The series of posts about how our life journey changed pretty much brings us up to speed. We're still in the ICU, infection under control, weaning off the ventilator.
Mr Trifectagirl has been progressing really well - so the nurses tell me. I've got the dreaded lurgy, so have opted not to go in and see him for a couple of days. Although it's probably well after I was infectious, but ICU staff agree that it's better I stay away for a couple of days.
He's been off the ventilator for extended periods, including over night and they're beginning to work with the the tracheotomy to be able to block that off and work on speech.
Hopefully we'll be out of ICU and onto a ward soon!
Wednesday, 11 April 2012
Tuesday, 10 April 2012
Big steps forward
Mr Trifectagirl has made big steps forward in the last 48 hours or so.
He's been moved to a room with a window, so hopefully some natural light will help his mood and get him back into a day/night rhythm.
A chest CT is showing that the mediastinitus appears cleared up/under control.
He's spending longer and longer off the ventilator, and they were going to attempt having him off over night (no update as at the time of writing).
His right foot, that seemed to have dropped off on movement, has started moving again.
An old high school friend is a kidney specialist and happens to have a couple of patients in ICU at the moment, so he always drops by and says hi whenever he's in the unit. And basically pulling no punches, telling Mr Trifectagirl he's got a long hard road ahead for re-hab.
Two of his closer friends have started to visit, as has our Minister and some of Mr Trifectagirl's friends from church.
It's been a good Easter!
He's been moved to a room with a window, so hopefully some natural light will help his mood and get him back into a day/night rhythm.
A chest CT is showing that the mediastinitus appears cleared up/under control.
He's spending longer and longer off the ventilator, and they were going to attempt having him off over night (no update as at the time of writing).
His right foot, that seemed to have dropped off on movement, has started moving again.
An old high school friend is a kidney specialist and happens to have a couple of patients in ICU at the moment, so he always drops by and says hi whenever he's in the unit. And basically pulling no punches, telling Mr Trifectagirl he's got a long hard road ahead for re-hab.
Two of his closer friends have started to visit, as has our Minister and some of Mr Trifectagirl's friends from church.
It's been a good Easter!
How our life journey changed - part three
Mr Trifectagirl was now stable after the insertion of the stent, and spent two weeks listed as 'critical but stable'. Now he had to battle major infection - sepsis and something called mediastinitus - an infection around the lungs/heart area in his chest cavity.
The doctors told me that since he's relatively fit and healthy he had a good chance of beating the infections. I must have looked rather surprised at the 'fit and healthy' comment since he weighed in at 116kg, and had a history of heart problems. Apparently mediastinitus is common in esophageal cancer patients, so comparatively, yes he is fit and healthy!
He was pumped full of antibiotics and an anti-fungal thrown in for good measure, and kept under sedation for close to two weeks. He was on a ventilation for breathing support. It wasn't doing all the work, just taking some of the load so he didn't get too tired.
This period was hard. Doctors couldn't tell me what would happen - they didn't know as they were flying blind on his treatment, operating on best guess on what to do. The first week the ICU consultant just crossed his figures every time he saw me - it's all they could do. The 2IC kept me updated constantly. Consulting internationally they were being told that they were doing all they could do in terms of treatment.
I figured that he wouldn't want his friends to see him, and if the worst happened remember him, looking like this, so we kept them away. He wasn't responding due to the sedation, and looked terrible with lines, the ventilator and all sorts of stuff going everywhere.
Over the course of that two weeks, he fought really hard and it appears he's beaten both infections. I figured we were moving forward when the ICU consult didn't cross his fingers every time he saw me, and the 2IC didn't make a bee-line for me the moment I arrived to update me. I asked the 2IC about it, and he responded with 'you noticed that?' - Ummm, Yep. It was a combination of both moving forward and they didn't know what else to tell me.
As we got past the one week mark, Mr Trifectagirl was getting agitated with a breathing tube in whenever they tried to lift the sedation, so I consented to have a tracheostomy done on day 10 to make him more comfortable.
After that, they were able to start pulling back on the sedation and we could start to assess the damage of the stroke.
The doctors told me that since he's relatively fit and healthy he had a good chance of beating the infections. I must have looked rather surprised at the 'fit and healthy' comment since he weighed in at 116kg, and had a history of heart problems. Apparently mediastinitus is common in esophageal cancer patients, so comparatively, yes he is fit and healthy!
He was pumped full of antibiotics and an anti-fungal thrown in for good measure, and kept under sedation for close to two weeks. He was on a ventilation for breathing support. It wasn't doing all the work, just taking some of the load so he didn't get too tired.
This period was hard. Doctors couldn't tell me what would happen - they didn't know as they were flying blind on his treatment, operating on best guess on what to do. The first week the ICU consultant just crossed his figures every time he saw me - it's all they could do. The 2IC kept me updated constantly. Consulting internationally they were being told that they were doing all they could do in terms of treatment.
I figured that he wouldn't want his friends to see him, and if the worst happened remember him, looking like this, so we kept them away. He wasn't responding due to the sedation, and looked terrible with lines, the ventilator and all sorts of stuff going everywhere.
Over the course of that two weeks, he fought really hard and it appears he's beaten both infections. I figured we were moving forward when the ICU consult didn't cross his fingers every time he saw me, and the 2IC didn't make a bee-line for me the moment I arrived to update me. I asked the 2IC about it, and he responded with 'you noticed that?' - Ummm, Yep. It was a combination of both moving forward and they didn't know what else to tell me.
As we got past the one week mark, Mr Trifectagirl was getting agitated with a breathing tube in whenever they tried to lift the sedation, so I consented to have a tracheostomy done on day 10 to make him more comfortable.
After that, they were able to start pulling back on the sedation and we could start to assess the damage of the stroke.
Monday, 9 April 2012
How Our Life Journey Changed - part 2
After Mr Trifectagirl took his turn for the worse, I was asked to wait in a a short-term waiting area. And I received a call from his cardiologist, who was at a training weekend interstate.
And the news was bad. Very bad. What they suspected he had has a very, very low survival rate. And the only chance was major chest surgery.
I spent pretty much the whole day filled with dread of being a widow with a 1 year old by the end of the day. Mr Trifectagirl had fantastic nurses day one, and I will be forever grateful to them for their support.
I called friends and they arrived to support me for the afternoon. And what was going to happen chopped and changed so frequently over the day. Surgery. No Surgery. Past surgeries a problem. Past surgeries probably will help in survival.
At one point they sent me home to rest for a little while. I then received a call to come into the hospital, which my step-mother joined me. We were ushered into one of the family rooms (which the fantastic volunteers in the unit apologised for the state of - a family member of another patient had punched through the walls the week prior and they hadn't had a chance to repair the damage), and I commented 'if one person comes through the door, it's not good'. In came the nurse. But she said she wanted to be there with me, and that she was being followed by a whole hoard of heads of departments! One was the cardiologist, who had rushed back from the training. He got the job of explaining to me what had happened.
A hole had formed between the oesophagus and the heart - it had taken soo long to figure out what had happened as it didn't look like they were expecting on scans - it was much smaller and was more like a valve than an actual hole (red herring #2). Due to the hole, there was a bad infection and an air-bubble had gotten into the blood stream. That air-bubble has resulted in a stroke.
The first priority was to fix that hole. Except that no-one would go in to do it. All of his past surgeries made it too risky to do the normal fix of more surgery. But the hole needed to be fixed or he would die. Apparently the heads of about 5 different departments had been collaborating and researching to come up with a solution. And they did. A solution with no guarantees. A solution with only one survivor from a sample of patients numbering less than 10 world wide. But a solution none the less. A stent needed to be inserted in his oesophagus to cover the hole and give it a chance to heal, which is normally done by pumping air in and giving it a bit more room for an gastro-enterology doc to manoeuvre. But that could result in another stroke.
So in comes some funky radiology doctor, who performs procedures under imaging - he told me 'we get everything that no one else wants to touch'. So he attempted an insertion without any air using only imaging to guide him (and the consent form I signed said 'attempted'). They didn't know if he would survive this at all.
That was a very, very hard hour and I am so grateful that the Minister who married us came and sat with us through-out. He arrived in time to say a prayer and give Mr Trifectagirl a blessing prior, too. The Minister said 'I don't have an 'oh crap' feeling. I've been through hairy medical situations with families a lot, and I don't have an 'oh crap' feeling.'
We got back to ICU, and the nurse greeted me with the biggest smile - Mr Trifectagirl made it through the procedure. He now had a fighting chance of survival.
And the news was bad. Very bad. What they suspected he had has a very, very low survival rate. And the only chance was major chest surgery.
I spent pretty much the whole day filled with dread of being a widow with a 1 year old by the end of the day. Mr Trifectagirl had fantastic nurses day one, and I will be forever grateful to them for their support.
I called friends and they arrived to support me for the afternoon. And what was going to happen chopped and changed so frequently over the day. Surgery. No Surgery. Past surgeries a problem. Past surgeries probably will help in survival.
At one point they sent me home to rest for a little while. I then received a call to come into the hospital, which my step-mother joined me. We were ushered into one of the family rooms (which the fantastic volunteers in the unit apologised for the state of - a family member of another patient had punched through the walls the week prior and they hadn't had a chance to repair the damage), and I commented 'if one person comes through the door, it's not good'. In came the nurse. But she said she wanted to be there with me, and that she was being followed by a whole hoard of heads of departments! One was the cardiologist, who had rushed back from the training. He got the job of explaining to me what had happened.
A hole had formed between the oesophagus and the heart - it had taken soo long to figure out what had happened as it didn't look like they were expecting on scans - it was much smaller and was more like a valve than an actual hole (red herring #2). Due to the hole, there was a bad infection and an air-bubble had gotten into the blood stream. That air-bubble has resulted in a stroke.
The first priority was to fix that hole. Except that no-one would go in to do it. All of his past surgeries made it too risky to do the normal fix of more surgery. But the hole needed to be fixed or he would die. Apparently the heads of about 5 different departments had been collaborating and researching to come up with a solution. And they did. A solution with no guarantees. A solution with only one survivor from a sample of patients numbering less than 10 world wide. But a solution none the less. A stent needed to be inserted in his oesophagus to cover the hole and give it a chance to heal, which is normally done by pumping air in and giving it a bit more room for an gastro-enterology doc to manoeuvre. But that could result in another stroke.
So in comes some funky radiology doctor, who performs procedures under imaging - he told me 'we get everything that no one else wants to touch'. So he attempted an insertion without any air using only imaging to guide him (and the consent form I signed said 'attempted'). They didn't know if he would survive this at all.
That was a very, very hard hour and I am so grateful that the Minister who married us came and sat with us through-out. He arrived in time to say a prayer and give Mr Trifectagirl a blessing prior, too. The Minister said 'I don't have an 'oh crap' feeling. I've been through hairy medical situations with families a lot, and I don't have an 'oh crap' feeling.'
We got back to ICU, and the nurse greeted me with the biggest smile - Mr Trifectagirl made it through the procedure. He now had a fighting chance of survival.
Sunday, 8 April 2012
How our life journey changed - part 1
A large group of friends headed out for lunch on March 17 for Mr Trifectagirl's birthday. A celebration that had been a year in the planning.
Half way through, he appeared to be coming down with a fever, but we continued on. He eventually asked to be taken to hospital, an hour or so away. So we quickly got packed up and I took him to the main hospital. I made it to the hospital in 40 minutes. I won't be surprised if speeding fines appear at some point.
On arival at the emergency department, Mr Trifectagirl went weak just inside the doors, and I couldn't hold him and J, so down he went. On his face. Breaking his nose. I feel bad that my first thought after he was stableised was 'Doesn't matter if his glasses are broken, he ordered new ones Wednesday'.
Family came and got J for me, and I stayed with Mr Trifectagirl for about two hours before I headed home to feed J and rest. We're used to emergency with his ongoing heart issues, and it didn't seem too bad at that time. So home I went. I called and checked in at about 9:30, and he had dehydrated, and they thought he'd go to the high dependancy unit.
At 3am I got a call from the hospital saying Mr Trifectagirl was in the Intensive Care Unit - NOT where I was expecting him to go.
Of course, a phone call to my dad, who thankfully lives between our home and the hospital, to look after J, and I was in there about 4am. I stayed until 6 as they were taking him for scans. At that point they thought it was an infected gall bladder that required getting an infection under control and surgery to remove it once he's stable - red herring #1.
I returned at about 10am. and not long after he took a very dramatic turn for the worse. And that's when everything turned up-side down.
Half way through, he appeared to be coming down with a fever, but we continued on. He eventually asked to be taken to hospital, an hour or so away. So we quickly got packed up and I took him to the main hospital. I made it to the hospital in 40 minutes. I won't be surprised if speeding fines appear at some point.
On arival at the emergency department, Mr Trifectagirl went weak just inside the doors, and I couldn't hold him and J, so down he went. On his face. Breaking his nose. I feel bad that my first thought after he was stableised was 'Doesn't matter if his glasses are broken, he ordered new ones Wednesday'.
Family came and got J for me, and I stayed with Mr Trifectagirl for about two hours before I headed home to feed J and rest. We're used to emergency with his ongoing heart issues, and it didn't seem too bad at that time. So home I went. I called and checked in at about 9:30, and he had dehydrated, and they thought he'd go to the high dependancy unit.
At 3am I got a call from the hospital saying Mr Trifectagirl was in the Intensive Care Unit - NOT where I was expecting him to go.
Of course, a phone call to my dad, who thankfully lives between our home and the hospital, to look after J, and I was in there about 4am. I stayed until 6 as they were taking him for scans. At that point they thought it was an infected gall bladder that required getting an infection under control and surgery to remove it once he's stable - red herring #1.
I returned at about 10am. and not long after he took a very dramatic turn for the worse. And that's when everything turned up-side down.
Friday, 6 April 2012
ICU - Week 3
Mr Trifectagirl has progressed really well this week.
He is being gradually weaned off the ventilator, and his time off is getting longer every few days or so. He has been taken off IV feeding, and is now fully fed by nasal-gastric feeding, which is another really big step.
Depression, however appears to be a problem. An understandable problem, but there. Being unable to communicate is probably impacting on this. I have no way of knowing if I'm right at this stage, but I have my suspicions.
So after the suggestions and advice of on-line friends, and speaking to the doctor on duty today, I have made up a communication chart with about 30 words on it, mostly to do with comfort/pain and location; yes/no and please/thank you (because courtesy/politeness is important to Mr Trifectagirl -he'd hate not having that option!!), and entertainment/mental stimulation (TV, Radio, book, on, off, volume, up, down etc). He'll get a radio tomorrow, and the point chart. Hopefully that makes life stuck in a bed with restricted movement and unable to speak a bit more bearable for him.
He is in what must be the worst room in the unit - the poor man is stuck in a box. The section phone where reception volunteers call to see if patients can have visitors or various scans and tests outside the unit are arranged, is outside his room, ringing day and night. Most beds have either a window, or a view out the window in the room across the hall. He's in an internal box with no natural light. Thankfully this is on the radar of the senior doctors in the unit and a move to a window room has been discussed at team meetings, but an ICU is a busy place with a fast turn-over, and shifting rooms isn't easy. Add Easter and the unfortunate road accidents that happen, and it may be into the next week before a move could even be possible.
I've been hesitant to have people other than family visit up till now, just as I've been pretty certain that he would not have wanted friends to remember him (if the worst happened) as a unconscious person on a bed with tubes and wires everywhere. Plus he is still very weak, and I worry about him getting too tired.
But he's now conscious and interacting pretty well, so we've started bringing in J to see him each day. J doesn't cope too well - he can't get down and run around!!! But he interacts with Daddy, starting 'round and round the garden, like a teddy bear' which daddy always played with him.
Today the Minister who married us visited, as did a friend for the first time. Unfortunately he seemed confused when I asked if the friend had visited (we'd discussed the intention to visit this morning), but I'm not sure if that's a communication issue. Maybe the point chart will help. If he's coping generally, I'll slowly start letting more friends see him. It will be good to have the load lifted a bit and for him to get different stimulation.
Something to look forward to is once he's off the ventilator for longer periods they may be able to take him to a courtyard for some fresh air and sun-shine (not that the forecast allows for it in the near future!!). I'll be asking them to let me know when they're taking him out so I can bring J in and Mr Trifectagirl can watch him run around.
He is being gradually weaned off the ventilator, and his time off is getting longer every few days or so. He has been taken off IV feeding, and is now fully fed by nasal-gastric feeding, which is another really big step.
Depression, however appears to be a problem. An understandable problem, but there. Being unable to communicate is probably impacting on this. I have no way of knowing if I'm right at this stage, but I have my suspicions.
So after the suggestions and advice of on-line friends, and speaking to the doctor on duty today, I have made up a communication chart with about 30 words on it, mostly to do with comfort/pain and location; yes/no and please/thank you (because courtesy/politeness is important to Mr Trifectagirl -he'd hate not having that option!!), and entertainment/mental stimulation (TV, Radio, book, on, off, volume, up, down etc). He'll get a radio tomorrow, and the point chart. Hopefully that makes life stuck in a bed with restricted movement and unable to speak a bit more bearable for him.
He is in what must be the worst room in the unit - the poor man is stuck in a box. The section phone where reception volunteers call to see if patients can have visitors or various scans and tests outside the unit are arranged, is outside his room, ringing day and night. Most beds have either a window, or a view out the window in the room across the hall. He's in an internal box with no natural light. Thankfully this is on the radar of the senior doctors in the unit and a move to a window room has been discussed at team meetings, but an ICU is a busy place with a fast turn-over, and shifting rooms isn't easy. Add Easter and the unfortunate road accidents that happen, and it may be into the next week before a move could even be possible.
I've been hesitant to have people other than family visit up till now, just as I've been pretty certain that he would not have wanted friends to remember him (if the worst happened) as a unconscious person on a bed with tubes and wires everywhere. Plus he is still very weak, and I worry about him getting too tired.
But he's now conscious and interacting pretty well, so we've started bringing in J to see him each day. J doesn't cope too well - he can't get down and run around!!! But he interacts with Daddy, starting 'round and round the garden, like a teddy bear' which daddy always played with him.
Today the Minister who married us visited, as did a friend for the first time. Unfortunately he seemed confused when I asked if the friend had visited (we'd discussed the intention to visit this morning), but I'm not sure if that's a communication issue. Maybe the point chart will help. If he's coping generally, I'll slowly start letting more friends see him. It will be good to have the load lifted a bit and for him to get different stimulation.
Something to look forward to is once he's off the ventilator for longer periods they may be able to take him to a courtyard for some fresh air and sun-shine (not that the forecast allows for it in the near future!!). I'll be asking them to let me know when they're taking him out so I can bring J in and Mr Trifectagirl can watch him run around.
Thursday, 5 April 2012
Thankfully Not a Widow
Mr Trifectagirl celebrated his 46th birthday on St Patricks Day, March 17. Unfortunately he also suffered the most significant/dangerous complication of a heart procedure that he had had about 4 weeks prior.
Then he had a stroke as a complication to the complication.
The primary complication damn near killed him and I fully expected to be a widow at the close of March 18. Thankfully he survived an only option, experimental procedure that saved his life.
Three weeks down the track and we are still in Intensive Care and progressing very, very slowly. We'll be there for a number of weeks still.
Now that I'm more settled, I plan to blog my ICU experience, and our recovery/rehab experience and finding myself very suddenly, effectively a single mum to an energetic one year old boy.
Then he had a stroke as a complication to the complication.
The primary complication damn near killed him and I fully expected to be a widow at the close of March 18. Thankfully he survived an only option, experimental procedure that saved his life.
Three weeks down the track and we are still in Intensive Care and progressing very, very slowly. We'll be there for a number of weeks still.
Now that I'm more settled, I plan to blog my ICU experience, and our recovery/rehab experience and finding myself very suddenly, effectively a single mum to an energetic one year old boy.
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