I ask you once again for your prayers.

I haven't written now for some 10 weeks....how do I know? Because that is the length of time our son has been in intensive care since his surgery on the 4th August.

This time the surgery was to remove a brainstem tumour. He was having symptoms, all connected with breathing,swallowing and his gag reflex, amongst other things.

Surgery went well, all the tumour was removed, however after surgery our son was unable to breath on his own and had to be ventilated. He is still on that ventilator and still in intensive care.

They are in the process of weaning our son off the ventilator, he is incredibly weak so this is taking a long time, particularly as he has had a couple of set backs with chest infections and becoming very septic. He was given a tracheostomy approx 9 weeks ago, this Monday just, he was given one with an adaptation to enable him to speak, although as yet he hasn't been able to produce any sounds.

Once he is off the ventilator he will have his 'gag' reflex assessed along with his ability to swallow and cough. If he is able to protect his own airways they will remove the trache, if not it will be replaced with a permanant one.

We long to hear our sons voice.

He longs to speak, to have a cup of tea and piece of toast. the simple things in life.

He longs to come home.

17 months ago our son finished his 2nd year in university, VHL since then has destroyed his life as we knew it, it will take a long time for a new life to be rebuilt. This is why I ask for your prayers, our son has the toughest of all his battles ahead of him, one that is going to take many months for him to win. He needs your prayers to help him stay strong, to know that he CAN win even with the odds againest him.

Thank you

By BriannaB
Posted October 14, 2009 at 10:14 pm
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I am so very sorry for your son's situation. I dont know what its like to have my love one on a venilatior that long, but my husband was on one after his 4th Brain surgery and had to have a feeding tube as well. You and your son will of course be in our prayers. People have come back from things like this, and I will hope and pray for you that your son will be one of those people. I know it is so tough to watch the ones you love suffer, Keep up a strong attitude, and love your son. And of course, keep praying, and dont loose faith.
I wish you all the best.

By joyceg98
Posted October 15, 2009 at 4:20 am
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We are thinking about you and keeping all of you in our prayers. It will take a lot of work, but hopefully he will make a marvelous recovery. He will need you to be strong for him and to keep hope alive for him.

much love,
Joyce

By pupa
Posted October 15, 2009 at 2:56 pm
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Dear Myway
I feel for you my son hasc has it very difficult as well and sometimes the uncertainty is what creeps at you like a bad dream. VHl is a nightmare but we understand, My son is 20 and he has had several surgeries, loss of vision but it has made my childern stronger and appreciate the truth of life I pray that your son has a speedy recovery, In hebrew you say "refuah shelama" Pray you and your family have peace of mind and good health.

By Myway
Posted October 16, 2009 at 4:07 am
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Thank you...... I shall take your words with me, keeping them for moments when dark thoughts creep into the mind, for times when lonliness wraps itself around and know that we are not alone.

Thank you...

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