Pete in MI
New member
Twice...
Posted 2 hours ago
...I've started to write an update and twice I deleted it. I was too tired to think... and I have a hard enough time thinking under normal circumstances.
We took Brian to Vanderbilt Wednesday to see about scheduling a surgery to debulk some tumors in an attempt to relieve him of some of his pain. His surgeon suggested we try to wait as long as possible because the tumors are growing back extremely fast. For example, the tumors on the bridge of his nose grew back larger than the original size in just a few weeks after surgery. Because Brian is going through puberty and his growth hormones are so active that when his body attempts to heal itself the tumors grow back at a much faster rate.
For now, he suggested we get with a pediatric pain management team here in town to see what options we have for pain control. The medicines that Brian is on now are not doing a very good job of controlling the pain.
Brian has been complaining of feeling dizzy and weak the last couple of weeks and Thursday he felt really bad. Friday morning I took him back to his pediatrician to have his blood levels checked again. His blood level was 35, down 5 points from last weeks visit. Brian's breath has a real strong odor to it, similar to a sinus infection and the antibiotic prescribed the previous visit didn't seem to help any.
His pediatrician decided to try a stronger antibiotic, rocephin, because he felt like Brian had a bad sinus infection and that if this would eliminate it some of his pain might be relieved also. It can only be injected and required two shots, one in each thigh. It was extremely painful and Brian didn't waste any time explaining how much he hated me for putting him through so much pain on top of the pain he was already in. Of course, he apologized later.
Saturday morning he had to have two more injections!! Thankfully, I had to work and Carol took him. I don't think I could have gone through that again. But, she said Brian did great and she only cried a bucket of tears. I am so thankful for Carol because she really is strong under these stressful situations. And guess what...I get to take him Monday morning for his third and last round of shots!! Hopefully this will work and help relieve some of the pain.
Brian slept soundly last night, for the first time in a long time. But, when I went in at 6:30am this morning to feed him and give him his meds his mouth and lips were covered with dried blood. I also noticed blood on his arms where he had wiped it off of his mouth. It appeared to be coming from his dry, cracked lips because I didn't see any blood on his sheets or pillow cases. I let him go back to sleep and he didn't wake up until about 8:30. He had a couple of spots of blood on his pajama bottoms and was a little concerned. I checked his bed and there was a couple of good sized blood stains on his comforter and a blankets so it looks more serious than we previously thought. Sometimes Brian will sit up in his sleep and that is how the blood drained on his comforter and pajamas.
Our hope is that the antibiotic is working and the blood is only draining from a pocket left over from his last surgery or bleeding episode. We can only hope and pray that is where it is coming from. Carol will keep a close eye on him today.
Thanks for your continued prayers!!
Doug, Carol and Brian
Posted 2 hours ago
...I've started to write an update and twice I deleted it. I was too tired to think... and I have a hard enough time thinking under normal circumstances.
We took Brian to Vanderbilt Wednesday to see about scheduling a surgery to debulk some tumors in an attempt to relieve him of some of his pain. His surgeon suggested we try to wait as long as possible because the tumors are growing back extremely fast. For example, the tumors on the bridge of his nose grew back larger than the original size in just a few weeks after surgery. Because Brian is going through puberty and his growth hormones are so active that when his body attempts to heal itself the tumors grow back at a much faster rate.
For now, he suggested we get with a pediatric pain management team here in town to see what options we have for pain control. The medicines that Brian is on now are not doing a very good job of controlling the pain.
Brian has been complaining of feeling dizzy and weak the last couple of weeks and Thursday he felt really bad. Friday morning I took him back to his pediatrician to have his blood levels checked again. His blood level was 35, down 5 points from last weeks visit. Brian's breath has a real strong odor to it, similar to a sinus infection and the antibiotic prescribed the previous visit didn't seem to help any.
His pediatrician decided to try a stronger antibiotic, rocephin, because he felt like Brian had a bad sinus infection and that if this would eliminate it some of his pain might be relieved also. It can only be injected and required two shots, one in each thigh. It was extremely painful and Brian didn't waste any time explaining how much he hated me for putting him through so much pain on top of the pain he was already in. Of course, he apologized later.
Saturday morning he had to have two more injections!! Thankfully, I had to work and Carol took him. I don't think I could have gone through that again. But, she said Brian did great and she only cried a bucket of tears. I am so thankful for Carol because she really is strong under these stressful situations. And guess what...I get to take him Monday morning for his third and last round of shots!! Hopefully this will work and help relieve some of the pain.
Brian slept soundly last night, for the first time in a long time. But, when I went in at 6:30am this morning to feed him and give him his meds his mouth and lips were covered with dried blood. I also noticed blood on his arms where he had wiped it off of his mouth. It appeared to be coming from his dry, cracked lips because I didn't see any blood on his sheets or pillow cases. I let him go back to sleep and he didn't wake up until about 8:30. He had a couple of spots of blood on his pajama bottoms and was a little concerned. I checked his bed and there was a couple of good sized blood stains on his comforter and a blankets so it looks more serious than we previously thought. Sometimes Brian will sit up in his sleep and that is how the blood drained on his comforter and pajamas.
Our hope is that the antibiotic is working and the blood is only draining from a pocket left over from his last surgery or bleeding episode. We can only hope and pray that is where it is coming from. Carol will keep a close eye on him today.
Thanks for your continued prayers!!
Doug, Carol and Brian
God Bless! Betty