Sorry Life has been MAD!

Sorry I haven't been on the site much, Right now I have the flu,So I have lots of time...............HAPPY 6th. BIRTHDAY!! Eve,;may you have a wonderful year............God Bless...Lori:)

Awww thank you Lori. Hope you shake the flu quickly. We seem to have widespread colds here. Hope it doesnt turn into anything flu like. Eve has slept most of the last three days. We have aneuro appointment tomorrow so hopefully get her checked out thoroughly. Hugs

Please Take Care; I thought I only had a cold. I've been on Tama flu for 3 days now. I've had a heavy chest so I got a chest x-ray today. I wish I cold say I felt better, but all I want to do is sleep. You and your children are in my prayers....God Bless...Lori:)

Well we had the appointment with the Neurologist. He is a lovely man and I respect him and his professionalism greatly, he is also very compasionate. We talked at length about Eve's autonomic problems, her erratic heart rate and breathing and her lack of temperature control, he was anxious that we should be aware that whilst there was nothing that could be done to alter these errors of autonomic control the fact that low sats did not trigger faster breathing and that her brething rate often slowed and shallowed for no reason would be likely to be an event she didnt pull through from ultimately. We talked about the symptoms we were able to do something about, the fact that baclofen has improved her painful spasms and the clonazepam has all but cleared her myoclomic jerks, these are positives to cling to, ways we have improved her quality of life. We talked about the importance of ensuring we maximised her quality of life whereever we could. We also talked about night time ventilation, he was anxious we talked about it now before it became a viable option, so that if and when it does we all know that that everyone feels it would, be an appropriate step to take, there would be no waiting for other peoples oppinion. He felt that if it was proved her night time breathing was impacting on her day time quality of life then Bi-Pap would be indicated and appropriate. I was able to express my anxiety and distress about the fact that nothing can be done to change the prognosis, David and I have not accepted there is nothing to do to make things better! At this point I was struggling to hold back tears and didnt always succeed. Again his compasion was evident, he told me no one should expect us to accept it! he also said that it was good to question and challenge the doctors, it is too easy for them to become complacent and say there is nothing we can do! They need to be made to examine that and be sure that they have not missed anything. We have been concerned recently about Eve's episodes of seeming to have masses of secretions, sometimes so thick they are compromiseing her airway...needing lots of chest physio and suction to relieve her of them...It was decided between him and the peadiatrician that saline nebulisers would help to losen these and make them easier to get away. He also said it was most likely not a case of increased secretions but episodes of her not being able to clear the secretions she has...not coping as well with them and therefore inhaling and choking as a result. All in all it was a helpful appointment, it confirmed a lot of what we had alredy worked out...this wa sa two edged sword, on the one hand confirming our fears and allowing us to relax in that we were not imagining things, not exagerating issues etc....but on the other hand confirming our fears and anxities and removing the hope that we had got it wrong. I hope that makes some kind of sense. We can see Eve has deteriorated, and quite significantly so in that we see changes in her week by week. We have felt often that we are watching her life slip away before our eyes, there are those who seemm to be telling us to not be so negative, she is just a bit tired and will get over it....but we are not imagining it The professionals who know their stuff can also see the progression. We know there are some things that can be helped and others that cant...I want to clutch at that ellusive straw and see my baby gather strength..but it is always just out of reach! I left the appointment feeling like chewed string...a wet dish rag and washed out. I have been pulling myself back together to a degree...I want to hold her and cuddle her and gather her smell and her face and her giggle into my memory...I want to hold her tight and never have to let her go....but I also want to be sure I am doing my very best for her...ensuring she has the best quality of life we can give her for the time we have with her... I have soent almost an hour tonight on the phone to my minister. Juat talking throuh how I feel about it all....no judgemnt no how I should be, what I should feel etc....just pure love and promise of prayer.... Hugs! Tina

Tina, You have written so beautifully and honestly. I admire your attitude and your sense of reality, yet keeping hope for Eve. Do cuddle her as much as you can and enjoy everything about her. Our little girl also did struggle with many of the same issues. The secretions and suctioning were particularly bad. The saline nebs help as well as the regular nebs. Continue to have faith in what you can do for and know that what is not changeable is out of your control. What a great advocate you are for her. Beth