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 dont 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!
Posted on: Wed, 12 Nov 2014 21:36:10 +0000
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