Accepting/Coping With Deterioration
| Posted: February 3rd 2010 | |
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Tina_EvesMum |
Print Eve is deffinitely deteriorating markedly. She is sleeping a lot more and even when awake she is barely able to find the energy to open her eyes, and so sits in her chair looking like she is asleep and then you see a smile and realise she is listening to the conversation. She loves to Tease Uncle Fred at Church on a Sunday morning and he will come and stroke her cheek and say Oh Eve is asleep and she will chuckle and open her eyes to smile at him. But these days her smile and open eyes are brief. Over the last two weeks we have had two episodes of prolonged apnoea that have not responded normally for her and afterwards she has not returned to normal behaviour for a little while. After the second time, in Church on Sunday she was really twitchy for about 20 minutes afterwards. I really think these are siezure like events if not actually true seizures. This is possibly a progression of Leighs and we should accept it....but how do you? I am concerned that I really do not know when to be concerned enough to take her to hospital or seek advice. Often when we go into hospital the Doctor says, OK we will watch and wait....what I need to know is what we are waiting for...I can watch and wait at home, but I need to know what I am waiting for. We ended up on the ward yesterday, Eve is having great difficulty dealing with her secretions and needing a lot of suction to keep her airway clear. She is also having episodes of very raised heart rate, 140-160 bpm is reasonably normal for her these days but over the weekend we saw it consistantly over 170 and peaking at 196 on Sunday afternoon. Also the secretions which had been clear were turning creamy so I wanted to rule out a chest infection. We came home after 5 hours with Antibiotics. We also have a neurology appointment on Friday. Currently Eve is sleeping 70% of the time, and is still able to smile at us/the cats/the telly when she does wake. No real point to this post other than to seek others thoughts and offload my fears and anxieties where there is an understanding. I am sorry that the SPAM is sometimes sitting around for a day or so before I get to remove it. I just havent had the time to sit and deal with it properly. It makes me quite sad to think that so many of us are dealing with such horrid situations and people think it is OK to post rubbish on the site! Sorry, Venting over Love and hugs C __________________
Tina Mum of 5 children Eve has just been given a suspected diagnosis of Mitochondrial Cytopathy. I do not know what the future holds but I am glad I know who holds the future! |
Tina, I wish a had some
Submitted by arktjk on Thu, 02/04/2010 - 12:51pm.
Tina, I wish a had some advice or words of wisdom to offer, but I don't. We went through a very similar situation with our daughter Abby (she had MELAS and probably a bit of Leigh's-like because of how badly her brain was affected). She deteriorated over a 6 month period with similar symptoms as Eve. We were in and out of hospitals frequently the last 6 months. When I reread my journal, I wrote about her deterioration, but in real life I was not going to accept that it was going to lead to death at any certain time. We chose to fight for her until the very end, which for us was when the doctor started chest compressions. (I have a website for her, www.believingandachievingforabby.com, in case you haven't seen it before). I know of other families who just chose other ways to cope and deal with the deterioration, in a less aggressive manner. I suppose it depends on the parents values, religion, and mind-set. In writing about Abby's death, I hope you I am know implying that Eve is on her way to death, because that is not what I mean to say. None of us know what is going to happen, if, or when. I can tell from your posts that you are a great, loving mom and are following your heart. That is what you can do for Eve right now, give her love. Bless her little heart for going through such a nasty fight and take care. Beth
Tina, Just wanted to offer
Submitted by Cristy Balcells on Fri, 02/05/2010 - 7:11pm.
Tina, Just wanted to offer you some support, because you do it so well for so many other people here on this community! I know you're scared - we've been scared before too. But, I will tell you that no one knows what tomorrow or next year will look like! Keep your faith, and keep your mind on Eve's smile and your love for her. My Eva was very very sick once, and still has many episodes where she is unresponsive, but she then surprises us and has weeks or months where she is amazing, alert, engaged, and always smiling. I also wanted to say that regression periods are SO directly related to illness, so just because Eve is weak right now doesn't mean that this is the beginning of the end. You are a great mom and a great advocate for her. Sending you strength! Cristy
Cristy Balcells RN MSN
Executive Director
Christy we had 5 days or so
Submitted by Tina_EvesMum on Sat, 02/06/2010 - 5:24pm.
Tina Mum of 5 children Eve has just been given a suspected diagnosis of Mitochondrial Cytopathy.
I do not know what the future holds but I am glad I know who holds the future!