9/12: Emergency Surgery and Lots of Frustration
The ball started rolling Saturday, during Leo's visit with Dr. Kroin. She was concerned about Leo's ulcerated sore near the port site and suggested we speak to the surgeon who implanted the port. For the thrush, as Dr. Kroin suggested, we started giving Leo diflucan in hopes of speeding-up removal of this fungus.
Sometime Sunday, the scab on that sore fell off and left things looking bad. To complicate matters, either Leo got a sore throat or the thrush in his throat made drinking almost impossible. So when the antineoplastons started pumping and he got thirsty, instead of the liquids going down his throat they were coming out his nose. Not a good situation for him, so we turned-off the pump. I paged the on-call doctor from the Burzynski Clinic and spoke to Dr. Kubove to see what we should do. She agreed that we did the right thing by stopping the pump and that we may have to wait a day or two until the thrush or sore throat improved. So even though Leo still woke-up a few times that night, we got much better sleep than in the past 2 months.
Monday morning I called pediatric surgery at Children's Memorial and made an appointment for 1pm with Dr. Luck and all her name implies. Dr. Reynolds, who did the original surgery and is now the Head of Pediatric Surgery at Children's, was off. We finally saw Dr. Luck at almost 2pm, after nurse Teri's brief visit. The doctor did not give us good news: the port had to go immediately. The only bright spot was that during the surgery to remove the port they could install a catheter -- identical function, different mechanics. She also said Leo would have to go on antibiotics based on how the site looked. How long? Don't know. How long would it take this wound to heal? Don't know. When would he be able to start back on the treatment? Don't know. How long would his hospital stay be? Don't know. Since her office hours end at 4pm, surgery would be afterwards. When, exactly? Don't know, but we took Leo to pre-op anyway -- there was no choice.
We were visited by nurses; by 2 anesthesiologists (a resident and the real one); and by the surgical resident, Dr. Colleen Jay. She spoke very quickly, tried to skirt around issues, and wasn't used to people (me) telling her to slow down, repeat things, and asking questions. Since that seemed to annoy her, I did it even more... For example, how exactly would we use the catheter? Did its tip have the same size and connection style of the current Huber Needle/Clave connector? She didn't know and said we should ask the anesthesiologists, since they administer all sorts of medicines during surgery, sometimes through these catheters. They had no clue and suggested we ask the pre-op nurses, since we were standing at their station. None of them knew, but suggested asking Dr. Luck, since she does these surgeries all the time. Dr. Luck happened to be walking in our direction. Guess what? She didn't know either. Stated another way, to us it is unacceptable when the people planning on doing surgery on our child answer the connection question by using phrases like "it should" and "probably the same." I don't care how many years of schooling or what G-d like complex they have. Their answers need to be exact and accurate. We finally got a straight answer after we showed the current clave connector, took out a saline-filled syringe, and showed Drs. Luck and Jay how we currently do it (without actually doing anything). Finally we were told the connections are identical and Leo was taken to surgery at about 6:35pm.
The next 2+ hours brought indescribable tension even though we were told the surgery would take at least 1 hour. At 9:02pm, just as the security guard in the surgical waiting room was leaving, we asked if he would call post-op to see what was going on. He handed me the phone and I was told Leo was out of surgery, everything was fine, and Dr. Luck would be coming shortly. At just past 9:30 I called post-op myself and they told me that Leo had only been brought there a few minutes before, was just waking-up (I heard him in the background), and Dr. Luck would be coming shortly. Sounds familiar. Dr. Luck did show-up a few minutes later and took us to see him.
A Broviac Catheter was implaneted on Leo's right chest this time, since the now-removed port was on the left. They also had to cut-away some of the dead tissue from the site where the ulcerated sore/abscess was and culture it. The result was described to us as a serious wound that would take some time to heal, which was going to be slow because of the decadron. How long? Don't know. Leo was also placed on clindamycin, a very strong and broad antibiotic since, again, the port area looked infected and until an antibiotic specific to that infection was determined, clindamycin was it. We were also told that Leo's hemoglobin was low and a transfusion would be need if it got any lower. Then Dr. Luck left and we escorted Leo to room 480 bed 1 in the hemotology/oncology unit. I went home to be with Anna and Nina while Marina stayed with Leo.
Tuesday morning Marina called and said that a transfusion was done during the night. Leo's hemoglobin got below 8 and, again, there was no choice. Of course his hemoglobin jumped to 13 afterwards, which is good. The rest of Tuesday would be nothing short of frustration and borderline anger.
All the Grandparents, Marina, and I were in the hospital most of the day. Several things were supposed to happen:
First, regarding Dr. Luck's visit, we were told various things throughout the day. These included: it was her day off; she was in surgery all day; she wasn't in the hospital at all; etc. Instead, in the morning Dr. Jay, the surgical resident present during the operation, came. She came early in the morning to follow-up on the transfusion. She also came later in the morning and I spoke with her to get details of the lab tests, antibiotics, etc. She was the one that promised Marina to order the physical therapist consultation that never materialized. Instead, a Dr. Fawaz something or other came. He was a nice guy, but seemed to be a lamb sent to the slaughter.
He came early in the afternoon seeking consent for a second surgery to be done Wednesday to further debreve the wound (i.e. remove more necrotic/dead tissue that would slow/prevent healing). We were beside our selves. No one even looked at the wound, but they were already suggesting another surgery, which he claimed was sometimes necessary! I refused to sign the consent until Dr. Luck, herself, saw us, not called as he said she would. He said she was in surgery until about 3:30, but promised that she would stop by between 4-6pm.
Starting at about 3pm we started asking our nurses to page the on-call surgeon. No one returned any pages. At 4:50 I went to the pediatric surgery department and mentioned my frustration to the 2 women in the reception area. They also paged the on-call surgeon, who didn't return their pages either. Then nurse Teri came out and I told her what was going. She said she'd find someone to help. At almost 5:30 she came out and said it was useless for me to wait in their reception area. I should go back to Leo's room and wait for someone to call us. She refused my offer of betting money that anyone would show-up, which led to my diatribe about how I would lose my job if I acted the way they did. I returned to the room and found-out that Dr. Luck called and said they would only be doing a dressing change. It needed to be done under anesthesia because it was going to be painful. A few minutes later, the same Dr. Fawaz something or other returned with the proper consent, which I signed of course. But he couldn't tell us when this would happen, only that the anesthesiologists schedule each day's surgeries. I found Debbie McKenna, the nursing manager, and solicited her help on scheduling Leo as early in the day as possible because the decadron makes him ravenous, but he can't eat 8 hours before anesthesia.
Second, regarding the hemotologist, this didn't exactly happen either. Instead, sometime in the afternoon nurse Stephanie and Dr. Bhatt came. Stephanie is the same nurse that works for Dr. Goldman in his chemo clinic. She is very nice and remembered us. They just wanted to talk to us and get some information, although we never asked for anyone from oncology. Stephanie said she's met Dr. Burzynski and heard of antineoplastons, but nothing detailed. Shockingly, Dr. Bhatt, a fellow, claimed to have never heard of him or antineoplastons! I asked if she had ever heard of Avastin, the only FDA-approved drug for cancer. She said no and that her training had only been in "traditional" therapies. Anyway, they asked for the specific names of the antineoplastons, not just A10 and AS2-1. I offered Dr. Szymkowski's number and, surprisingly, Dr. Bhatt called and got the names (antineoplaston A10 is phenylacetylglutamine and phenylacetylisoglutamine and AS2-1 is phenylacetylglutamine and phenylacetic acid) and some general information. I doubt this will be useful to her or her patients, G-d help them.
Finally, Dr. Luck did start the process of transferring Leo's "care" to the hemotology department, instead of surgery. We're praying tomorrow brings some of the luck that has been alluding us...
Sometime Sunday, the scab on that sore fell off and left things looking bad. To complicate matters, either Leo got a sore throat or the thrush in his throat made drinking almost impossible. So when the antineoplastons started pumping and he got thirsty, instead of the liquids going down his throat they were coming out his nose. Not a good situation for him, so we turned-off the pump. I paged the on-call doctor from the Burzynski Clinic and spoke to Dr. Kubove to see what we should do. She agreed that we did the right thing by stopping the pump and that we may have to wait a day or two until the thrush or sore throat improved. So even though Leo still woke-up a few times that night, we got much better sleep than in the past 2 months.
Monday morning I called pediatric surgery at Children's Memorial and made an appointment for 1pm with Dr. Luck and all her name implies. Dr. Reynolds, who did the original surgery and is now the Head of Pediatric Surgery at Children's, was off. We finally saw Dr. Luck at almost 2pm, after nurse Teri's brief visit. The doctor did not give us good news: the port had to go immediately. The only bright spot was that during the surgery to remove the port they could install a catheter -- identical function, different mechanics. She also said Leo would have to go on antibiotics based on how the site looked. How long? Don't know. How long would it take this wound to heal? Don't know. When would he be able to start back on the treatment? Don't know. How long would his hospital stay be? Don't know. Since her office hours end at 4pm, surgery would be afterwards. When, exactly? Don't know, but we took Leo to pre-op anyway -- there was no choice.
We were visited by nurses; by 2 anesthesiologists (a resident and the real one); and by the surgical resident, Dr. Colleen Jay. She spoke very quickly, tried to skirt around issues, and wasn't used to people (me) telling her to slow down, repeat things, and asking questions. Since that seemed to annoy her, I did it even more... For example, how exactly would we use the catheter? Did its tip have the same size and connection style of the current Huber Needle/Clave connector? She didn't know and said we should ask the anesthesiologists, since they administer all sorts of medicines during surgery, sometimes through these catheters. They had no clue and suggested we ask the pre-op nurses, since we were standing at their station. None of them knew, but suggested asking Dr. Luck, since she does these surgeries all the time. Dr. Luck happened to be walking in our direction. Guess what? She didn't know either. Stated another way, to us it is unacceptable when the people planning on doing surgery on our child answer the connection question by using phrases like "it should" and "probably the same." I don't care how many years of schooling or what G-d like complex they have. Their answers need to be exact and accurate. We finally got a straight answer after we showed the current clave connector, took out a saline-filled syringe, and showed Drs. Luck and Jay how we currently do it (without actually doing anything). Finally we were told the connections are identical and Leo was taken to surgery at about 6:35pm.
The next 2+ hours brought indescribable tension even though we were told the surgery would take at least 1 hour. At 9:02pm, just as the security guard in the surgical waiting room was leaving, we asked if he would call post-op to see what was going on. He handed me the phone and I was told Leo was out of surgery, everything was fine, and Dr. Luck would be coming shortly. At just past 9:30 I called post-op myself and they told me that Leo had only been brought there a few minutes before, was just waking-up (I heard him in the background), and Dr. Luck would be coming shortly. Sounds familiar. Dr. Luck did show-up a few minutes later and took us to see him.
A Broviac Catheter was implaneted on Leo's right chest this time, since the now-removed port was on the left. They also had to cut-away some of the dead tissue from the site where the ulcerated sore/abscess was and culture it. The result was described to us as a serious wound that would take some time to heal, which was going to be slow because of the decadron. How long? Don't know. Leo was also placed on clindamycin, a very strong and broad antibiotic since, again, the port area looked infected and until an antibiotic specific to that infection was determined, clindamycin was it. We were also told that Leo's hemoglobin was low and a transfusion would be need if it got any lower. Then Dr. Luck left and we escorted Leo to room 480 bed 1 in the hemotology/oncology unit. I went home to be with Anna and Nina while Marina stayed with Leo.
Tuesday morning Marina called and said that a transfusion was done during the night. Leo's hemoglobin got below 8 and, again, there was no choice. Of course his hemoglobin jumped to 13 afterwards, which is good. The rest of Tuesday would be nothing short of frustration and borderline anger.
All the Grandparents, Marina, and I were in the hospital most of the day. Several things were supposed to happen:
- A visit from Dr. Luck to look at the wound and tell us how to take care of it.
- Since we knew Leo wasn't leaving so soon, we asked for a physical therapy consultation.
- To try to get Leo back on antineoplastons and to prevent a future transfusion, a consultation with a hemotologist about the possible use of procrit to improve Leo's red blood counts/hemoglobin, if okayed by Houston.
First, regarding Dr. Luck's visit, we were told various things throughout the day. These included: it was her day off; she was in surgery all day; she wasn't in the hospital at all; etc. Instead, in the morning Dr. Jay, the surgical resident present during the operation, came. She came early in the morning to follow-up on the transfusion. She also came later in the morning and I spoke with her to get details of the lab tests, antibiotics, etc. She was the one that promised Marina to order the physical therapist consultation that never materialized. Instead, a Dr. Fawaz something or other came. He was a nice guy, but seemed to be a lamb sent to the slaughter.
He came early in the afternoon seeking consent for a second surgery to be done Wednesday to further debreve the wound (i.e. remove more necrotic/dead tissue that would slow/prevent healing). We were beside our selves. No one even looked at the wound, but they were already suggesting another surgery, which he claimed was sometimes necessary! I refused to sign the consent until Dr. Luck, herself, saw us, not called as he said she would. He said she was in surgery until about 3:30, but promised that she would stop by between 4-6pm.
Starting at about 3pm we started asking our nurses to page the on-call surgeon. No one returned any pages. At 4:50 I went to the pediatric surgery department and mentioned my frustration to the 2 women in the reception area. They also paged the on-call surgeon, who didn't return their pages either. Then nurse Teri came out and I told her what was going. She said she'd find someone to help. At almost 5:30 she came out and said it was useless for me to wait in their reception area. I should go back to Leo's room and wait for someone to call us. She refused my offer of betting money that anyone would show-up, which led to my diatribe about how I would lose my job if I acted the way they did. I returned to the room and found-out that Dr. Luck called and said they would only be doing a dressing change. It needed to be done under anesthesia because it was going to be painful. A few minutes later, the same Dr. Fawaz something or other returned with the proper consent, which I signed of course. But he couldn't tell us when this would happen, only that the anesthesiologists schedule each day's surgeries. I found Debbie McKenna, the nursing manager, and solicited her help on scheduling Leo as early in the day as possible because the decadron makes him ravenous, but he can't eat 8 hours before anesthesia.
Second, regarding the hemotologist, this didn't exactly happen either. Instead, sometime in the afternoon nurse Stephanie and Dr. Bhatt came. Stephanie is the same nurse that works for Dr. Goldman in his chemo clinic. She is very nice and remembered us. They just wanted to talk to us and get some information, although we never asked for anyone from oncology. Stephanie said she's met Dr. Burzynski and heard of antineoplastons, but nothing detailed. Shockingly, Dr. Bhatt, a fellow, claimed to have never heard of him or antineoplastons! I asked if she had ever heard of Avastin, the only FDA-approved drug for cancer. She said no and that her training had only been in "traditional" therapies. Anyway, they asked for the specific names of the antineoplastons, not just A10 and AS2-1. I offered Dr. Szymkowski's number and, surprisingly, Dr. Bhatt called and got the names (antineoplaston A10 is phenylacetylglutamine and phenylacetylisoglutamine and AS2-1 is phenylacetylglutamine and phenylacetic acid) and some general information. I doubt this will be useful to her or her patients, G-d help them.
Finally, Dr. Luck did start the process of transferring Leo's "care" to the hemotology department, instead of surgery. We're praying tomorrow brings some of the luck that has been alluding us...
posted by Yury at 7:50 PM
1 Comments:
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