Thursday, 26 April 2012

A Picky Eater - and it's not the toddler!

I had a call this afternoon from the Dietitian working with Mr Trifectagirl. They’re concerned that he’s not eating and he has yet again pulled out the feeding tube. They want to try him without the tube for a while to see if not having the liquid feed encourages him to eat more.

The non-eating could be any number of reasons which he can’t express yet. He’s often complained about the quality of the food at this particular hospital, or it could be the stroke has impacted his experience of taste and texture.

They’re trying to go high calorie/ high protein to ensure he doesn’t start to loose muscle mass and therefore impact his recovery. The dietitian told me he’s down to 102kg/224lb from 116kg/255lb when he was admitted.

As she went through the list of what they’re trying it dawned on me that what they’re giving him is all stuff on his cardiologists no go/limit list for the diet he was supposed to be following prior to this happening (but wasn't) – eggs, full cream milk, cheeses, red meats.

I had the thought one reason he may not eating is that he’s thinking he should now follow the diet since he’s had the wake-up call – not that he can tell us. It’s possible he needs the cardiologist to give permission to actually eat what they’re giving him! He does seem to eat deserts, but that could be going back to texture or sweetness.

Other than that, the physio said they’re pleased with his progress this week. He's still not talking however.

I'm hoping to spend a bit of time with him tomorrow since I am not working and J will be in child care.  I'll take in some of my cooking and see if that is eaten - it may tell us a bit more about what's going on.

Tuesday, 24 April 2012

A Wet-Weather Play Space

Following on from a successful clean out in February, I had a clear car-port to do something with.

J loves being outside, however with winter coming, we needed somewhere where he could play, but not get wet.  AND have a solutions so he wouldn't run and play in the rain, since the child is obsessed with showers.

What I am hoping to avoid throughout winter...

Grandpa very kindly bought some foam interlocking mats to go on the floor of the car-port -- which J promptly tried to play his swimming game of 'jelly on a plate' .  Doesn't work as well on concrete as it does in a pool.

After I got those down, I brought around his swing/slide set and popped that into the space.  We need some more mats, but over-all, the space seems to work.  And will be better once I get the saleable stuff on the move.

Monday, 23 April 2012

Shouldas, Couldas & Wouldas

There are many dull, boring, somewhat uncomfortable to think about, yet practical and important things I know Mr Trifectagirl and I should have put in place.  Or discussed.  A long time ago.  Just in case something that 'won't happen to me' actually 'does happen to me'. 

Like it did.

Things like having Power of Attorney in place so money issues can be dealt with.  Even though I'm his wife, I can't access his bank account nor change the bank account that social security payments go into.  I can't access that money at all - or stop some automatic payments that will slowly deplete his account.  Not that it's much, but being able to manage these things would be helpful.

Writting and/or updating our wills AND knowing where they are kept.

Knowing our wishes when it comes to organ donation and funerals.  I have no idea what I want for my funeral, let alone what Mr Trifectagirl wants. 

As J is an IVF child and we have additional embryos in storage, making sure posthumous use has been dealt with, or permissions to use in case of being declared not competent to make a decision.

Sunday, 22 April 2012

Playing Funny Buggers

I received a call on Friday from the speech pathologist looking after Mr Trifectagirl. 

He's now onto solid food, but what they call a 'soft' diet, so it's the options that are easily chewable and crusts are cut of sandwiches.  Once he's eating enough, the nasal-gastric tube can be removed.

However he's turning his nose up at much of the food.  The hot meal in particular.   Not that I blame him - his long beans tonight looked a bit grey and soggy.

His mum is in a nursing home and also complains about the food.  I told Mr Trifectagirl he was turning into his mother.  THAT went down well.  Horrible wife, I am.

So I go in to the hospital and have a chat with the speech pathologist to talk about what Mr Trifectagirl likes to eat.   Not much different from what they're serving, but it's probably better when cooked at home.  Also after tonight, I should let them know what he doesn't like, such as pumpkin. 

This chat is occuring in his room, with Mr Trifectagirl listening in.  While chatting with her, I mentioned the concensus amongst friends that Mr Trifectagirl might be playing games with not cooperating with some instructions, rather than it always being a cognitive issue. 

Mr Trifectagirl responded by smiling and turning away.   Yep.  He's been playing funny buggers with the staff. 

At least they know now to tell him off!!

Friday, 20 April 2012

(Attempting) Small Steps Forward

Closing in on the end of the first week in the Stroke Ward and Mr Trifectagirl is doing pretty well. 

When he smiles, his smile is gradually becoming more even on the left and right sides. 

He's now eating baby mush!  Considering with the esophageal stent he may have faced nasal-gastric feeding for life, baby mush is a great step forward.  Even if that's as far as we get, when it comes to food he's thankfully more flavour oriented than texture oriented. 

He sits up in a chair for a while each day, but they have to put a safety belt around him as he keeps trying to get up and walk away.  I think he tries this more when I'm with him than anyone else, so I need to seek information from the staff on that one.

Only problem is, he can undo the belt. 12 months of training with the myriad of baby products with clips and clasps probably comes into play here.  Going by the scowl I got, I was very unpopular for telling the nurses he'd done this, as they promptly put him back into his bed.

There is some concern that cognitive function has been impacted and he doesn't completely understand all the time what is happening/is asked of him.  For example, the doctor asks him to touch his elbow, and he touches his nose.

However, many a person who knows him that gets told this seems to respond with 'is he just being a prick?  It would be within character'.  I need to let the doctor know this as I did have to tell him to behave and cooperate while in the ICU - and he started to.

As stroke rehab is a long, slow process, I'm finding it easier to visit every two days or so, rather than daily.  It lets me see progress and I need that at this stage.  As the hospital staff have always said, he is being looked after, I don't have to worry about that.  What I do have to worry about is looking after myself, so do what I need to do.  It's easier to skip days for me to be able to see progress as I know there are a bunch of friends visiting now and breaking up the monotony for him.

Sunday, 15 April 2012

With Routines

'With routines' is my stock answer to the question of 'how are you coping?'

Mr Trifectagirl has always teased me about my systems and routines - he affectionately calls me Sheldon. 

But they're keeping the household running, cleaning done and healthy food on the table.  Just as they did when Mum was in the ICU.  Plus I'm still working part time and knocking off a few of those pesky 'to dos' as well.  It's just the ironing that's missing out (I HATE ironing!).

The systems need tweaking and refining, but they're keeping us moving forward and we'll find things that work for us now as time progresses.

Besides, what else am I going to do?  I can't loose the plot - it's no good for J, Mr Trifectagirl or myself.

Saturday, 14 April 2012

Moving on up

Literally.  Mr Trifectagirl is going to be moved to the stroke ward, which is on the 7th floor, from the ICU on the 5th.

We're just on bed-block at the moment - waiting for a bed to open up on the stroke ward for him.

The cardiologist has asked the stroke consultant what the recovery chances are.  There's no guarantee, but since he's young, there could be a good chance of regaining lost mobility/movement with rehab. 

But it's going to be a long, long haul.

Been here, done this

Mr Trifectagirl's time in the ICU is my second experience of having a close family member in ICU.

On April 2, 2008 my mother suffered a massive brain aneurysm which put her in the ICU for just over a week. 

Sadly, the damage was too great, and it was agreed to shift her to a ward for care - she didn't need around the clock monitoring. She never regained consciousness and passed away three weeks later.

As such, I think I put just a little bit of pressure on the ICU staff to send me home with a live one this time round.

It looks like we've managed that.

Wednesday, 11 April 2012

Up to speed & and no visiting

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!

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!

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.

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.

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.

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.   

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.