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#2nd Chance for Charles

  • Prep for NCEA

      11 January 2015

    November 20 Update

    Hey Vianney, thats an awesome link kare! And identical to Charles. Thanks for that. NCEA exams started this week. In 3 weeks time, hundreds of year 13 students will be celebrating the end of their days as secondary school students and mourning the loss of being carefree teenagers. Most hope to gain employment, many will hope to head to summer beaches, farewell parties and new years concerts, new beginnings are before them, koutou ngaa akonga o Te Kura Maaori o Porirua, Leesha-Rei Apanui Skelton, Stacie Ft Kawana, Ariana Gillespie, Mererangi Moore, Arizona Karena Tutapu Collins, Kieran Timu-Bristowe, Jahnec Taurima, Tamati Kahukiwa, Kingston Kingi Aporo, Jericho Holland-Tihore, Whaita Mclean, kia manawanui mai kia manawanui atu, whaaia te ara e tika ana ki a koutou kaua ko te huarahi a teetahi atu e kore pea e puawai mai moohou tonu.... Day 42-its been 6 weeks since Charles had his last car ride and six weeks exactly since he was admitted in to the High Dependancy Unit at Waikato Hospital. So. Here we are again back in HDU. It seems more spacious and more alive with life. The nurses are a lot busier than in ICU, due to having to manage 2 patients at once as opposed to one to one care and management. We miss the staff in ICU but are of course stoked to be in HDU as it indicates progress is being made.

    The changes other than the move and new names to remember are many. HDU & ICU share the same doctors so we do get to see some familiar faces. Charles now has a Speech Language Therapist whose main concern is to help him manage the speech passage, in particular the assessment, diagnosis and treatment of the communication and swallow disorder as the result of GBS. Some pretty traumatic stuff has happened physically to his body, the insertion of tubes for breathing and feeding then the tracheotomy - procedures necessary to keep one alive that take minutes to perform and weeks, months to recover from. He is breathing unaided, I will post up pics as well of what this looks like, but still has the trachy in which is capped. He is learning to cough up into his mouth rather than up and into the trach opening and directly out of the throat. Previously he has had to have secretions suctioned buy inserting a thin tube into the trachy and down the windpipe.

    This morning a nutritionist came in to see him. He has lost a considerable amount of weight so they have had to increase his feed amount, they are a little concerned that he is showing signs of dehydration and malnutrition. I have probably only ever seen him skinnier then this once before and then he was undernourished and dehydrated but in a negative way, this current situation is positive, if it can be that at all. As for progress with movement, still weak in terms of muscle control but getting stronger little by little in things like grip, pulling arms in, pushing them out, lifting wrists up, resisting applied pressure on all joints. The hardest part to move is the forearm in a bicep curl movement. Knees are slowly getting movement back but still nothing in the feet or toes..... Getting there.

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  • Harrowing pain

      11 January 2015

    Ko ngaa mihi o te waa ki a koutou katoa e whai nei i ngaa aupiki me ngaa auheke o too koutou whanaunga, too koutou hoa.

    Well..............., another 2 days have gone by here in ICU. For Charles, they have been 2 harrowing days of pain. I do not have the words to describe what or how bad the pain is only to say, I have seen him cry too many times in these past 4 days, he has no sound when he cries, his eyes closed his mouth open, tears running into his ears, his lips quivering as he tries to close his mouth and his face and chest turning red. He told me twice on monday night he just wanted to die. It would be easier. I am glad that I am here. Its little, cause all I can do really is hold his hand and rub his head, but its huge to him. All of you who have been added to or requested by his new fb page are really helping him get through this. All of your messages I read to him and he smiles and tells me a little story about each of you. So, for brief moments in his day, your guys words soothe him and distract him from his own suffering. Thank you all so very much. 4 days ago, it was cruel to put the splints on his legs, he would plead and beg with the nurses and then me, and accuse me of not advocating for him, not saving him as it was excruciatingly painful to put them on. Now, I think the pain is still the same, he has learned to control his reaction to this. He has to wear the splints 2 hrs on 2 hrs off. If he was unable to get through this and manage the pain, he would never walk properly again as all of the ligaments in his calves would all shorten and stay that way for life. Your guys words of love encouragement, strength, ngaa koorero paki, your stories, ngaa maharatanga moona, your memories, ngaa whakaahua, your photo posts, katoa eenei mea e hiki ana i toona wairua e mea ana ki a ia kia pakari, kia kaha, kia whawhai tonu, all of these things that you say and send to him to be strong, to fight hard, lift his spirit and helps him cope. Ko tatou te rongoaa!

    You know, the Drs and the nursing staff here are just so good. The nurses get sooo bummed out when they see him in pain. Their job is to manage the airway. That is what their first priority is, no airway, no life. The doctors diagnose, recommend, re recommend and prescribe, medication, path forward, and sometimes when things don't seem to be having an effect for the patient they ring leaders in their respective field, in Charles case, a leading neurologist in the States who specialises in neuro muscular disorders, to see what the latest is in pain management and or to recommend a course of action specifically for him. End result, his most trusted ICU specialist here, the lady in red my sister Ruiha mentioned in one of her posts spoke to Charles about a couple of options to manage his pain, quite radical, one not invasive the other a bit invasive. This morning she had to go home, been up all night in the ward and she will be back in to see him tomorrow.

    He had a good sleep last night! Soon he will be having plasmapheresis. He so hates this, but, its good for him. Oh oh oh oh oh . He can lift his hands off the bed now and he has more movement in his arms!!! Yussssssss!

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  • Sadder stories here

      11 January 2015

    10 November 2014

    Sorry everyone. I have been slack azz over the past 3 days. Have not really had the energy to write because Charles has been in extreme pain over the weekend and it is starting to get to me seeing him like this. His catheter has been giving him grief. It has been excruciatingly painful to urinate. He has sensations to his legs and to touch his calves is worse then the catheter problem. On Sunday night it was decided to give him medication to sedate him for a couple of days, then restart all of his pain relief because he was inso much pain one compounding the other. I know my sister Ruiha found it difficult this weekend, to see their boy like this. Yes. Charles and his bro have lots of mums, all their aunties. Im not sure about what Ngarangi was thinking but to be here to see this first hand is not good, especially for young people. She saw her cousin writhing in pain, nurses and doctors trying their absolute best to reduce his aches whilst balancing the effects of medication with pains from GBS and keeping him alive. Its so so tricky for them. They meticulously chart everything. Drugs. Pain relief. Food intake. Temperature. Urine and feces excrement. Water intake. Heart rate. Breathing. Lungs, chest and heart. All the lines he has in. Pain management. Sleeping patterns. You name it, the nurses and doctors do it. I have said this before, these people are amazing. Everyone here in ICU actually, the orderlies, the health care assistants are caring people. They do as much as they can to make Charles feel good, which lifts his spirits. So the orderlies and health care assistants know that when it is time to move him it hurts. I see the aroha on their faces for this young man, its moving. They come in sometimes to say hello, ask how hes doing and they always always speak directly to him. I see his wairua stir with their generosity. Such great people.

    On another note. Charles aunty Herani and uncle Bernie came up on Saturday. I thought I was dreaming. So good to see them. Me no cry too on sunday, Karewa koroua, ka aroha hoki, Karewa Sonny Boy, Laurice, Carmen and Keenan all called in. Maan????? Too much whanau from Ngati Toa! Will cherish that. Aunty Maureen and Charles cousins, those two clever twins came in the afternoon. Poor Manaraina. Got lost. Was afraid to come in and see his cousin but then had to caus mum and Marko lost him. Happy that they got to see this chap. Also, on Saturday night we got a visit from Marilyn, a GBS survivor, who lives here in Hamilton, the other side of the lake, and, on Friday, I am going to a christmas lunch at the Okoroire paparakauta, cher, and will meet other survivors and their care givers. I feel a new project coming on....

    So. Today, Monday the 10 th of november. What a day. All pain and no gain. Actually We are beginning to fear for Charlie's mental state. He has made no progress. In fact, today he had a lumbar puncture, he has lines back in his neck and his left thigh. Tomorrow he starts a new round of plasmapheresis. Everyone here is concerned for him. They keep asking, can his friends come and visit him? Does he have many friends? I want to say yes? But I really don' t know. I know he has acquaintances. I also know he has people who care about him in Porirua, the Pa, the Cape, the coast, here, up north, Auckland and Wellington. All of these people have either messaged, texted, FBooked, or been here if they have been able to get here. I also know just how difficult it is and will be for those of you who follow these posts because he is your bro, to get here. Kei te pai e kare ma. Please keep messaging him, i read all your guys stuff out to him even the hearts and stickers and it really does lift him up.

    Sadd here atm. Some sadd sadd stories. How has such a rangatira people become like this? Ours is hard, but not sadd.

    Its 12.48 am.

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  • Lots of pain and tears

      11 January 2015

    7 november...aunty ruiha here adding my weekly post...arrived with niece ngarangi this evening about 7pmish. Na kohu i whaaki mai nga aupiki me nga auheke o te autaia nei. very good to here the rehabilitation team has been to work with some pleasing results. It just takes charles to another level of light...hei ta nga tiipuna "e ua ana ki mao, e mao ana ki ua" it rains until its fine and its fine until it rains...yes, yes, yes, good and bad alternate. Tonight ngarangi and i saw not the rain but what my father calls "he hau hutihuti rimu" the baddest weather that rips the rimu from of the rocks. In the lead up, mother and sun not gelling...mum trying to figure out what son wants, son getn his hoha on(puting it mildly)' ive seen it before but i have my mahi! Im doing a gentle mirimiri on his right foot...toes a no go zone. A few minutes after that the bad weather hits, the rimu is being ripped from his left leg. He is at his max pain relief and no more for another hour. He endures excruciating pain for the next 6-8minutes, he roimata e maturuturu ana i ona kanohi, he kangakanga aa ngutu ka ngahoro mai i tona waha, tee taea hoki te pehea! My sister has the skin of a rhino but how does a mother cope with this? He riri te kai i mua tata, he roimata te hua i muri mai, te mutunga iho! Well its 12.45am, poor ngarangi beside me scratchn away. I dont really want to go but kohu needs a moe, charles has been solid sleepn since his episode...not easy to walk away...i hope he can sleep well, like i say to my kids at nite "ko te po nui, te po roa, te po whakaau i te moe, e moe...

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  • The pool

      11 January 2015

    Today was an ordered rest day as tomorrow was Charles big day out in the pool. So, we spent most of the day hanging out by the windows. Pretty low key and uneventful almost like a calm before a big bang, and Im not referring to the fireworks either. ...

    November 6

    Big bang day. 9 people involved in going with Charles to the therapy pool on the basement level. They changed him into his shorts and we were off. Session was scheduled for 2.30. By now, nerves are beginning to fire everywhere and anywhere in his legs. Where it used to be ok to touch him and massage him on his legs and feet has now become horrendously dicey. Touching moving massaging feeling his legs is by chance and when you are lucky have a very careful go at it. Then it goes. We are at the pool and there are 3 physios in, one out and another operating the hoist. There are 3nurses, a doctor, 2orderlies and me. He loved the pool! Loved being immersed in the warm water. He was able to move his arms and legs ou to the sides and back towards him, not to full extension, but baby steps, and truly at that pace. So awesome half hour, bad bad bad painful evening. More feeling equals worse pain, intense pain, limited pain relief stemming from being maxed out on what he can have..... Here we go.....

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  • Missing the babies

      11 January 2015

    Heoi anoo e kare maa. Koutou e tawhiti atu ana koutou e tata mai ana, teenaa koutou i ngaa mahara nui i o koutou whakaaro rangatira, mana nui ki a maaua, otiraa, ki teenei too koutou hoa, hoa puumau, iraamutu, moko, matua keekee, whanaunga, akonga, taina, (Tawhao) tuakana (Wehi, Te Pairi, Raniera) tungaane ( Vianney, Te Popoki, Te Mahia, Atea, Ngarangi, Kiwa ............ Koutou oona kaihana kootiro tokomaha), ko te ngaakau mahaki teenei e tangi ana i runga i te koa...

    Hello to all. November the 4th. 5days short of one month, 51days to the celebration of the birth of Christ, 58 days to the start of the new year by the Gregorian calendar. The past 2 days have been busy for Charles. Good to see many of you had a look at the pictures we posted with him on the Tilt Table and one of 3 physios. So. Yesterday the team brought up the table. They strapped Charles into it and very carefully manoeuvred him to as upright a position as he would trust. At least 4 times a day he is tested by different doctors and specialists, each doing his/her respective job. He is handled, prodded, touched, he is asked to lift, squeeze, stretch, push, bend, each limb, open wide, close tight his eyes and mouth, move from side to side and up and down his head, and then he is sometimes given statistical percentages like, oh, perhaps 90 or 95% return to former self??????? Like what the hell! I know the doctors are doing their job (and believe me when i say if they did not he may well have not survived) and, that their prognosis is based on scientific, mathematical and medical evidence.

    I saw on the face of this young man, disappointment, gloom, pity, BUT, by the time the physios got there his resolve was to not be that 90% man, AND, he persevered to be the first ever first time patient to get to an angle of 50% on the tilt table. Physio's were stoked! Gave him the mean praise! He kept looking at his feet, he was in awe to see them and he had a feeling of euphoria because he was in an upright position feeling weight in his feet. Great morning yesterday! We went to the windows in the afternoon, it was beautiful. We stayed until after dusk, the sun setting to the west of Pirongia, the skies perfectly coloured shadows settling blue, orange light, red, fading into the landscape quickly becoming illuminated by the whitish to yellow and warm orange lights getting brighter out over Melville. He had a fantastic sleep that night.

    Today, highs and lows. Got to go to the outside rehab garden on Pembroke, wow! He wanted to stay there. Outside, birds, flowers, industrial noise (building the hosp), cars and buses going by, people talking. The garden is very private and on hospital grounds. These are all the things he heard and saw. Aunty Colleen and uncle Eddie came too. Stunning morning. The physio came to see Charles when we got back. Tomorrow he will rest up because he has a big day out on Thursday, he's getting in to the pool!!!! We will put pics up, maybe even a video. Lows??? Yup. Going to catch this one up in the am, its 11.20pm, i think Vivs dad may have lost the key to the room haha, my phone is going and yup, its him. Goodnight.

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  • Aunty Ruiha here again

      11 January 2015

    2 November 2014

    Its sunday morning. The lady in red specialist in yellow today has just finished her round with charles. She is thorough and explicit in all that she does. She is brutally honest with charles in every detail. She said he is allowed to have his off days and say stop no more and thats fine...but... some days she will push him even if he says stop. Turning is painful..but this is also an indication that he is making progress. She said if we let you lay in bed you will die of neglect because we haven't done our part'. In no uncertain terms she says rehabilitation will be tough and she will push him and he will likely break many times but it is the only path forward to healing. As Maori we know that in order to help heal and mend a broken body a persons wairua and hinengaro must also be in alignment. I reiterate again this is his ultimate long distance marathon. Our challenge as whanau is to be here and not judge and we are often our worst enemy. I would like to think we have some idea of healing the way our tipuna did it. When i am here on my shift in weekends i come with one focus...to mirimiri. I do this about 4-5times a day. We, kohu and i(aunty ruiha) were here about midnight...she said to charles il stay but aunty ruiha might go and have a moe. I said 'what...i didn't come here to sleep...anyway i would never here the end of it'. So did a midnite sesh with charles on his legs which is my main focus as this is the area that takes the longest to come back...when charles sees me coming i can read his eyes saying mirimiri aunty...so on that note i better get on with the morning session. Aunty Ruiha.

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  • The passing of Luke Tipene

      11 January 2015

    November 1 today. Its been pretty challenging. We've been at the window most of the afternoon. Nice and quiet down here. No bustling nurses or doctors, no distractions, no other patients. We look out the window. The sky is clear, the sun is starting to head towards the horizon on the west. Can see Pirongia, we think and Maungatautari, okay I googled the landscape :). I have been up and down in the past couple of hours scratching parts of Charles's face. While he gets relief from this, you can tell that he absolutely hates it. I am constantly asking myself, I wonder what he's thinking about? Most of the time I don't know what to say so we create 'small talk', a couple of stories today, both about young men, one currently in Middlemore hospital, Corey Sands, possibly paralysed, sent him a message, and the saddest of all, the passing of young Luke Tipene, he moumou teenei. For a moment, it gives Charles a break from his own reality, and in a way it reinforces just how lucky he is, he is still here, he has unbelievable and unconditional love and support, we know he is going to recover from this, as much as we see his struggle every hour of every day, we are lucky to also see his progress even though it is small. We have just come back to the ward. There are 7 cubicles here. Right now there are only 2 in use, Charles and an elderly lady 2spaces over. The reality of GBS in these past 3weeks is, in ICU, people have come and gone and, gone, and Charles? Well, he has just stayed. More will come and go and go, and he will still be here. With the passing of each day, we have renewed hope. With the passing of each day I see hope less. This is and will indeed be a fight for life for this young man, one he must be ready for... I runga anoo i teenei, kei te whaanau Tipene e taawharau ana i te kahu o te mate, e tangi hotuhotu ana te ngaakau i te mate taurekareka nei! Ko te aroha ki a koutou me to taatou taonga e whakarite ana i toona hokinga ki paamamao, ki tawhiti ki oona tuupuna maatua. E tama, moe mai ra!

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  • Bad night, good day

      11 January 2015

    It 9.30pm. Charles has had a pretty good day after a not so good night. He slept from 1.30 to about 5.30 am this morning. Was a little anxious earlier because he was having the last of the plasmapheresis treatments and although this has been helping him it has also been giving him some pretty yucky side effects that he has been sensing but unable to explain, again, due to the paralysis caused by GBS. The blood transfusion technician has figured out that to counteract the nausea, the chill that comes over him and the pain he is experiencing, they would give him calcium to offset the effects. Result was pretty positive and it was a smooth last treatment. Doctors and specialists have been in agin to do more testing. So today he has had 3 doctors, the senior registrar, the specialist from the neuro team and the intensive care specialist come in to check the nerves and the paralysis state for improvements. Small small gains of strength in his fingers, grip, shoulder strength, but to us huge gains. Still no wriggling toes but he will get there. He constantly needs his trache suctioned, his eyes wiped, he has been a little teary eyed here and there and a little bit annoyed at mum, me, because i have'nt been able to understand some of what hes been saying and when i do get it, the time has lapsed. Never mind my son, im getting better at lip reading :) To get the nurses or actually anyones attention, he clicks his tongue, hes become really good at using his eyes to tell his whanau to get out of the way of the nurses and doctors when they need access to him so although he is physically weakened he is sharp in his mind. I am amazed at his ability to communicate with nurses, specialists, doctors and technicians without speech or movement to let them know how he is feeling and what he is thinking, testament in the way these people address and respond to him directly. Being witness to his regrowth is truely amazing. He shares his thoughts quietly with his carers. He is ever thoughtful of the work they do and the support he has from them. He knows they are like each and every one of you, key to his triumph over GBS. He is not alone on this journey.

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  • 1am, high temp

      11 January 2015

    It's 1am in the morning, Friday, October 31. I told myself a while ago, I would never be one of those people that puts their life story on fb, lol, every single one of you, who have sent and continue to send your messages of love, faith, strength, and awesomeness to us and your mate, your nephew, your son, your brother, your uncle, your cousin and your friend, know that because of your love, I bare all. For the past 3 hours I have been with Charles trying to keep his temp down, (spiked to 39.1) by putting cool flannels on his forehead, behind his neck, behind his back, on both shoulders. He had asked me earlier to come back and stay a while because he did not want to be hoha to the nursing staff ... Just typical this kid, putting the perceived(by him) needs of these fantastic carers before his own, grazy fing! I'm waiting for him to drop into deep sleep mode then i'll leave. Now, do not feel sorry me buddys, i am a bit of a night owl, those kura kids doing :) lol and I like to write. I have been keeping occupied by marking essays, and reading the kids work via Google Chrome, neat alright! Watching the news, reading uncle Bill's wonderful book on Te Maramataka hei taa Te Whanau a Apanui. E pupuu ana ngaa whakaaro ki te waa i a Mere Reweti maa, ki te waa hoki ki a Alexis Rangiatea maa, me te maatauranga e huna tonu ana, e tatari ake ana kia hauhake mai hei maara ki ngaa whakatupuranga kei te heke mai! TBC MOE

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  • 30 October 2014

      11 January 2015

    Today is the 30 of October. Charles has been in hospital now for 3weeks. In this time and as you will all already know he has been in ICU on a ventilator breathing through a trache for all of the time he has been in here. Today, he has had one hour breathing on his own, which is WOW! He gets another try at doing this this evening which will be awesome and is all part of his rehabilitation. So for everyone thats new to this Guillain Barre syndrome like me, for the sufferer, its not like there is a medicine that can fix you up quick. Recovery takes weeks, maybe months or years depending on the severity of disease and of course, the determination of the person with the infliction. Charles is making small steps. Movement in most fingers on his left hand and some fingers on his right. Some sensation in parts of his legs but not yet wiggling toes. Can shrug his shoulders but cannot lift either hand or arm off the bed. Can close his eyes now and can see a lot clearer. He endures long days where he is unable to do anything for himself. Things you and I take for granted like, breathing, reflex movements to scratch anywhere, eating and drinking, shifting parts of your body when you've been standing or sitting or lying in the same spot, he needs help to do because GB causes a debilitating paralysis everywhere. He is on a number of pain killers, he's been on a course of antibiotics, he has creams for eczema, he has lost all muscle mass, happens when you are in bed like this and doesn't take long to lose, BUT, he looks clean and new. His skin looks great. The nursing staff here in ICU are second to no one. They care over and above the normal duties they are paid to do, and the doctors are fantastic. Everyone involved with him only wants to help him get better. Could not ask for more.

    He has his good moments and he has not so good moments. Those of you who are his mates, his cousins, his aunts, his uncles, his nieces and nephews, his acquaintances and his yet to meet friends, and his whaanau, take comfort In knowing that your well wishes, your messages, your phone calls, your visits are all playing the best part possible in helping him mend and heal.

    Thank you all so very much, aroha nui!

    Kohu

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  • Aunty again

      11 January 2015

    Day 16 in ICU. Charlez aunty Rui hea. Well...i thought i might be sending this message a week or two from now when charles would have his first finger or toes move. The team of doctors doing their morena rounds got to charles cubicle. He was 40minutes into a plasmapheresis - take blood out, separate into plasma and blood, replace plasma with plasma substitute then put back into body - an hour and half treatment. Anyway back to the doctors, theee doctor, lady in red...you know how we have the no makarauna old ladies in te ao maori...well she commanded everyones presence just with her look...then she spoke...charles was like the bestest soldier, she commanded him and boy he was determined to obey..."lift these fingers for me... Lift those fingers...move your foot...move the other foot" . The combination of the two was wicked...specialist and patient, both resolute. The expression on charles face was a thousand suns... I think the rest of us watched in awe of the two. People, today the first major mini milestone was met...he could move fingers in both arms altogether a little up and down, left stronger than right. He couldnt wiggle toes but could push both feet. Because his nerves are slowly returning Doctor lady n red said it will be painful as the feeling starts to return. So this is now the rehabilitation phase. Doctor said they will put him through his paces tomorrow...yes he gonna be working each day now. Ina te tauwhirotanga a te hunga morimori i a ia!

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  • Aunty Ruiha here

      11 January 2015

    Nga manahau ki nga hoa me nga tini whanaunga te aroha i a koutou ki taku iramutu kaingakau. A big thanks to all friends and whanaunga who send your aroha to my cherished nephew. I am his aunty rui(ruiha ruwhiu) and wanted to give you all a snapshot of life here. Today is day 15 in ICU. A sleepless nite and stressful morning for hare. The feeding tube was blocked so he needed it replaced, a very uncomfortable procedure, but lucky they could put him to sleep and do it. Waking off course to discomfort. So thats a down. The type of illness he has (guillain barre syndrome) leaves him in a state of profound muscular paralysis. For charles/hare this is the endurance marathon of his life and tests him mentally every minute of every hour of every day of every week for many months to come. The doctors said yesterday that by this time 90% of patients have lost the plot. Coming to terms with the fact that progress will b slow, recovery and rehabilitation will be a lengthy and even greater mental challenge is something not only he has to deal with but his family and friends as well. He could wiggle his toes next week or three weeks from now. Its a waiting game, a matter of time. A tiny sign like this is what hez waitn for and would give him his first taste of a big tiny sign of progress, a milestone even if it is only one inch. On days past he has his sense of humour, of course he can only mime and use his eyes to comunicate. Icu here in waikato has an xcelnt team of nurses doctors specialists and turners, couldnt ask for better care. I think he enjoyed seeing some aunties today, our first cousins and one of his second cousins. Time to go hez tryn to communicate something to his mum and she not getn it so before she loses the plot i gota go. Next post here will be wen the first toe or finger muvs

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  • Next day, new treatment

      11 January 2015

    E hika maa, e kare maa e hoa maa, kei ngaa tini whanaunga, e mihi kau ana ki a koutou i o koutou whakaaro rangatira kua horahia mai ki runga ki to koutou tama, hoa, whanaunga e noho taumaha ana ki te hohipera nei i teenei waa. E kore e warewaretia.

    Not alot to report today much the same as yesterday and the day before and the day before that. Charles is having a different form of treatment which started on Monday called plasmapheresis, simply, the blood is taken out of him, not all at once though, separated into cells and plasma, his bad plasma is then replaced with a plasma substitute and then returned to his body, all done by a machine and the blood lady yesterday, Sue, told us it works similar to dialysis machine. Yesterday he had the second of 5 for this round, tomorrow will be the 3rd, then Sunday and Tuesday.

    Thank you all for your messages of support and love, it means alot

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  • Trachey in

      11 January 2015

    Wednesday 15 October

    Today at 12.30 Charles is having a tracheotomy so he can have the breathing tube in his mouth removed and re positioned to be put into his neck. He will be happy with this.

    On the rounds this morning the neuro team have found that he has become weaker. Where he was at a 3 to 4 strength on Sunday in things like grip, resisting, push, flexing joints etc he is now at 0, 1 & 2. This is expected as the disease gets worse before it settles and then starts to improve. When he came in on Thursday he was given a treatment where he gets given antibodies to take over the antibodies that have taken his nervous system over, they call it Immunoglobulin. This takes some time to work, hopefully by the end of the week we will know. I kind of felt sorry for main neurologist, he would fail as a judge in Australia's My Kitchen Rules... lol you can see his thoughts all over his face.

    The doctor doing the trach.op explained everything to me and she was bloody straight up the guts, talked about all the risks involved especially with the breathing. The worst scenario was that he would not survive the op. 12.30 came and went, I went to town to eat sushi and buy a hand held blender.

    I went back up to see him at 3pm and he was pretty heavily sedated and still under but his bloody sharp ears could hear me aye. He seems much better now that the tube is out of his mouth, but the re positioning of the tube will take some getting used to. As he was coming round he was struggling to breath and the nurse had to get some of the fluid out of the breathing tube. Nurses. you can't be a panicker, you have to just relax, gosh....

    It is almost 6pm, they will be gearing up to do his turns on the even hour... Aunty Gina just phoned, I can now say I am in the rehab club... but I will advise the team here that Charles is not to be sent to Kene for rehab as Pehi is enough for both of them :) lol aunty Gina

    I am good. 6pm lib closing

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  • Letting everyone know

      11 January 2015
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    Huri te ao, huri te poo, kei aku tini whanaunga, kei aku hoa kaimahi, kei ngaa maataawaka e tau nei teenaa koutou katoa.

    Charles, my eldest son, was admitted to Whakatane hospital on Wednesday evening last week. He was suffering from weakness in the extremities and numbness and tingling in his hands and fingers. Overnight stay in Whakatane where it was decided to send him on the Waikato Hospital as they had suspicions he might have Guillain Barre syndrome. He was moved to Waikato hospital and arrived on Thursday afternoon and was admitted to the High Dependency unit right next to ICU. If you read the brief on this disease, he has been suffering and experiencing the deterioration of the use of his limbs, extreme weakness in the arms, no movement in his legs but a slight wiggle of some toes.

    I arrived on Sunday morning to Waikato. At that time he could talk to me and the disease was in its early stages. By Monday midday he could not talk and was experiencing difficulty with his breathing. I am glad that I had looked at what the disease does and how it moves otherwise I think I would now be a wreck.

    He was admitted to ICU almost immediately. I was told that with this disease there is a fine line between admitting too early and too late, so his carers, doctors and the neurologist really had to time it right before sending him to ICU. Here he has been put on life support, to support his respiratory system, his breathing. He has been given lots of pain relief, some of which causes nausea which in turn has made him vomit frequently. They will gradually wean him off so he learns to breath on his own and so he starts to be more himself not all pain reliefed up.

    He cannot talk, he has the breathing tube in his mouth to his lungs, a feeding tube in his nose to get nutrition in to him, an IV line in his neck, a catheter and lines into his hand for bloods.

    He has the top neurologist in the hospital looking after him and 2-3 doctors who are part of the neurology team, they do all of the strength testing with him each morning. He also has a great team of nurses looking after him. The orderlies turn him every even hour and whanau are asked to leave while they do that. Yesterday his hands were put into splints to help with extending his fingers trying to get full motion with the extremities. These are removed every two hours as well. \he may soon need leg splints for his ankles and toes

    As well as this really awesome team of professionals looking after him he has a physio that comes in to see him and has also had the dermatologist give his nurses cream for skin irritations like eczema.

    I have asked Vianney to post this to my fb page and will be sending her email updates for those of you who we know want to know how this boy is doing. Me mihi ka tika ki a koutou e tuku ana i aroha, e tuku ana i te whakaaro nui ki a maaua.

    Huge huge huge apologies to my whaanau, here in Hamilton up in Auckland and North, and back home up the coast for not letting you know. Charles didnt want anyone but me and sisters and bros to know, but now I just can't keep any longer and its ok with him to say something.

    Apart from a horrible rash that I have, muz be strezzzzzz, I am good. Im at Hilda Ross House right at the Hospital.

    On a lighter note. My son and me, we clash, big time, so, it has been pretty frustrating for him, he who cannot speak and hardly move to try to mimic with his mouth and signal with his eyes that he needs things, moved because he is hot, what is the time, stretch my feet, turn me - not allowed to do that, pain relief please, gosh, he gets so hoha and rolls his eyes and just shrugs his shoulders. me and the nurse eventually get it. Ok, I have to go back to the ward now but will keep you all updated... ngaa manaakitanga ki runga ki a koutou katoa...

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