While we were moving house we had our A Team look after Benjamin. Kerry, Kelly and Liz so we knew that he would be absolutely fine. We weren't expecting any changes while we were moving home. Well we were wrong. Benjamin was having a funny moment and Professor Wolfe decided that he may be ready to come off the ventilator and put him on the vapour therm. There seemed to be an air of contemplation and awe that he managed to be settled on the vapour therm. when Liz phoned to tell us their plans and then to say it had worked and that he seemed ok. Me and Dave were surprised and very happy.When we go back to Bristol we will get to see our little boys face, his bonny little nose and hear his voice.
We then heard from Kerry that Benjamin wasn't doing so well and that he may have to go back on CPAP. That's not so bad its still not the ventilator. Benjamin was working very hard, his breathing was stronger and heavier and his colour was grey. Maybe CPAP will be better and we go back to our little boy with a little hat and most of his face showing.
All Monday morning we looked forward to seeing Benjamin, with some trepidation but excitement. He looked great when we arrived. He was wearing his yellow duck baby grow, wrapped in his blanket and was awake and watchful. He loves his daddy's voice and just stared at him the whole time we were there. After about 45 mins Benjamin became quite unsettled and a little mottled. We finally left him sleeping so hoped that it was just excitement of seeing Mommy and Daddy.
I received a phone call at midnight telling us he had got worse and that he was going to have to be re-intubated ( ventilator back in) and that he still hadn't passed any urine either. So we knew it may have to happen but it was so sad. There are two sides to the feelings you get when your told something like that. The mommy side cries for the loss of your child's freedom to move, interact and play with you. having not seen his face for nearly 5 weeks, that little glimpse is heart wrenching. The other side is the grown up thinking that its better to be on the ventilator so that his heart you understand that its better to wait and isn't pushed to hard and that the possible damage done to his heart function is minimal and will hopefully not even be an issue. as a grown up you know its better to wait til he is strong and naturally ready to come of the ventilator.
Sometimes I want to scream at the grown up side and tell it that I don't care whats sensible. I want my baby home! Why cant we have that normal life we are craving and why do I have to wait so long?
People tell me it will come but WHEN!!!!!!!
Rant over, Benjamin is now very poorly now. He is on the tube again, his kidneys have been damaged as the blood wasn't getting around as it should when he was working so hard. They have put in a PD catheter which is a type of dialysis. The tubing and bungs involved go through his belly which is just so awful.
He is on muscle relaxant so he is paralysed again and is on sedation and morphine. He was taken off his feeds til the afternoon.
We have gone from an active, verbal baby to a baby who cant move, cant interact and is poorly again and all in 3 days.Once he is stable again, we will be talking to the doctors and surgeons about having a traceostomy! Will we ever get home???
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