Two nights at home

Hello again,
My apologies for not posting yesterday... I always seemed to be in someones arms in some room of the house, right up till bedtime!
We have been home for two nights now and life seems strangely surreal. Sometimes I not sure if I am dreaming and will wake up soon, or if everything before was a dream, and that we have never even been to hospital... but I guess that is the reality of grief.... We are for all intense purposes, unstable!

Visitors, friends and whanau have come and gone, some staying minutes, others hours.  They all leave a little piece of themselves. Logan lies in peace in his room, whilst in the lounge, flowers, candles and other memorabilia adorn our dining table in the lounge.  A notice went into the papers today... I think we asked for Waikato Times and the Herald, but it's all a bit of a blur.

By some form of magic, our fridge and pantry have filled themselves, and our home is constantly being cleaned. We are blessed with the best friends.

Logan's Remembrance Service will be held on Saturday 19/11/11 at 1pm in Knighton Normal School Hall. Followed by his burial at 3pm at Newstead.


Logan did not want people being somber and crying around him.  So in true Logan style....


- Please wear bright clothing
- If you have a t-shirt with a funny slogan please wear it
- And/or ...If you have a flannel shirt, you can wear that!
- Jeans are more than OK!


Could you please bring a plate of food to share, for refreshments, these will be held in the staffroom, until after the remembrance.


Coffe, tea, and cold drinks, will be provided.


DONOT, bring any food or drink into the hall whilst Logan is in there out of respect to the family.


Once Logan leaves, a blessing will be said over the hall, and on our return, another said to bless our family, before we re-enter the building.


The service will not have any religious moments apart from this as per Logan's wishes.


We would love everyone to come back to the hall after the burial to help us to continue to remember him...


In lieu of flowers, as per Logan's wishes, a donation can be left at the service for Ronald McDonald House.  He had planned to go back to do fund-raising for them.


Logan will continue to stay home with us until Saturday.  Before the service, family will take him for a drive around his favourite spots, and then bring him to his Knighton.  Please feel free to come by at any time and visit him, and/or share a meal with us.  You are always welcome in our home.

We are home....

This evening we arrived home... Logan will be joining us tomorrow afternoon. We have decided to have his remembrance on Saturday... details will follow. Rosemary had the honour of accompanying him home...

I was so proud to be with our son at the end, along with Evan, Charlee, Tania and Rose.... He was strong till the end.  We miss him deeply and are grateful that we can have him at home for a few days until Saturday.

We will keep you posted on upcoming events. The last post of this blog will be this Sunday.... and as per Logan's wishes, we will publish it into a book.  Not sure how, but apparently it is an option with this service.

Thanks so much to all, for your love, kind thoughts, and condolences.

You are welcome to visit Logan at home at any time... he will be honoured to have you care.

Evan, Tracy, Brad and Charlotte.

The road home

This morning, Logan's breathing slowed, his pulse dropped, and he relaxed.
At 8.12am, all the pain stopped.
He's now watching over us all from heaven.
He will be in our hearts forever.
You were the best little brother a sister could ever ask for.
I love you always and you will never be far from my thoughts.
Your little big sister xoxoxo
Charlie

Time begins to race...

Why is it that when you want time to slow down... it speeds up! The time is 1.15am and it is my shift to stay up with Logan.  We have decided that he will not be alone any more, and this means one person awake at all times.  An incident this evening made this even more important... 

For some unusual reason, Evan and I were still awake at 11.30ish.  Rosemary, Tania, and Charlotte, had all headed down to RMcD house for the night.  To be perfectly honest, I'm not sure how it all started... maybe Logan's breathing was heavier, or his movements a little strange... I'm not certain, but something wasn't right.

We insisted on the doctor being called.  Within five minutes, Logan had lost his speech, and all movement and feeling on his right hand side.  He was groaning and grunting and we feared the worst.  We sent for the others and held on as best we could.  Logan kept pointing toward the window and groaning.  We thought he was asking for Rosie, but we could not pacify him.  Finally, I took a good look in that direction, and realised he was asking for his drink bottle...

The nurses were reluctant to let him drink, but I thought damn it... If he was going to go, he was going to go out in style... so I let him drink.  I tried to get him to take it slow, but his left hand was strong and kept pulling the bottle back.  

Tania arrived with Charlee and Rose in tow.  We all gathered around as the docs poked and prodded.  Ward nurses came and went.  Tears ebbed and flowed.  After a while, I called a halt to the tears and said enough was enough. Logan doesn't approve of tears and there would not be any.

A short time after that, Logan grunted something to me... then he repeated it. Charlotte removed his mask so we could hear him better... he said "you didn't give me enough drink".  He was back! Things improved from there.  His feeling came back bit by bit, till he regained it all.  His breathing is still very bad, with fluid build up not shifting no matter what they do.

The doctor said one of two things may of happened. Either he had a bleed on the brain... which is possible as his red cells were down, and so were his platelets, or his tumour on the brain is affecting nerves.  Apparently elderly people can have these 'episodes' which correct themselves all the time. 

The only treatment they can give for his breathing is morphine, which will relax him so that he doesn't worry so much about trying to catch his breath all the time... I didn't even consider this could be an issue... fighting for breath... 

I look at him, trying hard to sleep, but probably afraid to.  He did ask the doctor if it was safe to sleep... I promised him then that one of us would stay up with him at all times. The doctor said that sleep could  only help... I hope so. 

Tomorrow we had planned a trip outside with him, in his bed, to the domain.  It seems like every time I plan something, it falls flat! I don't want it to end here... We have been in contact with people in the hospital at Waikato and they are going to call people up here, to see if they can arrange the transfer.  I spoke to Logan today, and he said that he will stay in Auckland, if the journey home could shorten his life. So we will be guided by his wishes.

A thank you goes out to Uncle Dean, who popped in for a visit earlier this evening, even though he couldn't stay for long. Logan tired too quickly and kicked his uncle out! No offence was taken, and Uncle Dean promised to stop by for another visit soon. 

Logan has been flooded with texts and posts on my fb from people who send their love and expressions of anger and sadness at his situation.  He had received many requests for permission to visit... he is happy to see people, but only for short periods. He tires too quickly even without talking now. Please let us know if you are coming, so that we don't over load on one day... We don't want to have to turn anyone away...

As I look around the room, at 2am, I see Evan laying on the fold down bed, pretending to sleep, Charlee sits/lays in a typical, red waiting room chair, whilst also leaning against Logan's bed.  Logan looks the most peaceful that he has all night. He has given himself several bolus of morphine to help settle his breathing... spoke too soon.  Just woke up mumbling... and when I questioned him he said he thought we had visitors from Canteen.  This is the morphine doing it's thing... he often sees or hears stuff that he calls his other reality... funny for us, but frustrating for him.

The other issue for Logan is a persistent cough that he has.  It is not an infection, but rather a collection of fluid in his chest.  This gets quite intense at times, making breathing even harder.  Periods without coughing are worth gold... he is so exhausted that he needs all the rest he can get.

I need to give him his insulin now so had better sign off... 

Bless you all,

TTFN

Tracy

p.s. sorry for the grammar and spelling mistakes... I is a bit tired!

A request from Logan...

Please do not put this information on facebook... you are welcome to put comments on the blog, send text to Logan, Evan, Charlotte or myself, or other ways. But Logan does not want strangers writing comments about him, who randomly search fb....

Thanks for that.
Tracy

Another leg in the journey

My apologies for the delay in posting...

It all began last week, when Logan started requesting private meetings (you will remember), with Nyree, his transplant lady... Since then, a visit to PICU, and then a jump back to the positive.  Then Logan began to develop blurred vision, most noticeably after the PICU visit... The opthalmologist saw nothing wrong with his eyes, except that he has glaucoma in his weird one.

The 11/11/11... a number which will stay forever in our minds...

The doc tells us that Logan's lungs are worse, as are his kidneys and his liver. He has fluid filling his belly, and around his lung. And lastly, there is an abnormality in the brain... noticed when he went for a scan that morning. Infection and fluid retention were ruled out, leaving the only other cause... the lymphoma is back.  It is also back in his mouth, which is what Logan had reported to Nyree during his private meetings.

In true Logan style he had been keeping this a secret from us, not wanting to bother us, not wanting to see us sad.

Initially, yesterday, Logan was told to set some goals... which he said were to eat food, and return home, to the Waikato, and if possible to his own bed.

Today, things have again changed. Logan's condition has deteriorated.  The doc has said that unless there is a drastic improvement, going home is no longer an option.

Throughout the last few days, Logan has been philosophical about it all. On the 11/11, he requested we tell no-one, and asked that Charlee, Evan and I sleep over in his room.  On 12/11 (Rosie's birthday), family was told.  Today, he waited for his best friend to get home from a surfing adventure to give her the sad news. She was top of his list, and he did not want her to hear from anyone else... He refused to tell her yesterday when he wanted to, as he wanted her to enjoy her birthday.

I have now been given permission to share this sad and devastating news on the blog... we were thinking of stopping the blog, but then realised, that this is just another part of his journey, and to stop now, would be to deny the reality.  As Logan says, no-one said life would be fair, just that it would be worth it.

It breaks our hearts that we cannot return with Logan to the place that he has always called home, and to the place that loves him, to have one last look at the river, and smell the cow poo!... we are not giving up hope entirely that he will recover enough to be transported, but the chances are slim.

When I can, I will continue to post so that you can finish his journey with him.  He will never be alone.  Today he is very tired.  He has moved back onto the morphine to control a persistent backache that is frustrating him. Occasionally the morphine gives him hallucinations, but he is relaxed about it, and accepting them for what they are.  He is spending a lot of time making lists in his head, which he is never quite ready to share... the time will come when he is ready...

The time we have left is unknown, but we are hoping for lots, and realising it may be less...

Thanks so much to you all, for your love and support, your meals and snacks, your petrol and grocery vouchers, and your time... more precious than anything else...

Rosetarded and Charlee... amusing Logan

a snuggle with sis

a snuggle with Rosie Posie

Logan moved onto oxygen before his adventure at PICU

Logan in PICU... spaceage...

A beautiful hndpainted card from a darling friend

Logan's entire left hand was bruised in PICU

Evan and I at Logan's sleepover

Logan and Mummy

As he struggles to breath, Logan moves onto humidified air

Until we talk again
TTFN

Tracy and Evan and family

Transplant Day +31 - a time to reflect...

Looking back over the last 24hrs, they feel as though they happened to someone else... certainly not us. We should be nervous wrecks, but we are not, and there seems to be no rhyme or reason for our calmness... afterall, last night, or son was unconscious and in kidney failure and renal distress...

But from the beginning.
Yesterday evening, Logan was asleep.  He had been talking and groaning in his sleep, and although I was concerned, the nurses assured me that he was just dreaming... afterall... his BP, pulse and temp were fine.  Though his pulse rate was lower than its usual 125bpm, that was not a bad thing.

Things changed at the speed of light when his regular blood sugar was taken and a glucose reading of 0.6 was discovered! He was not sleep talking... he was unconscious and slipping into a diabetic coma!

In my usual bossy way, I ordered the nurse to grab his glucagon injection, which was beside the bed, draw it up and stab him in the leg! She did this whilst the other nurse left the room, and unbeknownst to me, called a 'code'.  This is done by dialling a phone number, which results in a million people landing on our doorstep simultaneously, bringing doctors, nurses, specialists and a crash cart!

I stayed at Logan's head the whole time, taking blood sugars, talking to him, gently slapping his face and basically doing anything I could to encourage him to speak with me.  He later told me that he had no memory of this, and that when he did come around, it was slowly, as if from an anaesthetic. I was later told by a doctor, in ICU, that they thought I was a nurse until they saw me at his bedside down there. LOL. I'm obviously a fabulous actor.  Evan was the sensible one and stepped to the back of the room to let them do their work... I've never been one to make good choices!

Eventually, much to everyone's delight, Logan started to answer my questions with some clarity.  Which resulted in me yelling out "he's back!" like some idgit! Unfortunately, the levels did not remain stable and he required several bolus (you should know what that means by now), of sugar.

The irony of the situation is that once he was conscious and his bloods were acceptable (not ass-septible), they all walked out and left the three of us on our own... two of us shaky and slightly shell-shocked.  Eventually the Ward Manager, Natalie, came and introduced herself and said that she felt it would be too much for her staff to care for Logan, at least in the short term, as he had more needs than she felt it was fair for them to manage, and said that their was a high likely-hood, of him being moved to PICU.

This was not too much of a shock, as the liver people had already suggested it might happen, but it was the conditions under which it was being implemented that made us a little shaky. So whilst they considered this, Evan and I took the smart option and prepared for the possibility, which was just as well, as they gave us no warning and just came to take him.

The room was left for us, with all our stuff in it, just missing us, the bed, and a small backpack of gear.  Arriving at PICU was not as scary as I thought it would be.  I have been to ICU and HDU in Waikato, and was picturing something along those lines, but had forgotten that we were talking about the children's ward.  PICU (Paediatric Intensive Care Unit) contains the HDU (High Dependency Unit) as well, which is techincally where Logan was. But he had his own nurse (often three actually) and his own private room, so it felt more like ICU.  The difference, I suppose, is that ICU patients are usually on breathing machines or unconscious.

Handover from our nurse to theirs was interesting to behold.  They obviously have their way of doing things and Logan's poor nurse got it in the neck from an old girl who has little respect for pretty young oncology nurses (even intelligent ones).  Logan had initially not been to fussed about going down, but that was to change.  Life in PICU is far different to that on the ward.  We may have had a 'private' nurse in our room, but the fun ended there.  Lights on around the clock made it impossible for Logan to sleep (without willingly going back unconscious!).  The nurses talked loud and long with each other and the doctor on the ward, in the room.  They were unused to have patients that were awake and Logan was exhausted and becoming grumpy.  To top it all off, his blood sugar level would not stabilise and they had to keep giving bags of sugar.  The grumpy nurse (previously mentioned) suggested at one point that their blood gas machine reading were correct and that mine, from our little machine, were incorrect, when it came to reading his glucose level.  By now I was skilled in recognising Logan with a low blood sugar and I challenged her to a test off with our manual machines.  Turns out, hers reads one point high, and mine, one point low... their fancy blood gas machine was totally wrong and needed recalibrating.  They nearly lost him to another hypo! In amongst all this, Logan was continuing to have all his meds, and two hourly ventolin via an oxygen mask over a five minute period... exhausting.

Eventually he drifted off to sleep despite their ministries and with that, Evan went back to the ward to get some shut eye.  I managed to remain awake until 4am when my body could no longer keep its eyes open.  I had been told earlier that I was allowed to sit with Logan, but if I got tired I was to leave the ward as sleeping parents were not allowed there.  Just as I was arranging to swap with Evan, another nice nurse said not to worry and gave me a blanket.  I slept through till 7.30am on a chair...

At 7.45, two of our ward nurses came down to see Logan.  It was lovely to see them.  They are really part of our family now.  Strange to say that when we found it so hard to fit in here in the beginning.  I suppose Auckland isn't so bad if you don't have to go outside and hang out with Aucklanders! LOL!

Sometime after this the doc came and said that they had stabilised him and that at some point that day we could return to the ward.  She said, that in a nutshell, Logan had been in kidney failure, but had responded exceptionally well to the treatment, which was the reason we could go back upstairs.

At 9am, we were told we were allowed back on the ward. YIPPEE! But it took till 12noon to get there... and on arrival, we were greeted by staff and Aunty Sue... Charlotte arrive shortly after.  Logan was too tired to socialise, but we talked quietly together.

One of his doctors arrived in the early afternoon and gave us the following information:

• Logan has lots of fluid on board - he has gained 4kg in 24 hrs
• He has lost 50% vision in his right eye.  She thinks he may have a bleed there and is going to contact the eye people.  She feels this will correct itself
• They are not able to use meds to make him pee, due to his potassium level, so they are not replacing the fluids that he expels (urine, poo and vomit)
• They are restarting his TPN (total parental nutrition) tonight.  It will have a higher glucose concentrate and less quantity
• At this stage they are still giving platelets twice daily
• He is having a red cell transfusion today also
• Chest - fluid between the chest wall and the gut - if it gets harder for him to breathe, or his oxygen stats go down, then they will consult with a surgeon about the possibility of draining it
• Albium level in the blood is good, will give more though and hopefully it will draw the fluid away from the gut and the lungs
• Kidney and renal function now much better and heading toward getting back on track... not perfect though by a long shot
• Potassium level now stable, but will be easily messed up again if we give the wee meds
• No insulin at the moment, but when they start the TPN, may need to begin again
• Yesterday Logan crashed because they did not give enough sugar to counteract the insulin... which was needed to counteract the potassium.... (took lots to get that admission)
• Bilirubin stable, if high, and will continue with defibritide medication
• GVHD - not change - still severe diarrhea - continue meds on at present
• Have to seriously watch for dehydration as not replacing fluids now
• They are going to take out the IV that was put in up here yesterday, but blown out down there
• The meds that Logan is on have damaged his kidneys... this is going to take a long time to repair
• They are going to reduce the dose of cyclosporan, which is the drug they give to suppress his immune system, as it is damaging his kidneys! 

Hells bells!

Ok, am definitely exhausted now... not the young person I used to be, able to last on three hours sleep.

Lastly, just spoke to one of our nurses from last night who help bring Logan around.  She was full of praise for Evan and I, for the way that we handled the crisis.  I explained that he was pink and breathing and therefore we could cope.  Anything more dramatic might challenge our abilities!

Thanks to all for your love and support and texts well into the night... 

We have a pile of mail here, but have not opened it yet so will say thanks for that tomorrow.

TTFN

and keep smiling

Tracy, Evan and family