Family and friends,
They have Bob off the Versed since yesterday (which is the medication they used to put Bob under). He has his eyes opened and making small progress like shaking his head yes and no. He can move his hands about an inch and will require extensive physical therapy. Bob's bleeding is still going on and his red count (hemoglobin) went from 9.3 to 7.9 during the night. I pushed the nurses and GI doc this morning to order the capsule endoscopy for Monday and it's been approved by the GI doc's office, Bob's insurance, but we are still waiting on approval from the hospital. His kidney function is getting better slowly by the day and he's off the dialysis. Other than that everything else is the same. I can't begin to thank everyone enough for all the kind words, emails and support.
Love and thanks,
Michele
Friday, July 31, 2009
Thursday, July 30, 2009
Tracheotomy a success
Family and friends,
Last night I brought a Christmas photo of Bob into his room and posted it up on the wall. When I called the night nurse this morning at 6am to find out when Bob's surgery was scheduled she said she had a surprise for me. When April and I got to the hospital we were surprised to find that she had shaved Bob's face and head for us! (He hadn't gotten a shave in 37 days and with the chemo his hair was patchy - now he looks like a skinnier version of the old Bob!) Bob had the tracheotomy surgery today at 7:30am. Although the doctor said he had to cauterize the majority of the area because Bob was bleeding more than average, overall the surgery was a success. Now they relocated the breathing tube that also sucks lung mucus, from his mouth into the traech in his throat; and they moved the stomach tube from his mouth to his nose. For the first time in 17 days he'll finally be able to close his mouth! Also they have decided since the traech is much less scary for him they are going to wake him up fully. They took him off the sedation medicine a few hours ago, and he has his eyes open now, but it may take a day or so until he fully comes around. Then the weening process can begin.
Now my mom and aunt April were there this morning when the surgery finished. We were all sitting around with Bob while he was recovering and the strangest thing happened. The GI doctor came into the room and said that he spoke with the surgeon and the other GI doctor and that if Bob continues to show signs of bleeding that they will give him a "camera pill" that he will swallow so they can find the source of the bleed non-surgically with video. (I suggested this last week, but they told me no, it can only be done as an outpatient procedure). Here' s the strange thing: The doctor told me that they were going to get the hospital to pick up the tab on the procedure... I'm not going to say no, but I also know there's no such thing as free. Maybe it's because I said I wanted to move Bob from the hospital to one that has more technology. That's what I'm hoping at least. Anyway, I'm hoping that the camera pill won't be necessary and that he stops bleeding on his own. We're going to have to wait and see. Keep your fingers crossed!
Love and thanks,
Michele
PS. I'd like to thank all the people in my office at Fannie Mae. They were nice enough to sign a card asking for a speedy recovery and send prayers and caring words for Bob among other things. It was very kind of them!!
Last night I brought a Christmas photo of Bob into his room and posted it up on the wall. When I called the night nurse this morning at 6am to find out when Bob's surgery was scheduled she said she had a surprise for me. When April and I got to the hospital we were surprised to find that she had shaved Bob's face and head for us! (He hadn't gotten a shave in 37 days and with the chemo his hair was patchy - now he looks like a skinnier version of the old Bob!) Bob had the tracheotomy surgery today at 7:30am. Although the doctor said he had to cauterize the majority of the area because Bob was bleeding more than average, overall the surgery was a success. Now they relocated the breathing tube that also sucks lung mucus, from his mouth into the traech in his throat; and they moved the stomach tube from his mouth to his nose. For the first time in 17 days he'll finally be able to close his mouth! Also they have decided since the traech is much less scary for him they are going to wake him up fully. They took him off the sedation medicine a few hours ago, and he has his eyes open now, but it may take a day or so until he fully comes around. Then the weening process can begin.
Now my mom and aunt April were there this morning when the surgery finished. We were all sitting around with Bob while he was recovering and the strangest thing happened. The GI doctor came into the room and said that he spoke with the surgeon and the other GI doctor and that if Bob continues to show signs of bleeding that they will give him a "camera pill" that he will swallow so they can find the source of the bleed non-surgically with video. (I suggested this last week, but they told me no, it can only be done as an outpatient procedure). Here' s the strange thing: The doctor told me that they were going to get the hospital to pick up the tab on the procedure... I'm not going to say no, but I also know there's no such thing as free. Maybe it's because I said I wanted to move Bob from the hospital to one that has more technology. That's what I'm hoping at least. Anyway, I'm hoping that the camera pill won't be necessary and that he stops bleeding on his own. We're going to have to wait and see. Keep your fingers crossed!
Love and thanks,
Michele
PS. I'd like to thank all the people in my office at Fannie Mae. They were nice enough to sign a card asking for a speedy recovery and send prayers and caring words for Bob among other things. It was very kind of them!!
Wednesday, July 29, 2009
Bob is still fighting!
Family and friends,
I had the opportunity to speak with the GI doctor that did Bob's small intestine surgery on Saturday. I cornered him in the ICU and asked him to explain why he didn't go all the way to the bottom of his intestine. He gave me a song and dance and blamed the surgeon, but finally admitted that they did not look internally with the scope at 40% of Bob's small intestine and that there is a good possibility that Bob could have more ulcers there. Speaking of ulcers, I then spoke with the pulmonary doctor who proceeded to tell me that Bob has an ulcer on his trachea. She said that when Bob wakes up he may have to have this lasered in the future because it could lead to narrowing of the area. I didn't sleep that much last night and called the nurse at 2am to see how Bob was doing. She said that he needed a tube to be put into his colon to collect all the bleeding because it was so frequent. Even though he was given 4 pints of blood yesterday and 3 plasmas, his counts still went down. After hearing this news at 2am, I couldn't sleep the rest of the night. I was very angry at the GI doc for what I felt like was a half done job, and I looked online at the best GI hospitals in the country. Massachucetts General showed up ranked #4. I figured I'd get a quote to see how much it would cost to have Bob transferred there via ambulatory jet with ICU capabilities. The 2 quotes I received were $16,000 and $18,000. Needless to say I spoke with his sister and we're just going to keep him at Bethesda.
I went to the hospital this morning before work and saw Bob. He was asleep. I talked to him and tried to get some of the doctors on the phone. I insisted with the nurse that they perform a bleeding scan on him today. (they have it scheduled for 2pm) Then I spoke with the infectious disease doctor. He said Bob's C.Diff infection should last 2 weeks he's hoping. After I got to work I called to check on Bob and I was able to catch the pulmonologist again. She told me the results of the CT scan from last night came in and it showed that Bob has "necrotizing pnumonia" and that some of his lung tissue was dying. I asked her if Bob's blood counts were good enough for him to get the traecheotomy tomorrow and she said they were going to give him more blood, plasma and vitamin K and that yes she thought he could proceed tomorrow. She said surprisingly that Bob's breathing was doing pretty good and that she was going to lower the oxygen to 28%.
It amazes me that despite all the things that are being thrown at Bob that he is still kicking ass. Bob is a true fighter and is holding his own. I have to believe he's going to make it through!
Please continue to keep Bob in your thoughts and prayers.
Love and thanks,
Michele
I had the opportunity to speak with the GI doctor that did Bob's small intestine surgery on Saturday. I cornered him in the ICU and asked him to explain why he didn't go all the way to the bottom of his intestine. He gave me a song and dance and blamed the surgeon, but finally admitted that they did not look internally with the scope at 40% of Bob's small intestine and that there is a good possibility that Bob could have more ulcers there. Speaking of ulcers, I then spoke with the pulmonary doctor who proceeded to tell me that Bob has an ulcer on his trachea. She said that when Bob wakes up he may have to have this lasered in the future because it could lead to narrowing of the area. I didn't sleep that much last night and called the nurse at 2am to see how Bob was doing. She said that he needed a tube to be put into his colon to collect all the bleeding because it was so frequent. Even though he was given 4 pints of blood yesterday and 3 plasmas, his counts still went down. After hearing this news at 2am, I couldn't sleep the rest of the night. I was very angry at the GI doc for what I felt like was a half done job, and I looked online at the best GI hospitals in the country. Massachucetts General showed up ranked #4. I figured I'd get a quote to see how much it would cost to have Bob transferred there via ambulatory jet with ICU capabilities. The 2 quotes I received were $16,000 and $18,000. Needless to say I spoke with his sister and we're just going to keep him at Bethesda.
I went to the hospital this morning before work and saw Bob. He was asleep. I talked to him and tried to get some of the doctors on the phone. I insisted with the nurse that they perform a bleeding scan on him today. (they have it scheduled for 2pm) Then I spoke with the infectious disease doctor. He said Bob's C.Diff infection should last 2 weeks he's hoping. After I got to work I called to check on Bob and I was able to catch the pulmonologist again. She told me the results of the CT scan from last night came in and it showed that Bob has "necrotizing pnumonia" and that some of his lung tissue was dying. I asked her if Bob's blood counts were good enough for him to get the traecheotomy tomorrow and she said they were going to give him more blood, plasma and vitamin K and that yes she thought he could proceed tomorrow. She said surprisingly that Bob's breathing was doing pretty good and that she was going to lower the oxygen to 28%.
It amazes me that despite all the things that are being thrown at Bob that he is still kicking ass. Bob is a true fighter and is holding his own. I have to believe he's going to make it through!
Please continue to keep Bob in your thoughts and prayers.
Love and thanks,
Michele
Tuesday, July 28, 2009
Bob is STILL BLEEDING
Family and Friends,
I am very discouraged today. Bob tested positive for a bowel infection called cdiff . "C. diff," is a bacterium that can cause symptoms ranging from diarrhea to life-threatening inflammation of the colon. Illness from C. difficile most commonly affects older adults in hospitals or in long term care facilities and typically occurs after use of antibiotic medications. In recent years, C. difficile infections have become more frequent, more severe and more difficult to treat. Because of this they had to take out the pic line in his arm, switch it to his other arm and now they have to take his blood pressure from his leg because his arms can't handle it.
To add insult to injury, I spoke with the docs yesterday regarding Bob's surgery and I found out the whole truth which made me very upset: When the GI doc and surgeon performed Bob's operation on Saturday they went down half way into Bob's intestine, found that huge ulcer and stopped. Come to find out there was still 15 feet of intestine that they didn't look at with a scope, all they did was inspect it on the outside. If Bob has ulcers in his stomach, and a huge ulcer in his intestine, I just don't understand why they didn't finish the job. When I asked them, they said it was too deep and they were worried that they might perferate the intestine. I did not however ask them why they just didn't the scope out of Bob's mouth and stick it right at the site where they were cutting and start there. They said they were confident that the spot where they cut was the culprit of all of Bob's problems.
I really hope that they are right, but I am a realist and I don't believe that is the case. It's been 2 1/2 days now since his surgery and he is bleeding both more frequently and with more volume. This concerns me. His platelets have dropped 100,000 to 220,000 and although they are giving him blood, 4 units a day with plasma the last 2 days, his red blood count has not risen. I asked the surgeon if he was concerned and he said he still believed Bob was bleeding out the remainder from his operation.
With regard to his traecheotomy, I was surprised when I spoke to the pulmonologist yesterday. I was expecting her to make me sign the waivers to immediately do the traech. She said however that Bob's blood gas was in the normal range and that he was only breathing with 20% oxygen so she wanted to give him the benefit of the doubt and wake him up and see if he could breathe on his own. She woke him up and the good news is that he's still with us. He can recognize faces and blink to communicate. However yesterday they did not believe he was strong enough to breathe on his own. The pulmo doc said that it would be the surgeon who would perform the traech operation. When I spoke to the surgeon however he wanted to do the traech on Thursday. He said he wanted Bob's bleeding issues to be handled first. I knew he was concerned about the bleeding, I guess he just didn't want to admit it. So in the meanwhile for the next two days, they are going to wake him up for an hour or so and see if possibly his breathing is getting stronger so that maybe he doesn't need the traech after all.
I'm very upset at this whole bleeding situation if you couldn't tell. But everyday I have to remind myself to be grateful for little things that Bob has accomplished. These are the things I am grateful for: that Bob can recoginze people. That shows us that after 15 days he's still there. I'm grateful that his blood gas is in the normal range, and I am grateful that Bob's kidneys are getting back to normal and that he hasn't needed dialysis in the last 3 days. I am grateful that Alywn Cosgrove called me yesterday and gave me a kick in the butt to keep me motivated, and most importantly I am grateful that no one including the doctors have given up hope. I appreciate all the kind words and support everyone is sending. To be honest, if I didn't have Bob's aunt and uncle here helping me get through this, I think I would have had a nervous breakdown by now. All the emails and words of encouragement have been wonderful as well. Thank you so much.
Bob has hit a rough patch and is still fighting like hell. Please continue to pray for him.
Love and thanks,
Michele
I am very discouraged today. Bob tested positive for a bowel infection called cdiff . "C. diff," is a bacterium that can cause symptoms ranging from diarrhea to life-threatening inflammation of the colon. Illness from C. difficile most commonly affects older adults in hospitals or in long term care facilities and typically occurs after use of antibiotic medications. In recent years, C. difficile infections have become more frequent, more severe and more difficult to treat. Because of this they had to take out the pic line in his arm, switch it to his other arm and now they have to take his blood pressure from his leg because his arms can't handle it.
To add insult to injury, I spoke with the docs yesterday regarding Bob's surgery and I found out the whole truth which made me very upset: When the GI doc and surgeon performed Bob's operation on Saturday they went down half way into Bob's intestine, found that huge ulcer and stopped. Come to find out there was still 15 feet of intestine that they didn't look at with a scope, all they did was inspect it on the outside. If Bob has ulcers in his stomach, and a huge ulcer in his intestine, I just don't understand why they didn't finish the job. When I asked them, they said it was too deep and they were worried that they might perferate the intestine. I did not however ask them why they just didn't the scope out of Bob's mouth and stick it right at the site where they were cutting and start there. They said they were confident that the spot where they cut was the culprit of all of Bob's problems.
I really hope that they are right, but I am a realist and I don't believe that is the case. It's been 2 1/2 days now since his surgery and he is bleeding both more frequently and with more volume. This concerns me. His platelets have dropped 100,000 to 220,000 and although they are giving him blood, 4 units a day with plasma the last 2 days, his red blood count has not risen. I asked the surgeon if he was concerned and he said he still believed Bob was bleeding out the remainder from his operation.
With regard to his traecheotomy, I was surprised when I spoke to the pulmonologist yesterday. I was expecting her to make me sign the waivers to immediately do the traech. She said however that Bob's blood gas was in the normal range and that he was only breathing with 20% oxygen so she wanted to give him the benefit of the doubt and wake him up and see if he could breathe on his own. She woke him up and the good news is that he's still with us. He can recognize faces and blink to communicate. However yesterday they did not believe he was strong enough to breathe on his own. The pulmo doc said that it would be the surgeon who would perform the traech operation. When I spoke to the surgeon however he wanted to do the traech on Thursday. He said he wanted Bob's bleeding issues to be handled first. I knew he was concerned about the bleeding, I guess he just didn't want to admit it. So in the meanwhile for the next two days, they are going to wake him up for an hour or so and see if possibly his breathing is getting stronger so that maybe he doesn't need the traech after all.
I'm very upset at this whole bleeding situation if you couldn't tell. But everyday I have to remind myself to be grateful for little things that Bob has accomplished. These are the things I am grateful for: that Bob can recoginze people. That shows us that after 15 days he's still there. I'm grateful that his blood gas is in the normal range, and I am grateful that Bob's kidneys are getting back to normal and that he hasn't needed dialysis in the last 3 days. I am grateful that Alywn Cosgrove called me yesterday and gave me a kick in the butt to keep me motivated, and most importantly I am grateful that no one including the doctors have given up hope. I appreciate all the kind words and support everyone is sending. To be honest, if I didn't have Bob's aunt and uncle here helping me get through this, I think I would have had a nervous breakdown by now. All the emails and words of encouragement have been wonderful as well. Thank you so much.
Bob has hit a rough patch and is still fighting like hell. Please continue to pray for him.
Love and thanks,
Michele
Monday, July 27, 2009
Monday morning - possible tracheotomy
Family and Friends,
Yesterday Bob was recovering from his surgery. He was still bleeding alot but the doctors and nurses assured us that it is normal after surgery. He was also fighting a fever as well. By last night his fever had subsided and during the night he only had one episode of bleeding (which is better than 6 yesterday). The only thing is, I'm waiting to speak to Bob's pulmonologist about a possible tracheotomy. I'm not thrilled about them cutting into Bob's neck, but the respitory therapist told us yesterday that Bob's throat is irritated from the big tubes and the traech tubes are much smaller and will let him close his mouth. He's been under now for 15 days and they usually only like patients to be intebated for 14 before they either wake them up or do a traech. The nurse said that Bob should recover quicker with it. I'll speak to the doc this morning and chances are they'll do the procedure today. If Bob stops bleeding all together and stops having fevers they will consider waking him up. He opened his eyes yesterday for about 30 seconds and it breaks my heart because he looks confused and scared. I'll only to be able to exhale a sigh of relief when he's fully awake and able to breathe on his own.
Please keep Bob in your prayers.... he's almost there!
Love and thanks,
Michele
PS. I know people want to see Bob but he is still in intensive care and not concious. Both myself and the hospital are asking that only immediate family come visit him at this time until he wakes up. I know Bob wouldn't want anyone to see him like this. Thank you for your understanding.
Yesterday Bob was recovering from his surgery. He was still bleeding alot but the doctors and nurses assured us that it is normal after surgery. He was also fighting a fever as well. By last night his fever had subsided and during the night he only had one episode of bleeding (which is better than 6 yesterday). The only thing is, I'm waiting to speak to Bob's pulmonologist about a possible tracheotomy. I'm not thrilled about them cutting into Bob's neck, but the respitory therapist told us yesterday that Bob's throat is irritated from the big tubes and the traech tubes are much smaller and will let him close his mouth. He's been under now for 15 days and they usually only like patients to be intebated for 14 before they either wake them up or do a traech. The nurse said that Bob should recover quicker with it. I'll speak to the doc this morning and chances are they'll do the procedure today. If Bob stops bleeding all together and stops having fevers they will consider waking him up. He opened his eyes yesterday for about 30 seconds and it breaks my heart because he looks confused and scared. I'll only to be able to exhale a sigh of relief when he's fully awake and able to breathe on his own.
Please keep Bob in your prayers.... he's almost there!
Love and thanks,
Michele
PS. I know people want to see Bob but he is still in intensive care and not concious. Both myself and the hospital are asking that only immediate family come visit him at this time until he wakes up. I know Bob wouldn't want anyone to see him like this. Thank you for your understanding.
Sunday, July 26, 2009
Eureka, they found it!!
Family and friends,
Sorry I didn't write yesterday but it was a long day. Bob's Aunt April, Uncle Tom and I sat with most of his doctors yesterday and decided that Bob was stable enough to have exploratory surgery to try to find where the bleed in the small intestine was coming from. They did an enteroscopy this time where they fed a tube down his throat past his stomach and into his small intestine. The scope doesn't go the whole 30 feet of the small intestine so the surgeon had to make an incision above Bob's belly button, pull out his intestines and manually feed them through the scope for the GI doc. The doc says that the small intestine is like a sausage casing and there's no problem feeding through the tube. Anyway, they were worried that if Bob wasn't actively bleeding that they might now find anything. Boy were they wrong. Normally ulcers are found on the inside of the intestine. Bob's however was so big that it ate through the inside and you could see it visibly on the outside. The doctors were relieved that they found it when they did because they said that it could have torn open any day and Bob would have been in real trouble. The doc said that this was pretty rare having the ulcer go all the way through so he took a pic on his camera phone and sent it to me. They cut out 6-9 inches of his intestine in the affected area and reattached it with sewing and staples. They said the surgery went well. This was yesterday at 7pm.
Bob is back in his room recovering. He is still on a breathing machine and is not concious yet. As of this morning when I called the nurse they said that during the night Bob had some more bloody stools, but that had expected it as residual from what was left in the intestine. The other thing is that during the night Bob's red cell count dropped from 9.3 to 7.9 but the nurse thinks that's from post op oozing of the repair site. They are giving him more blood right now as a precaution. I am still worried but trying to be positive. I'm heading off to the hospital in a few minutes so that I can meet with the surgeon.
Thanks to everyone for keeping Bob in your thoughts and prayers.
Love and thanks,
Michele
Michele
Friday, July 24, 2009
Possible surgery tomorrow... source of bleed confirmed
Family and Friends,
Today was a busy day for Bob. We started off with a angiography and they did find that he was actively bleeding, however they were not sure if it was in the colon or small intestine. The GI doc then performed a colonoscopy and finally determined it was not coming from the colon but he could see blood pooling from the small intestine. After this, they completed the bronchoscopy where they removed a large amount of mucus from Bob's lungs. Then Aunt April and I met with the surgeon and he said that if Bob can get his red count up today that they would consider surgery in the morning. They will make a small incision above his belly button, pull out 30 feet of intestine, try to find the bleed with a scope, and either cut or try to cauterize the affected part. We talked his Oncologist into getting a 2nd GI opinion and the new doc will be performing the surgery over the weekend if Bob is well enough. Bob is currently receiving dialysis and since it is so late we are not able to see him again tonight.
In addition I have FINALLY got in touch with a blood coordinator at Florida Blood Centers. If you want to donate blood anywhere from Ocala to Ft. Meyers, Orlando to Ft. Lauderdale and YOUR BLOOD WILL GO DIRECTLY TO BOB, please visit:
http://www.floridasbloodcenters.org/donateNow/viewLocations.stml
and tell them you want to do a directed donation to Robert Youngs, Medical Record #316520.
Please keep Bobby in your prayers
Love and thanks,
Michele
Today was a busy day for Bob. We started off with a angiography and they did find that he was actively bleeding, however they were not sure if it was in the colon or small intestine. The GI doc then performed a colonoscopy and finally determined it was not coming from the colon but he could see blood pooling from the small intestine. After this, they completed the bronchoscopy where they removed a large amount of mucus from Bob's lungs. Then Aunt April and I met with the surgeon and he said that if Bob can get his red count up today that they would consider surgery in the morning. They will make a small incision above his belly button, pull out 30 feet of intestine, try to find the bleed with a scope, and either cut or try to cauterize the affected part. We talked his Oncologist into getting a 2nd GI opinion and the new doc will be performing the surgery over the weekend if Bob is well enough. Bob is currently receiving dialysis and since it is so late we are not able to see him again tonight.
In addition I have FINALLY got in touch with a blood coordinator at Florida Blood Centers. If you want to donate blood anywhere from Ocala to Ft. Meyers, Orlando to Ft. Lauderdale and YOUR BLOOD WILL GO DIRECTLY TO BOB, please visit:
http://www.floridasbloodcenters.org/donateNow/viewLocations.stml
and tell them you want to do a directed donation to Robert Youngs, Medical Record #316520.
Please keep Bobby in your prayers
Love and thanks,
Michele
Bleeding thoughout the night... doctor wrong
Family and Friends,
Bob bled significantly throughout the night. 3 episodes. He went from 8.1 all the way down to 7.2 and since then he has bled as well, so it's probably lower. All that progress Bob had made, and we're back to square one. They have to give him 2 units of blood this morning and it looks like after the bronchoscopy they will have to give him another angiography to try to find the bleeding. If Bob's GI doc cannot find the bleed today with the angiography I'm going to throw a fit and insist on another GI doc consult.
Please keep the prayers up for Bob.
Love and thanks,
Michele
Bob bled significantly throughout the night. 3 episodes. He went from 8.1 all the way down to 7.2 and since then he has bled as well, so it's probably lower. All that progress Bob had made, and we're back to square one. They have to give him 2 units of blood this morning and it looks like after the bronchoscopy they will have to give him another angiography to try to find the bleeding. If Bob's GI doc cannot find the bleed today with the angiography I'm going to throw a fit and insist on another GI doc consult.
Please keep the prayers up for Bob.
Love and thanks,
Michele
Thursday, July 23, 2009
Bob to require bronchoscopy
Family and Friends,
The doctors have decided NOT to give Bob dialysis today to see what happens. They are hoping that his kidneys are strong enough to start processing fluids. In addition, the sonogram that was performed showed thickening of the gall bladder. The gastroenterologist was not too concerned as he believed this may be caused from the food that he is receiving in his IV (TPN). The GI doc also seems to be convinced of the fact that Bob has stopped bleeding. I am a bit leery of his assessment since his last 3 blood draws have been 9.5,8.2,and 8.1 if they start increasing, then I'll be a believer.
Finally, I spoke with the pulmonologist. She said that she is concerned about the yeast in Bob's sputum. She said that his lung secretions are thick and discolored and he is not able to pass them when he coughs into the breathing tube. Tomorrow she will be performing a bronchoscopy where they fish a line through his breathing tube and into his trachea and bronchial tubes to clean him out. He has been fighting a fever all day and sweating profusely, he just finally broke the fever and is at 99.8
Please keep him in your thoughts and prayers
Love and thanks,
Michele
PS. People have been asking about blood donations. Here is some info:
To learn more about blood donation opportunities, visit www.givelife.org orcall 1-800-GIVE-LIFE (1-800-448-3543). Every minute of every day, someone needs blood. That blood can only come from a volunteer donor, a person like you who makes the choice to donate. There is no substitute for your donation. When you make a blood donation, you join a very select group. Currently only 3 out of every 100 people in America donate blood.
The doctors have decided NOT to give Bob dialysis today to see what happens. They are hoping that his kidneys are strong enough to start processing fluids. In addition, the sonogram that was performed showed thickening of the gall bladder. The gastroenterologist was not too concerned as he believed this may be caused from the food that he is receiving in his IV (TPN). The GI doc also seems to be convinced of the fact that Bob has stopped bleeding. I am a bit leery of his assessment since his last 3 blood draws have been 9.5,8.2,and 8.1 if they start increasing, then I'll be a believer.
Finally, I spoke with the pulmonologist. She said that she is concerned about the yeast in Bob's sputum. She said that his lung secretions are thick and discolored and he is not able to pass them when he coughs into the breathing tube. Tomorrow she will be performing a bronchoscopy where they fish a line through his breathing tube and into his trachea and bronchial tubes to clean him out. He has been fighting a fever all day and sweating profusely, he just finally broke the fever and is at 99.8
Please keep him in your thoughts and prayers
Love and thanks,
Michele
PS. People have been asking about blood donations. Here is some info:
To learn more about blood donation opportunities, visit www.givelife.org orcall 1-800-GIVE-LIFE (1-800-448-3543). Every minute of every day, someone needs blood. That blood can only come from a volunteer donor, a person like you who makes the choice to donate. There is no substitute for your donation. When you make a blood donation, you join a very select group. Currently only 3 out of every 100 people in America donate blood.
"Pulling for Bob Fundraiser"
Bob's friends at his old gym Southside Barbell and the Ft. Myers World Gym team will be putting on a backyard meet between the two gyms in a couple of weeks. They are planning on donating the proceeds to Bob's medical care. Stacey Motter, Ed Rectenwald and Charlie Fay thought it would be a great idea to do a deadlift fundraiser where people can donate by the pound. They are going to give out fundraiser sheets for everyone competing on the teams so they can get people to donate something. Even a penny a pound can add up. Although Charlie will be helping run the meet, Charlie will deadlift also to raise money and should be good for a minimum of 700lb even if he has a bad day. You can contact Charlie at Drcharlesfay@aol.com if you are interested in participating or donating . There will also be a post on http://www.elitefts.com/ as well.
As far as Bob is concerned, his numbers looked fantastic last night, but he slipped this monring. Late last night his platlets jumped to 250,000 his white cells jumped to 6.9, and his red which was most impressive was at 9.2 which meant that since they didn't give him any blood yesterday that he produced this on his own. The bad news is when I woke up this morning and called they said they repeated the test and his red blood had dropped to 8.2 which meant he bled during the night. The other counts remained the same. They also reduced the amount of oxygen he is needing on the breathing machine down to 30% which means he is slowly on his way of hopefully not needing it soon. (Cindi and I are hoping within a week). Finally they did another sonogram of his lower GI and liver this morning to try to pinpoint where this mystery bleed is coming from. Unfortunately the results aren't in yet.
Lastly, I'd like to thank my Aunt, Uncle, and cousin in Baton Rouge, Lousiana who sent in the largest donation to date for Bob's medical care. Their generosity as well as the generosity of everyone who has been donating is helping tremendously.
Keep praying for Bob...
Love and thanks,
Michele
Wednesday, July 22, 2009
The mystery continues
Family and Friends,
I want to make sure that everyone realizes that Bob is still in a medically induced coma and is on a breathing machine. I have been getting lots of emails and phone messages for Bob to call people and as much as I'd love for him to, it's just not possible. That being said, Bob's doctors are happy with the progress that he's been making with regard to his blood counts. Today he is up to 184,000 platlets, 4.8 white, and 8.6 red. He's doing so well that they've decided to keep his hospital room door opened and not make anyone wear masks in his room. (I'm still a little bit leery on this one) His oncologist did not want him to get any red blood today and I'm happy to report that there has been no bleeding in the last 10 hours. I hope this trend continues!!
Now for the not so good news, although it looks like Bob has conquered the systemic yeast infection in his bloodstream, his doctors told me that they have found the yeast colonizing in his spit (sputum) and could possibly be in his lungs. In addition his fevers are still ongoing and they think this may be a factor. Bob is not out of the woods, but he is fighting hard. We are still on a holding pattern with regard to the mystery bleed in his small intestine. After speaking with the oncologist and nurse for a lengthy period of time, it seems that in addition to the ulcers that were found initially in his stomach, he may have had some ulcers in his small intestine that could not be detected in the initial testing and were caused by overuse of anti-inflammatory medicines such as Advil and Alleve. The doctor could not stress enough what kind of damage overuse of these over-the-counter medicines can do. They believe the chemotherapy aggravated this area and are hoping that the bleeds resolve on their own. They will most likely repeat the angiography later on this week or early next.
Please continue to keep Bob in your thoughts and prayers.
Love and thanks,
Michele
I want to make sure that everyone realizes that Bob is still in a medically induced coma and is on a breathing machine. I have been getting lots of emails and phone messages for Bob to call people and as much as I'd love for him to, it's just not possible. That being said, Bob's doctors are happy with the progress that he's been making with regard to his blood counts. Today he is up to 184,000 platlets, 4.8 white, and 8.6 red. He's doing so well that they've decided to keep his hospital room door opened and not make anyone wear masks in his room. (I'm still a little bit leery on this one) His oncologist did not want him to get any red blood today and I'm happy to report that there has been no bleeding in the last 10 hours. I hope this trend continues!!
Now for the not so good news, although it looks like Bob has conquered the systemic yeast infection in his bloodstream, his doctors told me that they have found the yeast colonizing in his spit (sputum) and could possibly be in his lungs. In addition his fevers are still ongoing and they think this may be a factor. Bob is not out of the woods, but he is fighting hard. We are still on a holding pattern with regard to the mystery bleed in his small intestine. After speaking with the oncologist and nurse for a lengthy period of time, it seems that in addition to the ulcers that were found initially in his stomach, he may have had some ulcers in his small intestine that could not be detected in the initial testing and were caused by overuse of anti-inflammatory medicines such as Advil and Alleve. The doctor could not stress enough what kind of damage overuse of these over-the-counter medicines can do. They believe the chemotherapy aggravated this area and are hoping that the bleeds resolve on their own. They will most likely repeat the angiography later on this week or early next.
Please continue to keep Bob in your thoughts and prayers.
Love and thanks,
Michele
Tuesday, July 21, 2009
Still no idea where bleed is...
Family and Friends,
They did the angiography today but they couldn't find any active bleeding in Bob's small intestine. This sucks because the GI doc is absolutely convinced it's the small intestine and he only idea is to keep giving Bob blood in the hopes that it will stop. I tried to ask lots of questions to see if there is a possibility of an obstruction somewhere or that he may be bleeding in other places but the doc was pretty adamant that he wasn't. Bob was bleeding all day, his red counts went down from 8.4 to 7.9 so I can't understand why that angiography wouldn't pick up a bleed. I'm at the point now that Bob's gotten 50 pints of blood that maybe I should ask for a 2nd opinion and possibly find someone who would be willing to look other places via a CT scan or sonogram or something. I spoke with Bob's sister Cindi and she agreed, since neither one of us have a MD in gastroenterology.
Now for the super good news. Bob's white blood count is up to 4.9 which is in normal limits!! In addition his platlets jumped up to 157,000 which are within normal limits as well!! This is a big step for him. He will not be needing platlets or plasma anymore. Just packed red blood. We can theoretically go into his room without wearing gloves now, but we're not going to chance it for a few more days.... Aunt April, Uncle Tom and I will be going back to see Bob tonight and get an update. We can't go now because they are doing 4 hours of dialysis.
That's about it. Bob's bleeding is still a mystery and hopefully we'll find an answer soon!
Love and thanks,
Michele
They did the angiography today but they couldn't find any active bleeding in Bob's small intestine. This sucks because the GI doc is absolutely convinced it's the small intestine and he only idea is to keep giving Bob blood in the hopes that it will stop. I tried to ask lots of questions to see if there is a possibility of an obstruction somewhere or that he may be bleeding in other places but the doc was pretty adamant that he wasn't. Bob was bleeding all day, his red counts went down from 8.4 to 7.9 so I can't understand why that angiography wouldn't pick up a bleed. I'm at the point now that Bob's gotten 50 pints of blood that maybe I should ask for a 2nd opinion and possibly find someone who would be willing to look other places via a CT scan or sonogram or something. I spoke with Bob's sister Cindi and she agreed, since neither one of us have a MD in gastroenterology.
Now for the super good news. Bob's white blood count is up to 4.9 which is in normal limits!! In addition his platlets jumped up to 157,000 which are within normal limits as well!! This is a big step for him. He will not be needing platlets or plasma anymore. Just packed red blood. We can theoretically go into his room without wearing gloves now, but we're not going to chance it for a few more days.... Aunt April, Uncle Tom and I will be going back to see Bob tonight and get an update. We can't go now because they are doing 4 hours of dialysis.
That's about it. Bob's bleeding is still a mystery and hopefully we'll find an answer soon!
Love and thanks,
Michele
Angiography procedure today
Family and friends,
Last night we had a long night with a new nurse who was too busy to be bothered with myself, Bob's Aunt April and Uncle Tom. Without going into too much detail, we had to escalate the nurse's behavior to both the nursing supervisor as well as the ICU director. That nurse will no longer be taking care of Bob. As of 6am this morning, Bob's counts have gone up platelets to 118,000 white blood to 3.9, and red to 8.4 (not as high as it was, but better than yesterday when it was 7.9)
The bleed test from yesterday came back postive and they did determine that Bob has an active bleed in his small bowel and they believe it is limited to this area. The next step in trying to fix this is either to do surgery to remove the affected bowel, which they do not recommend because Bob is still not 100%, or do complete a less invasive angiography where a coil is inserted into his thigh and fished up into his bowel where they inject the sites with dye to determine exactly where the bleed is coming from. While they are doing this they will either try to embolize the bleed site or inject it with medicine to make it stop bleeding. The procedure should take about 30 minutes and afterward they will call me to advise of the successfulness. At that time I will speak to the GI doctor as well.
That's about it. Please pray for Bob, he's on the road to recovery. Stopping the bleed should hopefully be the last big hurdle.
Love and thanks,
Michele
Monday, July 20, 2009
Endoscopy results - Bleed in small bowel or colon
Family and Friends,
The good news is that the endoscopy went without a hitch. The bad news is they didn't find anything. The bleeding from any stomach ulcers are not enough to cause the massive amounts of blood in his stool, so they have determined that the bleeding is either coming from the small bowel or colon. Neither one is very good. The next step is that they are in the process of completing a 3 hour bleed test where they inject his blood and wait to see where it bleeds out (he had one of these last week) it's not a very specific test. Basically they'll say "yes he's bleeding and it's in the upper left quadrant (or something like that)". The next step it looks like according to the GI doc is that they will most likely have to do a angiography to determine exactly where the bleed is coming from and they may be able to cauterize at that point. Everything is up in the air right now and none of it looks super fantasic. Best case is they are able to cauterize with angiography, worst case is they have to do full on surgery and remove bowel - and they don't know if he's strong enough for that. But I'm jumping the gun. Bob is 75% of a regular person's white blood, 60% of a person's red blood, and at 50% normal on platlets.
I'm trying to be positive. But it's scary. I'd like to thank Bob's sister Cindi who is the most positive person in this whole thing. I don't know where it comes from, but man does she have strength. She's leaving to go back to Boston today and I'm going to miss her. I told her I hope I don't see her again until Bob get's out the hospital and we have a big party.
Please pray for Bob today, it's going to be a long day....
Love and Thanks,
Michele
The good news is that the endoscopy went without a hitch. The bad news is they didn't find anything. The bleeding from any stomach ulcers are not enough to cause the massive amounts of blood in his stool, so they have determined that the bleeding is either coming from the small bowel or colon. Neither one is very good. The next step is that they are in the process of completing a 3 hour bleed test where they inject his blood and wait to see where it bleeds out (he had one of these last week) it's not a very specific test. Basically they'll say "yes he's bleeding and it's in the upper left quadrant (or something like that)". The next step it looks like according to the GI doc is that they will most likely have to do a angiography to determine exactly where the bleed is coming from and they may be able to cauterize at that point. Everything is up in the air right now and none of it looks super fantasic. Best case is they are able to cauterize with angiography, worst case is they have to do full on surgery and remove bowel - and they don't know if he's strong enough for that. But I'm jumping the gun. Bob is 75% of a regular person's white blood, 60% of a person's red blood, and at 50% normal on platlets.
I'm trying to be positive. But it's scary. I'd like to thank Bob's sister Cindi who is the most positive person in this whole thing. I don't know where it comes from, but man does she have strength. She's leaving to go back to Boston today and I'm going to miss her. I told her I hope I don't see her again until Bob get's out the hospital and we have a big party.
Please pray for Bob today, it's going to be a long day....
Love and Thanks,
Michele
Endoscopy scheduled for this am
Family and friends
Its Monday morning and I got a lot of concerned emails from people yesterday wondering why I didn't update the blog. Pretty much everything stayed the same yesterday and during the day my parents invited Bobs whole family over to their new house for a cookout. We had a great time with my future in laws but were disappointed that Christopher couldn't attend.
As far as Bob is concerned, they decided to add diprovan to his cocktail of sedatives. I'm not super happy about them giving him the "Michael Jackson" drug, bit they have assured is it is safe. Unfortunately Bob has continued to bleed and more frequently, but fortunately they say that his blood counts are up high enough that they can do an endoscopy this morning. The GI doc said he's not sure if they do find something they will be able to fix it however. And that Bob could possibly have small bowel ischemia but they are still hoping it is just ulcers. For all the people that are following his blood counts, they are the following: 8.0 for red (down from 9 - this is from the bleeding), white at 3.2 and platelets up to 88,000.
I reluctantly signed the waivers for the endoscopy just now. They will be doing the procedure at 10. Then I have to go back to work. I am hoping since I had to take last week off as vacation because Bob is in the ICU, that Fannie Mae is understanding. They told me before I left they would be.
That's about it. I'm really nervous about this procedure this morning. Please say a prayer for Bob.
Love and thanks
Michele
Ps. Alot of people have been asking about where they can send cards and donations if they are not set up on Paypal. You can mail them to our home address:
5138 Aurora Lake Circle
Greenacres FL 33463
to can send it attn Bob or myself. Thanks again for all the continued donations everyone has been so generous and it is so appreciated.
-- Post From My iPhone
Its Monday morning and I got a lot of concerned emails from people yesterday wondering why I didn't update the blog. Pretty much everything stayed the same yesterday and during the day my parents invited Bobs whole family over to their new house for a cookout. We had a great time with my future in laws but were disappointed that Christopher couldn't attend.
As far as Bob is concerned, they decided to add diprovan to his cocktail of sedatives. I'm not super happy about them giving him the "Michael Jackson" drug, bit they have assured is it is safe. Unfortunately Bob has continued to bleed and more frequently, but fortunately they say that his blood counts are up high enough that they can do an endoscopy this morning. The GI doc said he's not sure if they do find something they will be able to fix it however. And that Bob could possibly have small bowel ischemia but they are still hoping it is just ulcers. For all the people that are following his blood counts, they are the following: 8.0 for red (down from 9 - this is from the bleeding), white at 3.2 and platelets up to 88,000.
I reluctantly signed the waivers for the endoscopy just now. They will be doing the procedure at 10. Then I have to go back to work. I am hoping since I had to take last week off as vacation because Bob is in the ICU, that Fannie Mae is understanding. They told me before I left they would be.
That's about it. I'm really nervous about this procedure this morning. Please say a prayer for Bob.
Love and thanks
Michele
Ps. Alot of people have been asking about where they can send cards and donations if they are not set up on Paypal. You can mail them to our home address:
5138 Aurora Lake Circle
Greenacres FL 33463
to can send it attn Bob or myself. Thanks again for all the continued donations everyone has been so generous and it is so appreciated.
-- Post From My iPhone
Saturday, July 18, 2009
Bob is bleeding again
Family and friends
I think Bobs sister Cindi said it best today: I'm bummed. During the night bob started bleeding in his poop again and lost 2 pints of blood and his white blood cells dropped by 25%. He maintains a low grade fever as well. In addition they had to increase his sedation to include diprovan and versed. I'm just sitting here with him waiting for them to start the dialysis. They will be givinghim more blood and plasma as well. I'll write more later.
Love and thanks,
Michele
-- Post From My iPhone
I think Bobs sister Cindi said it best today: I'm bummed. During the night bob started bleeding in his poop again and lost 2 pints of blood and his white blood cells dropped by 25%. He maintains a low grade fever as well. In addition they had to increase his sedation to include diprovan and versed. I'm just sitting here with him waiting for them to start the dialysis. They will be givinghim more blood and plasma as well. I'll write more later.
Love and thanks,
Michele
-- Post From My iPhone
Friday, July 17, 2009
Surgery a success
Family and friends
They successfully installed the port in Bobs neck and they are doing another round of dialysis. The nephrologist said that right now his kidneys have shut down, but since he's young they hope in a few weeks they will recover so the dialysis won't be permanent.
Bobs aunt April was sweet
enough to kidnap me since they kicked us out during dialysis and take me to lunch and a movie.
Live and thanks
Michele
Bon
-- Post From My iPhone
They successfully installed the port in Bobs neck and they are doing another round of dialysis. The nephrologist said that right now his kidneys have shut down, but since he's young they hope in a few weeks they will recover so the dialysis won't be permanent.
Bobs aunt April was sweet
enough to kidnap me since they kicked us out during dialysis and take me to lunch and a movie.
Live and thanks
Michele
Bon
-- Post From My iPhone
Bob in surgery
Family and friends
The surgeon stopped by early this morning and said that bob was cleared for surgery because he has been maintaining his blood counts. His red blood is up to 9.1 and platlets at 50000 and white blood at 1.4. The main hurdle that we are dealing with today is his kidneys. His creatine (not sure i spelled it right) is very high and for the first time yesterday his urine was brown.
They said the surgery should last 40 minutes. I'm sitting patiently in the OR waiting room with his Aunt April. Additionally I spoke to the pulmonolgist this morning to ask her about how long they think bob was going to be on the respirator. She said that would be the last thing they will worry about. He could be unconcious for possibly another 2 weeks. They will analyze him daily.
Still has a low grade fever but the swelling dlfrom the adema is going down. Please continue to keep him in your prayers.
Love and thanks,
Michele
-- Post From My iPhone
The surgeon stopped by early this morning and said that bob was cleared for surgery because he has been maintaining his blood counts. His red blood is up to 9.1 and platlets at 50000 and white blood at 1.4. The main hurdle that we are dealing with today is his kidneys. His creatine (not sure i spelled it right) is very high and for the first time yesterday his urine was brown.
They said the surgery should last 40 minutes. I'm sitting patiently in the OR waiting room with his Aunt April. Additionally I spoke to the pulmonolgist this morning to ask her about how long they think bob was going to be on the respirator. She said that would be the last thing they will worry about. He could be unconcious for possibly another 2 weeks. They will analyze him daily.
Still has a low grade fever but the swelling dlfrom the adema is going down. Please continue to keep him in your prayers.
Love and thanks,
Michele
-- Post From My iPhone
Thursday, July 16, 2009
No surgery today
Family and friends,
Sorry it's taken me so long to update this today, but I'm having a rough time for some reason. I would think spending all this time at the hospital coupled with the fact that I can't sleep probably has something to do with it. It's just catching up with me.
Anyway enough about me. Bob is hanging tough. They took 2.75 liters off him with dialysis this am, but the surgeon thought with his low platlets it would be too risky to do the surgery today. They will reassess in the morning. Bobs red blood is still decent, and the really good news is that it looks like he's kicked the blood infection. Now we just have to get his kidneys up and running, stop all the fevers, raise the platlets and plasma, and get him breathing on his own without life support. The doc says they see little improvements every day and he's headed in the right direction.
Thanks to all of bob's and my friends for the encouraging emails and comments. It's amazing how you can see peoples true colors in the face of adversity.
Keep praying for him,
Michele
-- Post From My iPhone
Sorry it's taken me so long to update this today, but I'm having a rough time for some reason. I would think spending all this time at the hospital coupled with the fact that I can't sleep probably has something to do with it. It's just catching up with me.
Anyway enough about me. Bob is hanging tough. They took 2.75 liters off him with dialysis this am, but the surgeon thought with his low platlets it would be too risky to do the surgery today. They will reassess in the morning. Bobs red blood is still decent, and the really good news is that it looks like he's kicked the blood infection. Now we just have to get his kidneys up and running, stop all the fevers, raise the platlets and plasma, and get him breathing on his own without life support. The doc says they see little improvements every day and he's headed in the right direction.
Thanks to all of bob's and my friends for the encouraging emails and comments. It's amazing how you can see peoples true colors in the face of adversity.
Keep praying for him,
Michele
-- Post From My iPhone
Wednesday, July 15, 2009
High fevers and more liters
Family and Friends,
Bob had 2 more liters of fluid taken off him through dialysis this evening (that's why I'm writing so late). Also, he's running a temperature of 103 which has got me a little worried, all they can do is pack him with ice under his armpits and give him tylenol. Tomorrow morning at 6 am they said they were going to try to do the dialysis again, and then at 10 am they are going to bring Bob to surgery to install the permanent line near his clavicle for the dialysis. Around midnight they will have the results from today's blood counts and I'll post those first thing in the morning. They did not give Bob any red blood today so it is a test to see if he lost any. I'm hoping not. That's about it, I should have lots more news tomorrow, hopefully all good.
Say a prayer for Bobby tonight,
Michele
Bob had 2 more liters of fluid taken off him through dialysis this evening (that's why I'm writing so late). Also, he's running a temperature of 103 which has got me a little worried, all they can do is pack him with ice under his armpits and give him tylenol. Tomorrow morning at 6 am they said they were going to try to do the dialysis again, and then at 10 am they are going to bring Bob to surgery to install the permanent line near his clavicle for the dialysis. Around midnight they will have the results from today's blood counts and I'll post those first thing in the morning. They did not give Bob any red blood today so it is a test to see if he lost any. I'm hoping not. That's about it, I should have lots more news tomorrow, hopefully all good.
Say a prayer for Bobby tonight,
Michele
Four liters
Family and friends,
Yesterday's dialysis was a success, in the fact that they were able to drain four liters of fluid from Bob's body. His kidney function is still down so they will have to repeat the dialysis again today. As far as his blood counts are concerned, I'm happy to report that his red blood is at 9.8 and platlets at 40,000. White blood cells also jumped from .2 to .7
Bob is still sedated and fought another fever last night. I got a little angry with the nurses because the air conditioning in Bobs room is broken and it was 78 in there. Our normal a/c is set at 68. No wonder he is so damn hot. I had the nurses put in a work order so we'll see if they can fix it today.
Thanks again to everyone for everything. All the kind words, prayers, and stories about how Bob touched people's lives means so much.
Michele
PS. Sorry I don't have a photo on my computer from Bob and the guys up in Ohio. I will look for one (in all my spare time) and try to post one soon.
-- Post From My iPhone
Yesterday's dialysis was a success, in the fact that they were able to drain four liters of fluid from Bob's body. His kidney function is still down so they will have to repeat the dialysis again today. As far as his blood counts are concerned, I'm happy to report that his red blood is at 9.8 and platlets at 40,000. White blood cells also jumped from .2 to .7
Bob is still sedated and fought another fever last night. I got a little angry with the nurses because the air conditioning in Bobs room is broken and it was 78 in there. Our normal a/c is set at 68. No wonder he is so damn hot. I had the nurses put in a work order so we'll see if they can fix it today.
Thanks again to everyone for everything. All the kind words, prayers, and stories about how Bob touched people's lives means so much.
Michele
PS. Sorry I don't have a photo on my computer from Bob and the guys up in Ohio. I will look for one (in all my spare time) and try to post one soon.
-- Post From My iPhone
Tuesday, July 14, 2009
Bob on dialysis
Family and Friends,
When I got to the hospital this morning they told me that Bob's kidneys aren't processing as much as they would like. especially because of the fact that they had started to feed him through the IV, as they feed Bob they also are growing the blood infection. Their only choice was to start dialysis. They hope that this will get his kidneys to start functioning better and relieve the adema in his hands and feet. I've never seen Bob this bloated even when he was powerlifting. The kidney doctor did not feel comfortable putting the dialysis line in Bob because they had to either stick it in his coradid artery in neck, or the one in his groin since he his blood is so thin and any little nick could be huge. They decided on using a surgeon to do it, and chose to temporarily stick the line in his groin since this is less likely to damage something. They can only put the dialysis line in for 48 hours however because the likelyhood for infection increases in that area. In 48 hours they will reassess him and if his counts go up, they will bring him into surgery and put a permanent line near his neck.
Bob is still on a breathing machine and is not concious, however he is responsive to outside stimuli, like pain, or the sound of people's voices that he knows. It's a catch 22 however, because if you do talk loud and he recognizes your voice he wakes up groggily but is scared because he has the tubes in his throat and is confused and you can see him wincing in pain and trying to shake his head to get the tubes out. Also Bob still has a high grade fever.
Special thanks to Jim Wendler Bob's powerlifting buddy, and Billy Lynch Bob's roommate in high school who have been like brother's to him, and who have comforted both me and Bob's family during the past few days. Also thanks for the rest of the donations that came in today for Bob's care. Everyone's kindness has been overwhelming.
Thanks again and keep the prayers coming,
Michele
PS. Today's pic is for the people from Bob's high school. Believe it or not, Bob's the one holding the silver championship cup.
No bleed in brain, but infection in blood
Family and Friends,
For the good news, Bob's blood counts have shot up to 8.4 and 31,000 for the hemoglobin and platlets which is good. They also did a CT scan last night to see if Bob was bleeding in his brain due to his lack of waking up timely, and the preliminary tests came back negative. Yesterday morning they took Bob off the sedation and they were waiting for him to wake up and be responsive. Bob's uncle Tommy came to visit him last night and after 12 hours he opened his eyes, and started shaking his head to try to get the tube out. Although he couldn't respond to commands like "squeeze my hand", he did respond to Uncle Tom's voice. They had to resedate him last night so they could perform the CT.
Since it wasn't a bleed in the brain that was causing Bob not to wake up for such a long period of time, they believe it was due to the fact that his kidney and liver function has gone south. I am going to speak with the kidney doctor this morning to see if they will put him on dialysis. In addition, right after they resedated him last night, he spiked a fever of 102. They were able to control it by this morning however.
The bad news is that Bob has a systemic Fungemia in his blood. This blood infection is very serious. The infectious disease doctor took samples of Bob's blood this morning to grow in a petri dish to see which antibiotics will kill the infection. Also known as an "opportunistic" infection or systemic candidiasis, it is a grave overgrowth condition where Candida penetrates into the deeper areas of the body. It occurs when candida evolves from its normal state of yeast to become a type of fungus invading the blood circulation, liver and urinary tract.Upon systemic yeast infection happening, Candida starts to invade all body parts and organs, including the digestive system, respiratory system, eyes, liver, esophagus, skin and blood. There is no single cause for systemic yeast infection, which can be provoked by different internal situations, including a compromised immune system, deficient white blood corpuscles (granulocytopenia), and the loss of benign bacteria.
Bob is far from being out of the woods, but I believe he is getting there slowly. Everyone knows he's a fighter.
Also, I'd like to thank everyone who has been donating to Bob's medical expenses. I just started to send out thank you cards. All the help is so appreciated.
Please keep the prayers coming for Bob,
Michele
For the good news, Bob's blood counts have shot up to 8.4 and 31,000 for the hemoglobin and platlets which is good. They also did a CT scan last night to see if Bob was bleeding in his brain due to his lack of waking up timely, and the preliminary tests came back negative. Yesterday morning they took Bob off the sedation and they were waiting for him to wake up and be responsive. Bob's uncle Tommy came to visit him last night and after 12 hours he opened his eyes, and started shaking his head to try to get the tube out. Although he couldn't respond to commands like "squeeze my hand", he did respond to Uncle Tom's voice. They had to resedate him last night so they could perform the CT.
Since it wasn't a bleed in the brain that was causing Bob not to wake up for such a long period of time, they believe it was due to the fact that his kidney and liver function has gone south. I am going to speak with the kidney doctor this morning to see if they will put him on dialysis. In addition, right after they resedated him last night, he spiked a fever of 102. They were able to control it by this morning however.
The bad news is that Bob has a systemic Fungemia in his blood. This blood infection is very serious. The infectious disease doctor took samples of Bob's blood this morning to grow in a petri dish to see which antibiotics will kill the infection. Also known as an "opportunistic" infection or systemic candidiasis, it is a grave overgrowth condition where Candida penetrates into the deeper areas of the body. It occurs when candida evolves from its normal state of yeast to become a type of fungus invading the blood circulation, liver and urinary tract.Upon systemic yeast infection happening, Candida starts to invade all body parts and organs, including the digestive system, respiratory system, eyes, liver, esophagus, skin and blood. There is no single cause for systemic yeast infection, which can be provoked by different internal situations, including a compromised immune system, deficient white blood corpuscles (granulocytopenia), and the loss of benign bacteria.
Bob is far from being out of the woods, but I believe he is getting there slowly. Everyone knows he's a fighter.
Also, I'd like to thank everyone who has been donating to Bob's medical expenses. I just started to send out thank you cards. All the help is so appreciated.
Please keep the prayers coming for Bob,
Michele
Monday, July 13, 2009
Not so good news and great news
Family and friends,
Bob is still on the respirator. The not so good news is that his liver and kidneys aren't doing great. They took him off the sedation this morning at 9 am as of yet, he still hasn't woken up. They are concerned, but think it may be due to his liver function. They put him on wrist restraints in the event that he wakes up and tries to pull out the tube. They said due to the fact that it's taken so long for hum to come to, that they don't want to sedate him again. They are going to do a ct scan of his brain in about an hour to make sure he isn't bleeding as a precautionary measure. There is hope. Bob has groggigly opened his eyes and grimaced when they gave him a shot. He also squeezed a hand. However they are looking for him to squeeze a hand on command which he hasn't been able to do.
Also they have been giving him red blood all day. Now he will get 2 units of platlets and they will do a blood test. The results of this test they say will be a sign of what is chances are. I'm praying they come back good.
Now for the great news, the bone marrow test came back with NO leukemia! The doc said if he can pull through this, he will make it!
Keep pulling for him,
Michele
Ps. I've got the video recorder on showing him home movies of our christmases so he can hear Christophers voice. It seems to be calming for him. I'll write later tonight to tell everyone what the blood test results are.
-- Post From My iPhone
Bob is still on the respirator. The not so good news is that his liver and kidneys aren't doing great. They took him off the sedation this morning at 9 am as of yet, he still hasn't woken up. They are concerned, but think it may be due to his liver function. They put him on wrist restraints in the event that he wakes up and tries to pull out the tube. They said due to the fact that it's taken so long for hum to come to, that they don't want to sedate him again. They are going to do a ct scan of his brain in about an hour to make sure he isn't bleeding as a precautionary measure. There is hope. Bob has groggigly opened his eyes and grimaced when they gave him a shot. He also squeezed a hand. However they are looking for him to squeeze a hand on command which he hasn't been able to do.
Also they have been giving him red blood all day. Now he will get 2 units of platlets and they will do a blood test. The results of this test they say will be a sign of what is chances are. I'm praying they come back good.
Now for the great news, the bone marrow test came back with NO leukemia! The doc said if he can pull through this, he will make it!
Keep pulling for him,
Michele
Ps. I've got the video recorder on showing him home movies of our christmases so he can hear Christophers voice. It seems to be calming for him. I'll write later tonight to tell everyone what the blood test results are.
-- Post From My iPhone
Monday morning
Family and friends,
They got Bobs fever down to 101 at about 2am and they had to immediatley give him platlets because his numbers dropped to 5000. They were able to bring that number to 22000, but now Bob has a fungal infection in his blood. They have to change his picc line because that's where they think it's coming from. They will also try to feed him through that line as well. Finally they removed 1 liter of fluid from his stomach.
I spoke to Alwyn last night and he said this: now is not the time for sadness or mourning, now's the time to get angry and fight. And fight hard.
Let's all fight for Bobby today. I know he's fighting too,
Michele
-- Post From My iPhone
They got Bobs fever down to 101 at about 2am and they had to immediatley give him platlets because his numbers dropped to 5000. They were able to bring that number to 22000, but now Bob has a fungal infection in his blood. They have to change his picc line because that's where they think it's coming from. They will also try to feed him through that line as well. Finally they removed 1 liter of fluid from his stomach.
I spoke to Alwyn last night and he said this: now is not the time for sadness or mourning, now's the time to get angry and fight. And fight hard.
Let's all fight for Bobby today. I know he's fighting too,
Michele
-- Post From My iPhone
Sunday, July 12, 2009
Turn for worse
Family and friends
This afternoon I noticed that bobs breathing was garbled. They did a chest xray buteverything looked ok. I insisted on a pulminologist. She said that bob has pnumonia and that he was retaining fluid in his esophpgus, his blood counts also dropped way back down and since he hadn't eaten in four days they would have to put in a feeding tube up his nose. They said they couldn't drain the fluid because they could tear something. When they put the feeding tube down they couldn't get it all the way and Bob started vomiting stomach acid. Some of it got into his lungs. His heartrate skyrocked, his oxygen dropped, and his breathing was labored. He was really scared and so was I. They put mask on him but it didn't help. The pulminologist decided they needed to put him on a breathing machine. Bob is unconcious now, has pnumonia, and his temperature is 103. They packed him with ice to try to lower the fever. They said it's hour by hour now. A priest came in to pray with him and then they made us leave.
I told Bob not to be afraid and that eveyone loves him.
Please say a prayer for Bobby
Michele
-- Post From My iPhone
This afternoon I noticed that bobs breathing was garbled. They did a chest xray buteverything looked ok. I insisted on a pulminologist. She said that bob has pnumonia and that he was retaining fluid in his esophpgus, his blood counts also dropped way back down and since he hadn't eaten in four days they would have to put in a feeding tube up his nose. They said they couldn't drain the fluid because they could tear something. When they put the feeding tube down they couldn't get it all the way and Bob started vomiting stomach acid. Some of it got into his lungs. His heartrate skyrocked, his oxygen dropped, and his breathing was labored. He was really scared and so was I. They put mask on him but it didn't help. The pulminologist decided they needed to put him on a breathing machine. Bob is unconcious now, has pnumonia, and his temperature is 103. They packed him with ice to try to lower the fever. They said it's hour by hour now. A priest came in to pray with him and then they made us leave.
I told Bob not to be afraid and that eveyone loves him.
Please say a prayer for Bobby
Michele
-- Post From My iPhone
Platlets better, breathing not great
Family and friends,
I spoke with the doc last night about Bob's bleed test. She said that it is not a specific test and that the endoscopy is much better. They can't do another endoscopy because the scope would tear his throat. So they are pretty sure the bleeding is coming from his stomach and bowel and most likely from the ulcers. They added a protonics drip for thestomach acid and some type coating for his stomach lining I called at six am and they told me his platlets had gone up to 47,000 which is a big improvement but red blood cells still low. Then he started breathing very garbled. I got the nurse and they did a chest xray. They think he may have fluid in his lungs due to the amount of Iv products they have given him. They stopped all iv except the blood and antibiotics. We are waiting for the results of the chest xray to see what the next step will be. They hope he will just need diuretics do drain some fluid, but not sure. He has adema as well They just put him on oxygen because he says he's having a hard time breathing and made him sit upright but good news is his o2 is steady at 99.
I'd like to give special thank you to Ed Rectenwald and all the guys at his gym in Ft. Meyers. Ed told me today they will be holding their upcoming meet for Bob and donating proceeds to his medical expenses. Thank you again.
Please keep Bob in your prayers. Thank you to everyone for all the kind words of hope and encouragement.
Michele
-- Post From My iPhone
I spoke with the doc last night about Bob's bleed test. She said that it is not a specific test and that the endoscopy is much better. They can't do another endoscopy because the scope would tear his throat. So they are pretty sure the bleeding is coming from his stomach and bowel and most likely from the ulcers. They added a protonics drip for thestomach acid and some type coating for his stomach lining I called at six am and they told me his platlets had gone up to 47,000 which is a big improvement but red blood cells still low. Then he started breathing very garbled. I got the nurse and they did a chest xray. They think he may have fluid in his lungs due to the amount of Iv products they have given him. They stopped all iv except the blood and antibiotics. We are waiting for the results of the chest xray to see what the next step will be. They hope he will just need diuretics do drain some fluid, but not sure. He has adema as well They just put him on oxygen because he says he's having a hard time breathing and made him sit upright but good news is his o2 is steady at 99.
I'd like to give special thank you to Ed Rectenwald and all the guys at his gym in Ft. Meyers. Ed told me today they will be holding their upcoming meet for Bob and donating proceeds to his medical expenses. Thank you again.
Please keep Bob in your prayers. Thank you to everyone for all the kind words of hope and encouragement.
Michele
-- Post From My iPhone
Saturday, July 11, 2009
Updated blood counts
He went down from this morning, but I'm still trying to be positive. Here are the counts:
WBC 0.3
RBC 1.56
HGB 4.5
HCT 135
PLT 11,000
You can go to this website to get an idea of where they should be:
http://www.bymyside.com/infection/understanding.jsp
Right now Bob and I are in nuclear medicine and they are doing a GI bleed test. Where they can find out where the bleed is coming from. (not that they can do anything about it). But it makes me angry. When I brought bob into the hospital 15 days ago, why didn't they do this test then, before the damn chemo?? Why wouldn't they fix the bleed before chemo started? I know hindsight is 20/20, but I would think they would have addressed this if he were at Dana Darber or something.
Also, coincidentally I ran to the store while Bob was sleeping and there it was in front if Winn Dixie: the blood mobile. Now if I didn't at least try to donate I would be a hypocrite. They said I didn't qualify for 12 mos because bob and I went to Honduras, but they did say that I could hold a blood drive in Bobs honor and any blood collected will go to him. So I am going to place a call on Monday and arrange for a drive at both my office and Bobs.
I hope Bob's counts go up and they find the source of the bleeding. Keep up the prayers for bob, he's not out of the woods yet,
Michele
-- Post From My iPhone
WBC 0.3
RBC 1.56
HGB 4.5
HCT 135
PLT 11,000
You can go to this website to get an idea of where they should be:
http://www.bymyside.com/infection/understanding.jsp
Right now Bob and I are in nuclear medicine and they are doing a GI bleed test. Where they can find out where the bleed is coming from. (not that they can do anything about it). But it makes me angry. When I brought bob into the hospital 15 days ago, why didn't they do this test then, before the damn chemo?? Why wouldn't they fix the bleed before chemo started? I know hindsight is 20/20, but I would think they would have addressed this if he were at Dana Darber or something.
Also, coincidentally I ran to the store while Bob was sleeping and there it was in front if Winn Dixie: the blood mobile. Now if I didn't at least try to donate I would be a hypocrite. They said I didn't qualify for 12 mos because bob and I went to Honduras, but they did say that I could hold a blood drive in Bobs honor and any blood collected will go to him. So I am going to place a call on Monday and arrange for a drive at both my office and Bobs.
I hope Bob's counts go up and they find the source of the bleeding. Keep up the prayers for bob, he's not out of the woods yet,
Michele
-- Post From My iPhone
Blood in perspective. Thanks Alwyn & Kim
Family and friends,
I'm going to admit I was a little disappointed this morning when the progress wasn't as much as I'd hoped. But I got a call from Bob's powerlifting friend alywn who put things in perspective. He said "you have to look at it like Bob has gained 20% since yesterday and that's fantastic". Then he told me that although the numbers seem low for an average person, they are within range for someone going through Leukemia. Kim also said the same. Both Kim and Alwyn have both gone through this themselves so their perspective is invaluable. I definately needed to hear it.
As far as the blood donations are concerned, I don't think you can specifically donate in Bob's name, but you are paying it forward. If you want, you can donate and send him a card to let him know you did it in his name. Our address is:
5138 Aurora Lake Circle
Greenacres, Fl 33463
Thanks again to everyone for evrything.
Michele
Ps. I spoke to the doc. She's great. She said she's fighting for him tooth and nail. She's willing to give him an unlimited supply of blood products as long as he can take it. ( I also put up a big thank you sign in the room with an 8x10 photo of Bob and Chris to humanize Bob to the nurses and have them go the extra mile. I think it's working). Also they fixed his picc line do the blood is coming into him faster so he can get more which they are very happy about.
-- Post From My iPhone
I'm going to admit I was a little disappointed this morning when the progress wasn't as much as I'd hoped. But I got a call from Bob's powerlifting friend alywn who put things in perspective. He said "you have to look at it like Bob has gained 20% since yesterday and that's fantastic". Then he told me that although the numbers seem low for an average person, they are within range for someone going through Leukemia. Kim also said the same. Both Kim and Alwyn have both gone through this themselves so their perspective is invaluable. I definately needed to hear it.
As far as the blood donations are concerned, I don't think you can specifically donate in Bob's name, but you are paying it forward. If you want, you can donate and send him a card to let him know you did it in his name. Our address is:
5138 Aurora Lake Circle
Greenacres, Fl 33463
Thanks again to everyone for evrything.
Michele
Ps. I spoke to the doc. She's great. She said she's fighting for him tooth and nail. She's willing to give him an unlimited supply of blood products as long as he can take it. ( I also put up a big thank you sign in the room with an 8x10 photo of Bob and Chris to humanize Bob to the nurses and have them go the extra mile. I think it's working). Also they fixed his picc line do the blood is coming into him faster so he can get more which they are very happy about.
-- Post From My iPhone
A lot of blood, a little bit of progress
Family and Friends,
Yesterday they gave Bob blood, platelets, and plasma to try to increase his counts. They did go up a little bit, but not as much as they had hoped. His blood is at 5.4 and platlets at 12,000. I spoke with the nurse this morning at around 6am and he said they are going to be taking Bob for another CT Scan of his chest and stomach. It's 8:30 right now and the doctor is coming soon. I am going to speak with her regarding his nutrition as they wouldn't give him anything to eat yesterday at all, and he couldn't drink water until about 2 pm, (they had originally said yesterday if his counts were up where they wanted them they would give Bob nutrients in the IV, but held off because they didn't want to tear up his stomach or intestines any more than it already was) and I will also get on my little soapbox and speak to his doctor regarding the importance of continuing to give Bob more blood products until he gets to the point of being able to maintain them at normal levels. My fear is that possibly the doctor will give up on Bob and stop giving him blood. Since 2 weeks ago, Bob has received blood from 30 PEOPLE.
I would like to thank the 30 strangers that out of the kindness of their hearts volunteered to donate blood and helped save Bob's life. Bob will probably need the help of 30 more people, if not more. When I was in high school and college I always donated blood whenever I saw a bloodmobile, but in the 12 years since I graduated college, I've always made excuses not to. Not anymore. Every time the bloodmobile stops by my office, or I see it at the movie theater or mall or where ever, I'm going to donate and hopefully help save someone's life too.
Keep the prayers and thoughts coming for Bob, he's still got a long road ahead.
Michele
Yesterday they gave Bob blood, platelets, and plasma to try to increase his counts. They did go up a little bit, but not as much as they had hoped. His blood is at 5.4 and platlets at 12,000. I spoke with the nurse this morning at around 6am and he said they are going to be taking Bob for another CT Scan of his chest and stomach. It's 8:30 right now and the doctor is coming soon. I am going to speak with her regarding his nutrition as they wouldn't give him anything to eat yesterday at all, and he couldn't drink water until about 2 pm, (they had originally said yesterday if his counts were up where they wanted them they would give Bob nutrients in the IV, but held off because they didn't want to tear up his stomach or intestines any more than it already was) and I will also get on my little soapbox and speak to his doctor regarding the importance of continuing to give Bob more blood products until he gets to the point of being able to maintain them at normal levels. My fear is that possibly the doctor will give up on Bob and stop giving him blood. Since 2 weeks ago, Bob has received blood from 30 PEOPLE.
I would like to thank the 30 strangers that out of the kindness of their hearts volunteered to donate blood and helped save Bob's life. Bob will probably need the help of 30 more people, if not more. When I was in high school and college I always donated blood whenever I saw a bloodmobile, but in the 12 years since I graduated college, I've always made excuses not to. Not anymore. Every time the bloodmobile stops by my office, or I see it at the movie theater or mall or where ever, I'm going to donate and hopefully help save someone's life too.
Keep the prayers and thoughts coming for Bob, he's still got a long road ahead.
Michele
Friday, July 10, 2009
Blood levels
To give everyone an idea, normal platlet levels are 150,000. Bob's are at 10,000. Your red bood cells/hemoglobin are supposed to be between 13-15 or something. Bob is at 4. He's fighting like hell though. Keep praying, Michele
-- Post From My iPhone
-- Post From My iPhone
Fight of Bob's life
Family and friends,
It's 3pm, they've given Bob 2 pints of plasma, one bag of red blood, and he's got 3 bags of red blood to go. The doctor thinks it's the chemo which eradiated his intestinal lining, colon, or reopened the ulcers in his stomach. They said all they can do now is hope and pray that the blood takes and he doesn't bleed out. Today Bob is fighting for his life.
Please pray for him with all you got.
-- Post From My iPhone
It's 3pm, they've given Bob 2 pints of plasma, one bag of red blood, and he's got 3 bags of red blood to go. The doctor thinks it's the chemo which eradiated his intestinal lining, colon, or reopened the ulcers in his stomach. They said all they can do now is hope and pray that the blood takes and he doesn't bleed out. Today Bob is fighting for his life.
Please pray for him with all you got.
-- Post From My iPhone
Bob in ICU
Family and Friends,
Bob was moved to the ICU and not doing very well. They believe his bleeding is caused from the chemotherapy which wears away the lining of your intestines and colon. We are waiting for the GI doctor to confirm where the bleeding is coming from. Please pray for him.
Michele
Bob was moved to the ICU and not doing very well. They believe his bleeding is caused from the chemotherapy which wears away the lining of your intestines and colon. We are waiting for the GI doctor to confirm where the bleeding is coming from. Please pray for him.
Michele
4am and possible transfer to ICU
Family and Friends,
It's 4am right now and Bob hasn't stopped bleeding. His blood counts are very low and so is his blood pressure. They are just running the final labs on his blood now, but it looks like they may be transferring him back to the Intensive Care Unit due to the extensive amount of blood loss. I will keep everyone posted as we learn more.
I forgot to tell everyone that Christopher came by last night to see his dad. I was so glad that he came because you could see the happiness on Bob's face. I took a picture of him standing in front of the get well card he made.
Please say a prayer for Bob today, Michele
Thursday, July 9, 2009
Internal Bleeding
Family and Friends,
Bob isn't doing well tonight. He is pooping straight blood so they are monitoring him very carefully for internal bleeding. He is incoherant, going in and out of conciousness, and very weak and shaky as well. Tonight by far as been the worst night. I've been very upset and it was the first time I lost it in front of him, I was just scared because he's never done that much bleeding.
They are going to hold off on the pain meds for a few hours to see if that will help him come around. They are also giving him emergency platlets to help him stop bleeding. I am going to sleep at the hospital tonight and take the day off tomorrow so that I can speak with his oncologist directly and possibly get his GI doctor in here too. They are going to be taking stool samples and drawing blood throughout the night to test him. Please keep him in your prayers tonight.
Michele
Bob isn't doing well tonight. He is pooping straight blood so they are monitoring him very carefully for internal bleeding. He is incoherant, going in and out of conciousness, and very weak and shaky as well. Tonight by far as been the worst night. I've been very upset and it was the first time I lost it in front of him, I was just scared because he's never done that much bleeding.
They are going to hold off on the pain meds for a few hours to see if that will help him come around. They are also giving him emergency platlets to help him stop bleeding. I am going to sleep at the hospital tonight and take the day off tomorrow so that I can speak with his oncologist directly and possibly get his GI doctor in here too. They are going to be taking stool samples and drawing blood throughout the night to test him. Please keep him in your prayers tonight.
Michele
Wednesday, July 8, 2009
Bone Marrow Aspiration
Family and Friends,
First the good news, the nephrologist said that after doubling the amount of IV fluids Bob was getting his kidney and liver counts were better today. If this trend continues then he will not need dialysis. Bob also got his bone marrow testing today. I had to watch it and it was horrible. Imagine sticking a 5 inch screwdriver into your back and scraping out a piece of bone or something like that. They won't have the results of the bone marrow test for about a week. This will tell us if the chemotherapy worked.
Bob was pretty much out of it the whole day, very disoriented and not making a lot of sense. I watched him sleep, just to make sure everything was okay since he hasn't been acting like this before. He has also come down with wicked hiccups to the point that it sounds like he's choking, and the doctor prescribed him muscle relaxers for it. He also needed 2 more pints of blood and a unit of platlets. Finally, they weighed Bob today. when Bob was diagnosed with Leukemia 14 days ago he weighed 251. Now 2 weeks later he's lost 43 pounds and is at 208.
Thanks to everyone for keeping the comments and prayers coming for Bob,
Michele
First the good news, the nephrologist said that after doubling the amount of IV fluids Bob was getting his kidney and liver counts were better today. If this trend continues then he will not need dialysis. Bob also got his bone marrow testing today. I had to watch it and it was horrible. Imagine sticking a 5 inch screwdriver into your back and scraping out a piece of bone or something like that. They won't have the results of the bone marrow test for about a week. This will tell us if the chemotherapy worked.
Bob was pretty much out of it the whole day, very disoriented and not making a lot of sense. I watched him sleep, just to make sure everything was okay since he hasn't been acting like this before. He has also come down with wicked hiccups to the point that it sounds like he's choking, and the doctor prescribed him muscle relaxers for it. He also needed 2 more pints of blood and a unit of platlets. Finally, they weighed Bob today. when Bob was diagnosed with Leukemia 14 days ago he weighed 251. Now 2 weeks later he's lost 43 pounds and is at 208.
Thanks to everyone for keeping the comments and prayers coming for Bob,
Michele
Tuesday, July 7, 2009
Kidney and Liver Issues
Family and Friends,
I spoke with Bob's Oncologist today and they are having concerns about Bob's kidney and liver functions. She brought in a Nephrologist who specializes in kidney issues and he said that Bob's kidneys are malfunctioning due to the dehydration caused by all the diarrhea. They decided to increase his IV fluid rate over the next 24 hours, but if his kidney function does not improve there is a possibility he will need a course of dialysis. As I said in the last blog, his Bilirubin levels are elevated which affect his liver. If this does not improve they will do an MRI to determine the next course of action. He needed another platelet transfusion today as well.
I am taking a half day of work tomorrow so that I can be here when the doctor performs the bone marrow aspiration in the afternoon. This will determine if the chemo worked. Bob is very weak today, but did a great job on drinking the ensures. The doctor spoke to him about his food intake and the dietitian came by and they have added an apple juice supplement called Enlive which has 9 grams of protein. He'll be drinking 4 of these a day in addition to the 4 ensure.
Please keep your fingers crossed for tomorrow. Thanks again for keeping Bob in your thoughts and prayers,
Michele
I spoke with Bob's Oncologist today and they are having concerns about Bob's kidney and liver functions. She brought in a Nephrologist who specializes in kidney issues and he said that Bob's kidneys are malfunctioning due to the dehydration caused by all the diarrhea. They decided to increase his IV fluid rate over the next 24 hours, but if his kidney function does not improve there is a possibility he will need a course of dialysis. As I said in the last blog, his Bilirubin levels are elevated which affect his liver. If this does not improve they will do an MRI to determine the next course of action. He needed another platelet transfusion today as well.
I am taking a half day of work tomorrow so that I can be here when the doctor performs the bone marrow aspiration in the afternoon. This will determine if the chemo worked. Bob is very weak today, but did a great job on drinking the ensures. The doctor spoke to him about his food intake and the dietitian came by and they have added an apple juice supplement called Enlive which has 9 grams of protein. He'll be drinking 4 of these a day in addition to the 4 ensure.
Please keep your fingers crossed for tomorrow. Thanks again for keeping Bob in your thoughts and prayers,
Michele
Didn't get a chance to write last night....
Family and Friends,
Had a sort of rough evening, Bob didn't need any blood or platelets again, but they did do a liver ultrasound. Although it came back okay, they are keeping a close eye on his liver and kidney functions because his blood count is so low. (And his eyes are still yellow) I asked the doctor about trying to feed him with a tube, but she said there would be too many complications, so it's imperative that Bob eats as much as possible. The diarrhea has been an ongoing issue as well. He had more Ensures, a vanilla shake from BK and he actually ate breakfast yesterday. So I think he's moving in the right direction. He had an issue with his pic line in the fact that they can no longer draw blood from it for testing. They are having to draw blood by sticking him again and he's getting bruises all over his arms. Lastly I emailed over to Dana Farber again to the head of adult Leukemia to talk to him about both Bob and his mom having Leukemia and how rare that is genetically. I am waiting for a response. That's about it. Please keep the emails and comments coming, I read them to Bob daily. He gets the bone marrow test on Wednesday so keep your fingers crossed. This test will tell us how successful the chemo was at eradicating the cancer cells.
Michele
Had a sort of rough evening, Bob didn't need any blood or platelets again, but they did do a liver ultrasound. Although it came back okay, they are keeping a close eye on his liver and kidney functions because his blood count is so low. (And his eyes are still yellow) I asked the doctor about trying to feed him with a tube, but she said there would be too many complications, so it's imperative that Bob eats as much as possible. The diarrhea has been an ongoing issue as well. He had more Ensures, a vanilla shake from BK and he actually ate breakfast yesterday. So I think he's moving in the right direction. He had an issue with his pic line in the fact that they can no longer draw blood from it for testing. They are having to draw blood by sticking him again and he's getting bruises all over his arms. Lastly I emailed over to Dana Farber again to the head of adult Leukemia to talk to him about both Bob and his mom having Leukemia and how rare that is genetically. I am waiting for a response. That's about it. Please keep the emails and comments coming, I read them to Bob daily. He gets the bone marrow test on Wednesday so keep your fingers crossed. This test will tell us how successful the chemo was at eradicating the cancer cells.
Michele
Sunday, July 5, 2009
11 days since start of chemo
Family and Friends,
The good news today is that Bob didn't need any platlets or blood transfusions. In addition, he has been drinking gatorade most of the day and even had a milkshake. However I am a concerned that he is a little jaundice as his eyes are yellow. I addressed it with the doctor this morning and they are going to give him a liver ultrasound sometime tonight because his bilirubin levels are above normal.
Also, we finally got the webcam up and working so Bob could see his son Christopher. Bob wanted me to tell everyone that he was tired, weak, but he was pushing forward.
Thanks for the prayers and well wishes,
Michele
PS. Since I know everyone wants to come and see Bob, we could kill 2 birds with one stone and have a big welcome home/engagement party once Bob gets out of here. I'll let everyone know more later.
The good news today is that Bob didn't need any platlets or blood transfusions. In addition, he has been drinking gatorade most of the day and even had a milkshake. However I am a concerned that he is a little jaundice as his eyes are yellow. I addressed it with the doctor this morning and they are going to give him a liver ultrasound sometime tonight because his bilirubin levels are above normal.
Also, we finally got the webcam up and working so Bob could see his son Christopher. Bob wanted me to tell everyone that he was tired, weak, but he was pushing forward.
Thanks for the prayers and well wishes,
Michele
PS. Since I know everyone wants to come and see Bob, we could kill 2 birds with one stone and have a big welcome home/engagement party once Bob gets out of here. I'll let everyone know more later.
Saturday, July 4, 2009
Happy 4th of July
Family and Friends,
Bob is slowly getting his appetite back. He is drinking powerade, Ensure, and eating cookies. At least it's a start. He's still in a lot of pain, but the diarrhea and fevers are beginning to subside. However, he still requires infusions of blood and plasma daily. If I had to guess, I'd say Bob is weighing about 215.
Thanks to my family and the DiPalermos who had me over to briefly celebrate the 4th. And a super special thanks to Bob's friend Ron who is getting gift certificates for rounds of golf in south Florida that he is going to auction off in order to raise money for Bob's medical expenses. If anyone out there is a golfer, let me know and I'll put you in touch with Ron.
Happy 4th of July everyone!
Michele
Bob is slowly getting his appetite back. He is drinking powerade, Ensure, and eating cookies. At least it's a start. He's still in a lot of pain, but the diarrhea and fevers are beginning to subside. However, he still requires infusions of blood and plasma daily. If I had to guess, I'd say Bob is weighing about 215.
Thanks to my family and the DiPalermos who had me over to briefly celebrate the 4th. And a super special thanks to Bob's friend Ron who is getting gift certificates for rounds of golf in south Florida that he is going to auction off in order to raise money for Bob's medical expenses. If anyone out there is a golfer, let me know and I'll put you in touch with Ron.
Happy 4th of July everyone!
Michele
Thursday, July 2, 2009
More fevers, more blood, and pretty good news
Family and Friends,
I'm going to start with the pretty good news first. FINALLY the thorough lab analysis came back for Bob's bone marrow. Here's the scoop: Bob has Acute Myeloid Leukemia in subgroup M4 with an inversion of the M16 chromosome. Per the lab results, it says "this is associated with a better prognosis than most other AML subtypes". So that's my good news.
The bad news is that Bob still isn't eating. I guilted him into drinking an Ensure, but that's about it. The only good thing is that he's drinking a ton of water. He has a fever again, which he's had on and off for the majority of the day, and they are doing the ice thing again. In addition, they've given him more blood, more platlets, and now more blood again. They're also adding in potassium, dilaudid, ms contin, zofran, tylenol, and protonics for good measure.
I'm spending another night sleeping in Bob's room with him. They have a pull out bed and I'm sleeping with a surgical mask on. It's definately something you have to get used to.
It's a blessing that I've got tomorrow off so that I can spend time with Bob.
Thanks again to everyone for the prayers and kind thoughts,
Michele
I'm going to start with the pretty good news first. FINALLY the thorough lab analysis came back for Bob's bone marrow. Here's the scoop: Bob has Acute Myeloid Leukemia in subgroup M4 with an inversion of the M16 chromosome. Per the lab results, it says "this is associated with a better prognosis than most other AML subtypes". So that's my good news.
The bad news is that Bob still isn't eating. I guilted him into drinking an Ensure, but that's about it. The only good thing is that he's drinking a ton of water. He has a fever again, which he's had on and off for the majority of the day, and they are doing the ice thing again. In addition, they've given him more blood, more platlets, and now more blood again. They're also adding in potassium, dilaudid, ms contin, zofran, tylenol, and protonics for good measure.
I'm spending another night sleeping in Bob's room with him. They have a pull out bed and I'm sleeping with a surgical mask on. It's definately something you have to get used to.
It's a blessing that I've got tomorrow off so that I can spend time with Bob.
Thanks again to everyone for the prayers and kind thoughts,
Michele
Wednesday, July 1, 2009
Last Night of Chemo Treatment
Family and Friends,
Tonight is Bob's last bag of Chemo. He's had a really rough day, last night he had a fever of 103 and they packed him with ice, and it pretty much stayed the same throughout the night. His fever went down this morning to 101. The doctor told me they thought he might have an infection due to the effects of the chemo and his low blood counts, so they gave him broad spectrum antibiotics as well as a platelet transfusion today. This afternoon his fever went back up to 103 and they had to pack him with ice again. He hasn't left the bed and hasn't been able to eat since a day and a half ago. The nutritionist is giving him Ensure, but he's not keen on drinking it due to the nausea.
A special thanks to the people who are following Bob from Alwyn's blog. That's very kind of you. In addition, a super huge thank you to everyone for all the congratulations about the engagement last night!! I have recent photos of Bob and I from our trip 10 days ago, and when I get home, I'll try to post some. It's pretty crazy what a difference 1o days makes.
Michele
Tonight is Bob's last bag of Chemo. He's had a really rough day, last night he had a fever of 103 and they packed him with ice, and it pretty much stayed the same throughout the night. His fever went down this morning to 101. The doctor told me they thought he might have an infection due to the effects of the chemo and his low blood counts, so they gave him broad spectrum antibiotics as well as a platelet transfusion today. This afternoon his fever went back up to 103 and they had to pack him with ice again. He hasn't left the bed and hasn't been able to eat since a day and a half ago. The nutritionist is giving him Ensure, but he's not keen on drinking it due to the nausea.
A special thanks to the people who are following Bob from Alwyn's blog. That's very kind of you. In addition, a super huge thank you to everyone for all the congratulations about the engagement last night!! I have recent photos of Bob and I from our trip 10 days ago, and when I get home, I'll try to post some. It's pretty crazy what a difference 1o days makes.
Michele
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