To calebs mom

[france]

I just need to post my story if you dont mind.
I would love to receive any similar experiences and most of all any advice, share thoughts and feelings please

[france]

Cameron was born on the 18th December at 10.10 by section, and as soon as he was born he could not breath on his own and had to be ventilated. My husband was taken from the operating theatre to see him and for the doc to tell him what was happening and then he was brought through the operating theatre in an ICU cot so that I may see him, but to be honest it was hard to see anything really. We did not get to see him again until 18.30 that evening as they had a troublesome time trying to get him stable with his gases and temperature. We were both a little shocked and seriously worried when we saw him on this mechanical bed with machines all around him and tubes from his mouth and legs and wires from all over him. I now know that Mark, my husband, did not think that he would last the night. We had a visit from one of the ICU doctors the next day in my recovery room on the ward and was asked lots of questions about myself and both of our families and their medical histories and then i think we worried even more. Since then they have done so many tests on Cameron that there is a book of A4 pages 1 inch thick full of tests, and they have found that Cameron is actually healthy really, but there is a signal block to the nerves working certain muscle groups. This comes and goes, as sometimes he does try to breath by himself and moves more and other days when he doesnt do anything. For some of the Genetic and Neurology tests they had to do a muscle biopsi from his leg, so they took him to the Sick Kids Hospital in Edinburgh to do this. When he got back to the Neonatal Unit at the Edinburgh Royal Infirmary, and he had settled in again, we visited and were told that he had to be recovered twice during his trip and they had a lot of work to get him stable again. They have covered all known diseases and all known disorders and all they can tell us is that Cameron has a signal block sometimes. We had a meeting with the Neurologist leading Camerons case and he told us that he will eventually be moved to the Sick Kids as he is getting older and larger and can not stay at the Neonatal Unit much longer. We were also told that there is a deteriation patern from Camerons birth until now which, if they are correct, means Cameron may only last another 2 weeks to 1 month and they had to infom us that there is the option, in this country, to turn the machine off if we all agreed. They told us this because at the moment they think that Cameron at best will be bed ridden and on a ventilator for the rest of his life and will not change from his present condition. They also think at the moment that he will not have any awareness of anything. This was when the ground opened up underneath us and we both realised what was happening and that we may be facing the fact that our wee boy wont be coming home at all. At the moment they still have a couple of tests which have come to light due to extremely new research, but as they have ruled out all known diseases and disorders they may not be able to treat him, but just only tell us what to expect. He is now 7 weeks old and is feeding well through a tube into his stomach via his nose, on milk. He is growing but he cant open his eyes too much, in fact just once or twice a day, he cant moved too much, his arms a little, his hands are folded to a fist and he cant open them and from time to time he can not urinate and has to have a Caphitor put in to releive him. They also think that if he gets a chest infection due to his ventilator that he will not survive as he does not respond well with anti-biotics.

So, thats where we are at present.

I would so appreciate to hear from anyone who has friends/relatives in this situation or similar state.

[lovemymak]

I'm so sorry, I don't have any experience with what you are going through, but you have my full support and prayers! You are doing an amazing job!

http://www.tracheostomy.com/iB_html/non-cgi/emoticons/hug.gif Sarah

PS - I am going to post this on the main board since more people will see it there.

[Alex's mom]

I'm so sorry you are going through this. I don't have experience with these issues either but wanted to give you my support. http://www.tracheostomy.com/iB_html/non-cgi/emoticons/grouphug.gif