It's Monday now, the day after surgery and we are collectively exhaling after what has been a long 24 hours for Phil. He did very well during his surgery although he did bleed quite a bit and needed additional platelets during the 3 hour procedure. Dr. Mansfield found very infected ethmoid and sphenoid sinuses and had to remove a small portion of free floating bone deep inside the sinus area which appeared infected as well. He called in Ghosh to observe because the bone removed was very close to the paracranial flap he had created during the previous surgery for mucor. From the gross appearance in the OR it looks like a routine bacterial sinus infection. So, after packing the sinus cavity with three different antibiotic laden products he sent Phil up to the ICU to recover and then back to his room on 3 South. He recovered fairly quickly and was groggy but gave me the thumbs up when I came in to see him.
The rest of the morning was spent hanging out and helping him eat ice chips and come out of the heavy anesthesia. Phil's brother David had come down for a few days and we spent the day napping, telling stories and engaging/encouraging Phil. He did fine until just after I left to take my kids to dinner and get them to bed for the night. Apparently the drainage from his surgery combined with his oral intake was too much for his stomach and he threw up all of it. Poor guy. He wasn't in any pain but according to David he was pissed off! He hadn't eaten in 4 days and he was finally at his rock bottom. He was sick and tired of feeling sick and tired (I can't believe it took this long) and just wanted to eat something and feel better. Once things settled down he and David watched The Godfather and he finally fell asleep for the night.
This morning he is feeling better after receiving more platelets overnight and getting some much needed rest. He ate some Jello and broth and started in on Gatorade and saltines. A repeat MRI was done late morning to check the status of things post operatively and we got the report on his cultures - all are growing staph aureus, NO MUCOR. So, we're dealing with a routine sinus infection and got to it very early. We are so thankful and Phil was fist pumping. Major relief around here. He is so tired and fatigued and although I know he would have rallied for the mucor fight too, I am glad he doesn't have to.
Now he can sleep, eat, take his medicine, build blood and hopefully go home in a few more days. Never has a sinus infection been a more welcome diagnosis!
Showing posts with label infection. Show all posts
Showing posts with label infection. Show all posts
Monday, February 14, 2011
Friday, October 1, 2010
Man on Wire
There's this little journal I carry around with me everywhere I go. Or at least I did. Originally I recorded all the overwhelming information that Dr. Kossman gave us at each and every visit- from the initial diagnosis, to the details of the chemotherapy on through to each hospitalization and follow up visit. Over time it has evolved to include consultations, phone calls, CT and MRI results, lab reports and what read like nursing notes regarding his intake/output, blood sugars, and assorted minutiae. Anything and everything I might need to remember or refer to has been written down "for the record".
I say I "did" carry it everywhere I go because lately, my personal ambition (dare I say, crusade) to record every fact of this medical odyssey (dare I say, nightmare) has finally wavered and I haven't always had it with me. Now I've got scraps of paper everywhere or am relying on memory...sleep-deprived memory. More often than not, when it is with me, I don't reflexively reach for it when the doctors come into the room. Of late, the consults, labs, scans and general information has been coming at us so rapid-fire and the content has been so entirely consuming that to take short-hand notes for posterity seems absurd at best. More to the point, it's hard to write when I've got Phil's hands in mine.
Given all the results we've absorbed lately, I've been thinking about all the things that can't be measured, scanned and quantified such as Phil's sense of well-being and his inner life. Although there are no formal parameters to measure an individual by, when someone is "off" you can just tell. Now I believe Phil TOTALLY gets what is going on with his situation. When the physicians come in and tell him the results of his cultures and biopsies, tell him of his need for surgery NOW, tell him the risks and benefits of procedures etc., I know he gets it in his mind. But Phil is different since this hospitalization, encephalitis and eye infection. His affect is a bit flatter. His emotions aren't full range. That depth you expect with him just isn't there. Some of his response is no doubt secondary to having had encephalitis, infection in the frontal lobe of his brain, and the effects of being barraged with so much medication. While he's still got that sparkle in his eye, he just can't go deep like he used to and still mount the fight he's facing. He can't let a shadow of a doubt in. Yet, miraculously, he has very little anxiety, AT ALL. There is a peace about him even as the physicians speak to him about the grave nature of his situation.
For those of us who are here with him it is clear that he is different but it is also evident that this may be a mercy. We who hear the undiluted facts, who hear the truth without sugar coating over and over again see that an inability for things to sink in too deeply is an incredible mercy that God has given Phil.
This morning he has been moved out of the ICU back up to the corner office on 3 south where he was received with smiles by the nurses on duty. His things were hanging in the closet, his "Kick It's Butt Phil" poster was hanging on the bulletin board where we left it and the door had a piece of paper on it that said 'reserved for P.C.' on it. It is strangely comforting to be back in this room, away from the intensely sick folks in the unit and yet, disquieting to still be HERE at all.
Dr. Kossman called last night on my way home from HERE and we had a long conversation filled with medical details (what I would typically pull over to the side of the road to write down in 'the book ') and philosophical questions regarding Phil's future course. All of his brain tissue cultures are growing Mucor, and only Mucor, the nasty fungus. It is what we all expected but have been praying against. The surgeon had told us that during the operation he saw evidence of a breach from the sinus/orbit into the frontal lobe so we know where the Mucor came from. That unfortunately is what is going on in the deep brain structures as well. It just sucks, plain and simple.
Additionally, there is still Mucor involved in Phil's eye and surrounding tissues, even though they have been stable. For now we are so pleased that he has come through the surgery and has not had progression of his eye issues but the Mucor is still there and it is still a formidable enemy. Our ammunition is Ambizone, a powerful antifungal, and surgery. Currently, the Ambizone is beginning to take a toll on Phil's kidney function and it is depleting his potassium levels. He is taking replacements of potassium routinely and his kidneys are being monitored closely. Surgery is a huge risk due to the substantive area involved and the ever present concerns for healing. And as I've said before, chemotherapy is off the table even though the lymphoma is still there in the background.
The physicians on his case- Kossman, Ghosh, Mansfield and Mayer will be convening a case conference to coordinate the best plan of care for our Iron Man. It is my desire and the hope of Dr. Kossman that Phil go home on Monday or Tuesday for home IV therapy with a home health nurse coming in to monitor his blood draws daily. We know he needs a change of venue, fresh air and his own surroundings. From there, we will keep you posted as always on the next steps as Phil walks this tightrope.
I say I "did" carry it everywhere I go because lately, my personal ambition (dare I say, crusade) to record every fact of this medical odyssey (dare I say, nightmare) has finally wavered and I haven't always had it with me. Now I've got scraps of paper everywhere or am relying on memory...sleep-deprived memory. More often than not, when it is with me, I don't reflexively reach for it when the doctors come into the room. Of late, the consults, labs, scans and general information has been coming at us so rapid-fire and the content has been so entirely consuming that to take short-hand notes for posterity seems absurd at best. More to the point, it's hard to write when I've got Phil's hands in mine.
Given all the results we've absorbed lately, I've been thinking about all the things that can't be measured, scanned and quantified such as Phil's sense of well-being and his inner life. Although there are no formal parameters to measure an individual by, when someone is "off" you can just tell. Now I believe Phil TOTALLY gets what is going on with his situation. When the physicians come in and tell him the results of his cultures and biopsies, tell him of his need for surgery NOW, tell him the risks and benefits of procedures etc., I know he gets it in his mind. But Phil is different since this hospitalization, encephalitis and eye infection. His affect is a bit flatter. His emotions aren't full range. That depth you expect with him just isn't there. Some of his response is no doubt secondary to having had encephalitis, infection in the frontal lobe of his brain, and the effects of being barraged with so much medication. While he's still got that sparkle in his eye, he just can't go deep like he used to and still mount the fight he's facing. He can't let a shadow of a doubt in. Yet, miraculously, he has very little anxiety, AT ALL. There is a peace about him even as the physicians speak to him about the grave nature of his situation.
For those of us who are here with him it is clear that he is different but it is also evident that this may be a mercy. We who hear the undiluted facts, who hear the truth without sugar coating over and over again see that an inability for things to sink in too deeply is an incredible mercy that God has given Phil.
This morning he has been moved out of the ICU back up to the corner office on 3 south where he was received with smiles by the nurses on duty. His things were hanging in the closet, his "Kick It's Butt Phil" poster was hanging on the bulletin board where we left it and the door had a piece of paper on it that said 'reserved for P.C.' on it. It is strangely comforting to be back in this room, away from the intensely sick folks in the unit and yet, disquieting to still be HERE at all.
Dr. Kossman called last night on my way home from HERE and we had a long conversation filled with medical details (what I would typically pull over to the side of the road to write down in 'the book ') and philosophical questions regarding Phil's future course. All of his brain tissue cultures are growing Mucor, and only Mucor, the nasty fungus. It is what we all expected but have been praying against. The surgeon had told us that during the operation he saw evidence of a breach from the sinus/orbit into the frontal lobe so we know where the Mucor came from. That unfortunately is what is going on in the deep brain structures as well. It just sucks, plain and simple.
Additionally, there is still Mucor involved in Phil's eye and surrounding tissues, even though they have been stable. For now we are so pleased that he has come through the surgery and has not had progression of his eye issues but the Mucor is still there and it is still a formidable enemy. Our ammunition is Ambizone, a powerful antifungal, and surgery. Currently, the Ambizone is beginning to take a toll on Phil's kidney function and it is depleting his potassium levels. He is taking replacements of potassium routinely and his kidneys are being monitored closely. Surgery is a huge risk due to the substantive area involved and the ever present concerns for healing. And as I've said before, chemotherapy is off the table even though the lymphoma is still there in the background.
The physicians on his case- Kossman, Ghosh, Mansfield and Mayer will be convening a case conference to coordinate the best plan of care for our Iron Man. It is my desire and the hope of Dr. Kossman that Phil go home on Monday or Tuesday for home IV therapy with a home health nurse coming in to monitor his blood draws daily. We know he needs a change of venue, fresh air and his own surroundings. From there, we will keep you posted as always on the next steps as Phil walks this tightrope.
Wednesday, September 29, 2010
Brain Surgery
I finally fell asleep late last night despite my intention to get to bed early. Instead I spent the evening sitting bedside for several hours waiting to hear the results of a late evening CT scan. I had just finished reading Lance Armstrong's book "It's Not About the Bike" to Phil from his Kindle around 5:30 p.m. yesterday when Phil started twitching his arms and legs and squeezing my hand. This continued and increased and it became obvious that he was having a generalized seizure. He was unable to respond to me although his eyes were open. The nurses came in immediately and started taking vitals, etc and the doctors were called. In summary, it only lasted about 2 minutes and he had no lasting effects. His CT was normal and he's had none since. It was just another indicator of the infection and swelling in his brain and the need for immediate surgery.
Surgery got underway at 7:30 this morning as planned and Phil was smiling and mellow, ready for what was ahead of him, yet subdued.
By 9:45 he was finished and Dr. Ghosh came to give us his report. He had indeed found a large abscess (3cm or about 2 inches) in the frontal lobe and was able to remove all of it. In doing so he confirmed that the source of the infection in the brain came from the eye and sinus infection. Although he had wanted to identify the infectious pathology in the OR he was unable to so we won't have those results for another 2-3 days. Phil did very well in surgery and had no complications and we are all breathing a huge sigh of relief.
So, Dr. Ghosh debrided the abscess and put in a paracranial flap to increase the efficacy of the antibiotics. Phil got his titanium plate and is now a million dollar man. He will have a repeat CT scan tomorrow to see that everything is holding steady and once the pathogen(s) been identified and a plan of treatment is in place, he could come home as soon as Monday.
When he wakes up in the Medical ICU I will tell Phil how he's been covered by the prayers of hundreds. And I will tell him how God works through people like Dr. Ghosh to perform nothing short of a miracle today.
Surgery got underway at 7:30 this morning as planned and Phil was smiling and mellow, ready for what was ahead of him, yet subdued.
By 9:45 he was finished and Dr. Ghosh came to give us his report. He had indeed found a large abscess (3cm or about 2 inches) in the frontal lobe and was able to remove all of it. In doing so he confirmed that the source of the infection in the brain came from the eye and sinus infection. Although he had wanted to identify the infectious pathology in the OR he was unable to so we won't have those results for another 2-3 days. Phil did very well in surgery and had no complications and we are all breathing a huge sigh of relief.
So, Dr. Ghosh debrided the abscess and put in a paracranial flap to increase the efficacy of the antibiotics. Phil got his titanium plate and is now a million dollar man. He will have a repeat CT scan tomorrow to see that everything is holding steady and once the pathogen(s) been identified and a plan of treatment is in place, he could come home as soon as Monday.
When he wakes up in the Medical ICU I will tell Phil how he's been covered by the prayers of hundreds. And I will tell him how God works through people like Dr. Ghosh to perform nothing short of a miracle today.
Wednesday, September 22, 2010
All In
We are no longer living day to day around here, time is now marked in 12 hour increments. That's how quickly things are changing and progressing.
Phil had another MRI this morning and the cultures have yielded more definitive results. Today has been a big and unfortunately, very difficult day. The cultures show absolute evidence of a mixed bacterial and fungal infection in the sinuses and henceforth in the brain. The fungus is called Mucormycosis and is very common in diabetics and immunosuppressed patients. The MRI shows advancement since yesterday of the infection to involve new portions of the brain. So despite having been on high doses of antibiotics and antifungals, ground is not being gained.
The optimal treatment for this fungus is surgical debridement, which although radical, is Phil's best chance for eradicating the infection. Combined with his antifungals, tomorrow morning he will be having a very involved neurosurgery to remove his left sinuses, his left eye and orbit and portions of his left brain that are infected and non-functioning anyway. It's hard core -- as if it wasn't before. During the next several weeks his chemotherapy will have to be put on hold lest any further immunosuppression allow the Mucor to take the upper hand.
We are awaiting the final debriefing from the team of surgeons and are covering Phil with our prayers and love. We (Jeff, David, Anita and I) are also telling stories and laughing a bit too. Phil is tired and a bit fearful for tomorrow's events but he is also ready to go. He's not one to sit back and do nothing if there's something to be done. He's going for it. Bravest man I know, facing down terrible odds and "fighting a raging fire in the middle of a hurricane".
If Phil were playing poker, I'd say he was all in. Trusting God, and all in.
Phil had another MRI this morning and the cultures have yielded more definitive results. Today has been a big and unfortunately, very difficult day. The cultures show absolute evidence of a mixed bacterial and fungal infection in the sinuses and henceforth in the brain. The fungus is called Mucormycosis and is very common in diabetics and immunosuppressed patients. The MRI shows advancement since yesterday of the infection to involve new portions of the brain. So despite having been on high doses of antibiotics and antifungals, ground is not being gained.
The optimal treatment for this fungus is surgical debridement, which although radical, is Phil's best chance for eradicating the infection. Combined with his antifungals, tomorrow morning he will be having a very involved neurosurgery to remove his left sinuses, his left eye and orbit and portions of his left brain that are infected and non-functioning anyway. It's hard core -- as if it wasn't before. During the next several weeks his chemotherapy will have to be put on hold lest any further immunosuppression allow the Mucor to take the upper hand.
We are awaiting the final debriefing from the team of surgeons and are covering Phil with our prayers and love. We (Jeff, David, Anita and I) are also telling stories and laughing a bit too. Phil is tired and a bit fearful for tomorrow's events but he is also ready to go. He's not one to sit back and do nothing if there's something to be done. He's going for it. Bravest man I know, facing down terrible odds and "fighting a raging fire in the middle of a hurricane".
If Phil were playing poker, I'd say he was all in. Trusting God, and all in.
Tuesday, September 21, 2010
On Our Knees
Today's blog is going to be short and to the point. There are too many details to report and frankly they change with the hour yet don't change what you really need to know. Phil needs prayer and lots of it.
As I am typing this he is undergoing surgery to diagnose the cause of this horrible infection in his brain. Since I last posted, the infection in and around his eye has worsened and it looks like we are dealing with a particularly "wicked" fungal infection (to quote Dr. Kossman). He and the 3 or 4 other specialists who've been consulted in this case are very concerned about the infection because it is extremely difficult to eradicate short of surgical debridement.
Debridement means going in and cleaning things out and since we're talking about the brain, well, you can grasp the gravity of the situation. As of today Phil has lost the vision in his left eye and there is reason to worry about the right eye as well. Fungal infections can spread quickly so information needs to be gathered quickly as well so the appropriate therapies can be continued or started.
The goal for today's surgery is diagnosis, not therapy or cure. That much has been made clear to us. Having said that, our hopes for today are for an uncomplicated surgical course, sufficient biopsies that will lead to productive treatment and no further surprises or obstacles.
The kids and I are surrounded by family and good friends, including Jeff Breland, and feel the love and prayers that have been pouring in. Phil is in excellent hands and Dr. Kossman has brought in the county's finest specialists in ENT oncology and neurosurgery. The rest, as ever, is in God's hands.
Saturday, September 18, 2010
Sweet Dreams
I'm sitting here next to Phil, the two of us "canoodling" according to the nurses, in his single hospital bed. This is a strange place to be writing the blog from, but it works for today. He's asleep, more or less, his slumber punctuated by the occasional fitful dream wherein he appears to be conducting an orchestra or perhaps, filing things. As an observer, I really can't tell. You see, I've never actually seen my husband dream. Usually I am asleep right beside him, not sitting next to him for hours at a time watching him reach for unseen objects or listening to his snippets of conversations or partially delivered speeches . It is both educational and instructional but at this juncture I have to say it is mostly unsettling.
He was like this all of yesterday and it was sobering, in case you couldn't tell from my post. The infection combined with the fatigue and all the meds really had him wiped out. When I called Phil's cell phone this morning I really wasn't expecting him to answer. When he did I was beyond thankful just to hear his raspy voice. What's more, he told me he was reading his Kindle -- I about choked on my coffee! Talk about a turn around. He still sounded terrible but he was reading, focusing, and using his mind Glory Be to God.
I was really anxious to see him and talk through all that had happened in the last 36 hours; to see what he remembered and make certain he understood what was going on. When I finally got everything handled at home and got over to the hospital I walked in to find him in much the same condition as yesterday - conducting his magnum opus. Turns out he was getting another unit of blood and was totally snowed on 50 mg of Benadryl to prevent an allergic reaction to the blood products -- so he's completely gonzo, zonked, out-of-it, looped, in la-la land again. Crap! What have you done to my husband - I wanted to talk to him! This time though, I get it. It's not all infection and bad news making him act this way. I have that little gift of having heard his voice, the clarity in it and the focused intent in his words to hang onto.
Today being Saturday, apparently no physician in their right mind wanted to round on the patients before 3 o'clock so I timed my visit just right. I was here in time to get the report of the day straight from the oncologist and infectious disease doc's mouths and things are indeed looking better. It is so very good to have their objective report because even as a trained medical professional, it is difficult to know what to make of such a difficult situation when one is personally involved.
His blood cultures are indeed growing out a bacterial infection, E. coli. Before you freak out -- we're not talking about the tainted hamburger meat type or the flesh-eating bacteria here. Just plain old garden variety E. coli. That's not to say it is harmless but just don't go losing your minds. The ID folks believe his port should be fine and they are making several changes to his antibiotic regimen. He was apparently on 5 when I thought he was on 3. Shows you what happens when you grab a cat nap. He will continue on ceftriaxone as well as the antiviral and antifungal.
His CSF cultures have yet to grow any bacteria which is good news. The rest of the studies will be in later in the week - things like Valley Fever, toxoplasmosis, herpes, etc. The outliers so to speak. Until then it's stay the course.
Phil will get more RBCs today to boost his anemia and begin to get Neupogen (a more rapid acting agent) to stimulate WBC cell production. Once his WBCs come back he should rebound much more quickly and feel significantly better. Lastly he will see the ophthalmologist to begin some exercises to regain the use of the muscles in his eye and prevent any further losses.
He's got his work and recovery cut out for him. It really amazes me to think, he's only completed one cycle of chemotherapy. Yikes, just 4 to 6 more to go. Think we'll stick with taking those one day at a time. For now, so what if Phil likes to conduct orchestras, or file things, or compose speeches in his sleep? I think it's great that he's dreaming these few days away in a medicinal fog - God know he's earned it.
He was like this all of yesterday and it was sobering, in case you couldn't tell from my post. The infection combined with the fatigue and all the meds really had him wiped out. When I called Phil's cell phone this morning I really wasn't expecting him to answer. When he did I was beyond thankful just to hear his raspy voice. What's more, he told me he was reading his Kindle -- I about choked on my coffee! Talk about a turn around. He still sounded terrible but he was reading, focusing, and using his mind Glory Be to God.
I was really anxious to see him and talk through all that had happened in the last 36 hours; to see what he remembered and make certain he understood what was going on. When I finally got everything handled at home and got over to the hospital I walked in to find him in much the same condition as yesterday - conducting his magnum opus. Turns out he was getting another unit of blood and was totally snowed on 50 mg of Benadryl to prevent an allergic reaction to the blood products -- so he's completely gonzo, zonked, out-of-it, looped, in la-la land again. Crap! What have you done to my husband - I wanted to talk to him! This time though, I get it. It's not all infection and bad news making him act this way. I have that little gift of having heard his voice, the clarity in it and the focused intent in his words to hang onto.
Today being Saturday, apparently no physician in their right mind wanted to round on the patients before 3 o'clock so I timed my visit just right. I was here in time to get the report of the day straight from the oncologist and infectious disease doc's mouths and things are indeed looking better. It is so very good to have their objective report because even as a trained medical professional, it is difficult to know what to make of such a difficult situation when one is personally involved.
His blood cultures are indeed growing out a bacterial infection, E. coli. Before you freak out -- we're not talking about the tainted hamburger meat type or the flesh-eating bacteria here. Just plain old garden variety E. coli. That's not to say it is harmless but just don't go losing your minds. The ID folks believe his port should be fine and they are making several changes to his antibiotic regimen. He was apparently on 5 when I thought he was on 3. Shows you what happens when you grab a cat nap. He will continue on ceftriaxone as well as the antiviral and antifungal.
His CSF cultures have yet to grow any bacteria which is good news. The rest of the studies will be in later in the week - things like Valley Fever, toxoplasmosis, herpes, etc. The outliers so to speak. Until then it's stay the course.
Phil will get more RBCs today to boost his anemia and begin to get Neupogen (a more rapid acting agent) to stimulate WBC cell production. Once his WBCs come back he should rebound much more quickly and feel significantly better. Lastly he will see the ophthalmologist to begin some exercises to regain the use of the muscles in his eye and prevent any further losses.
He's got his work and recovery cut out for him. It really amazes me to think, he's only completed one cycle of chemotherapy. Yikes, just 4 to 6 more to go. Think we'll stick with taking those one day at a time. For now, so what if Phil likes to conduct orchestras, or file things, or compose speeches in his sleep? I think it's great that he's dreaming these few days away in a medicinal fog - God know he's earned it.
Friday, September 17, 2010
I Hate Cancer
Don't even know where to begin this one. It's only been a day or so but I've lost all sense of time again. Wasn't it just the other day I was practically bragging about how wonderfully everything was going? Reveling in the blah-ness of it all? Extolling the merits of being underwhelmed? Well, let's just say that ship has sailed.
It started out simply enough in the mid afternoon two days ago. A mild headache, nothing a few Tylenol couldn't take care of. That is until a few Tylenol couldn't take care of it and Phil had to move on to the big guns. By that evening we were making a call to the doctor because 10 mg of oxycodone weren't doing jack-squat and he was in excruciating pain whenever he moved his left eye. Fortunately for us, and one of God's small mercies, Dr. Kossman was on call.
Before I continue, I have to say this. It really can't be understated how awesome it is to reach your own doctor when you call the on-call service in a crisis. There is no explaining to do, no background to give, no time wasted. You just hit the ground running. And who's voice do you most want to hear when you're in crisis but the one who's been holding your hand and shepherding you through? So, when we reached Dr. Kossman I already felt better for Phil and whatever the hell was going on with him. The Captain was at the helm.
Back to the drama that was unfolding in my bedroom (don't even go there). After much discussion we decided to try other options for pain relief rather than spend the night in the ER and would check in with Dr. Kossman first thing in the morning. Despite our best laid plans however, it was a long, pain-filled, sleepless night. In the morning, because Phil had developed double vision in his left eye and numbness across the left portion of his scalp during the night, we were sent to an ophthalmologist. By now Phil could barely open his left eye and it was bulging a bit.
After a very thorough eye exam, the working diagnosis was that he had an evolving cranial nerve palsy of the III and V cranial nerves. The III nerve controls the movements of the eye muscles and the 1st branch of the V nerve controls the sensation across his scalp. Some inflammatory process in the brain was to blame for this. But what? Tumor? Infection? He needed an MRI STAT. Sounds like a scene from ER -- but unfortunately it wasn't. To say he looked like shit is to be flattering and I know he didn't feel much better.
Dr. Kossman, being the consummate physician he is, wanted to order the MRI himself and who am I to stop him? The guy is freakin awesome. On a crazy busy clinic day, he walked across the street and spent 30 minutes looking over Phil's MRI from one month ago with two neuro-radiologists before seeing us to discuss our next move. He's just that kind of doctor. Oh, and he worked us into his already unforgiving schedule. When he took Phil's blood it showed the obvious -- profound anemia, next-to-no platelets, and only 200 WBCs. That alone would make anyone feel like crap but combine it with a bulging eyeball, headache, postchemotherapy, and no sleep...you get the picture. When given the option to go home after the MRI or go in the hospital for pain control and support, Phil cried "Uncle!" and he got a bed on 3 South faster than I've ever seen.
Things happened pretty fast from there on out. He had lots of labs drawn including blood cultures. He was given IV fluids and 2 units of RBCs and platelets. He had his MRI. A neurologist (Dr. Evans) consulted on his case. An infectious disease specialist (Dr. Mayer) consulted on his case. Dr. Kossman came and rounded on him at the end of his day ~ 8:30p.m. More blood was drawn. More platelets were hung. Vancomycin (an antibiotic), Acyclovir (an antiviral), and Amphotericin (an antifungal) were all hung. Pretty much the whole kitchen sink was going into the guy.
And here's why: According to the MRI the cranial nerve palsy is due to an inflammatory/infectious process going on in and around the L orbit and in the cavernous sinus deeper in the brain. Shit, his brain is infected. That's serious. No wonder there was so much damn foot traffic through his room this evening. Those were my thoughts on the drive home from the hospital last night, when I could start wrapping my mind around what was going on. It's amazing how long it takes things to sink in when you're in crisis mode.
Today as I write this we now know that his blood cultures are all growing bacteria, gram negative rods for you medical folks. It is not uncommon for neutrapenic (immunosuppressed) people to grow gram negative rods in their blood cultures. However, this suggests that Phil may have two separate processes going on. Dr. Mayer believes that to be the case. He thought out loud to me that his port could be the source of this blood infection and he will do everything he can to sterilize the blood with the antimicrobials to save the port. Otherwise he'll need a new port down the line.
As for the infection in the brain, he doubted that was related to the bacteria in the blood but he won't know until the cultures and studies come back in several more days. Phil did have a blood patch in late August with his first spinal tap which if done with infected blood could have been a source of contamination. However, Dr. Mayer believes the timing is too far out. So, we will watch and play the waiting game. Meanwhile, Phil is very tired, weak and out of it. Thankfully, he is also mostly out of pain.
As for the rest of us, well, what can I say? Our trains are ultimately hitched to Daddio's. Over the last few days the kids have been spending a lot of time with their Aunt Terry and cousin Josh. Thankfully and in further evidence that God is a genius, we have them nearby to love on the kids and provide distraction, comfort and a sense of routine. For Bennett and Olivia, their stress has been showing up with bad dreams and emotional outbursts or for instance, last night Bennett having a "bad headache".
I think it was at breakfast yesterday when I told Bennett I needed to call the doctor about something and out of nowhere he shouted "I hate cancer!" I just looked at him and said "I do too honey, we all do." There was nothing else to say to that. He nailed it.
It started out simply enough in the mid afternoon two days ago. A mild headache, nothing a few Tylenol couldn't take care of. That is until a few Tylenol couldn't take care of it and Phil had to move on to the big guns. By that evening we were making a call to the doctor because 10 mg of oxycodone weren't doing jack-squat and he was in excruciating pain whenever he moved his left eye. Fortunately for us, and one of God's small mercies, Dr. Kossman was on call.
Before I continue, I have to say this. It really can't be understated how awesome it is to reach your own doctor when you call the on-call service in a crisis. There is no explaining to do, no background to give, no time wasted. You just hit the ground running. And who's voice do you most want to hear when you're in crisis but the one who's been holding your hand and shepherding you through? So, when we reached Dr. Kossman I already felt better for Phil and whatever the hell was going on with him. The Captain was at the helm.
Back to the drama that was unfolding in my bedroom (don't even go there). After much discussion we decided to try other options for pain relief rather than spend the night in the ER and would check in with Dr. Kossman first thing in the morning. Despite our best laid plans however, it was a long, pain-filled, sleepless night. In the morning, because Phil had developed double vision in his left eye and numbness across the left portion of his scalp during the night, we were sent to an ophthalmologist. By now Phil could barely open his left eye and it was bulging a bit.
After a very thorough eye exam, the working diagnosis was that he had an evolving cranial nerve palsy of the III and V cranial nerves. The III nerve controls the movements of the eye muscles and the 1st branch of the V nerve controls the sensation across his scalp. Some inflammatory process in the brain was to blame for this. But what? Tumor? Infection? He needed an MRI STAT. Sounds like a scene from ER -- but unfortunately it wasn't. To say he looked like shit is to be flattering and I know he didn't feel much better.
Dr. Kossman, being the consummate physician he is, wanted to order the MRI himself and who am I to stop him? The guy is freakin awesome. On a crazy busy clinic day, he walked across the street and spent 30 minutes looking over Phil's MRI from one month ago with two neuro-radiologists before seeing us to discuss our next move. He's just that kind of doctor. Oh, and he worked us into his already unforgiving schedule. When he took Phil's blood it showed the obvious -- profound anemia, next-to-no platelets, and only 200 WBCs. That alone would make anyone feel like crap but combine it with a bulging eyeball, headache, postchemotherapy, and no sleep...you get the picture. When given the option to go home after the MRI or go in the hospital for pain control and support, Phil cried "Uncle!" and he got a bed on 3 South faster than I've ever seen.
Things happened pretty fast from there on out. He had lots of labs drawn including blood cultures. He was given IV fluids and 2 units of RBCs and platelets. He had his MRI. A neurologist (Dr. Evans) consulted on his case. An infectious disease specialist (Dr. Mayer) consulted on his case. Dr. Kossman came and rounded on him at the end of his day ~ 8:30p.m. More blood was drawn. More platelets were hung. Vancomycin (an antibiotic), Acyclovir (an antiviral), and Amphotericin (an antifungal) were all hung. Pretty much the whole kitchen sink was going into the guy.
And here's why: According to the MRI the cranial nerve palsy is due to an inflammatory/infectious process going on in and around the L orbit and in the cavernous sinus deeper in the brain. Shit, his brain is infected. That's serious. No wonder there was so much damn foot traffic through his room this evening. Those were my thoughts on the drive home from the hospital last night, when I could start wrapping my mind around what was going on. It's amazing how long it takes things to sink in when you're in crisis mode.
Today as I write this we now know that his blood cultures are all growing bacteria, gram negative rods for you medical folks. It is not uncommon for neutrapenic (immunosuppressed) people to grow gram negative rods in their blood cultures. However, this suggests that Phil may have two separate processes going on. Dr. Mayer believes that to be the case. He thought out loud to me that his port could be the source of this blood infection and he will do everything he can to sterilize the blood with the antimicrobials to save the port. Otherwise he'll need a new port down the line.
As for the infection in the brain, he doubted that was related to the bacteria in the blood but he won't know until the cultures and studies come back in several more days. Phil did have a blood patch in late August with his first spinal tap which if done with infected blood could have been a source of contamination. However, Dr. Mayer believes the timing is too far out. So, we will watch and play the waiting game. Meanwhile, Phil is very tired, weak and out of it. Thankfully, he is also mostly out of pain.
As for the rest of us, well, what can I say? Our trains are ultimately hitched to Daddio's. Over the last few days the kids have been spending a lot of time with their Aunt Terry and cousin Josh. Thankfully and in further evidence that God is a genius, we have them nearby to love on the kids and provide distraction, comfort and a sense of routine. For Bennett and Olivia, their stress has been showing up with bad dreams and emotional outbursts or for instance, last night Bennett having a "bad headache".
I think it was at breakfast yesterday when I told Bennett I needed to call the doctor about something and out of nowhere he shouted "I hate cancer!" I just looked at him and said "I do too honey, we all do." There was nothing else to say to that. He nailed it.
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