior to surgery which is confounding to the doctors. To treat this, he has to receive 42 days of amphotericin (an anti-fungal) via infusion. He got a PICC line prior to leaving the hospital. We had our first few infusions in the hospital and then continued them at our clinic here. We finally have gotten it set up to where we can do them at home. We are on day 27 of 42. These infusions take around 3.5 to 4 hours to complete. Imagine that for a very active 5 year old. He tolerates them very well and had all the nurses at the infusion center wrapped around his little finger.
Cardaic wise, he is doing great. He had his follow cardiology appt right after we got back. The cardiologist was quite surprised at the yeast finding. All docs have come to the conclusion that this probably created the degradation of the valve. At his appt last year (2007) there was no value issue, just the stenosis. We have another appt after the infusions and then will be on 6 month appts. Everything looked great at his appt. We started back to school on January 5, which was a little scarey but he is doing well. He is on limited recess time as the weather is a little chilly here in Montana. He finds spending time in the office at recess quite boring. Hopefully it is incentive to keep him out of there later in his school years
He also can't do PE til he gets his picc line out. So we will see what the future holds after Jan 24 (last infusion). I need to have some discussions with his PCP and the infectious disease boys.
Hope all is going well for everyone.
