Down into the abyss and back up again... we have been down into the deep, black abyss again..

As you may have noticed when I wrote yesterday, Emily was not feeling so good, every time we came to see her she was upset and crying with her thin, almost non-existent little voice. We sat by her bed a lot and Keith was able to hold her for a short moment while I fed her through the probe. We tried to give her the bottle but she could not take it, just like the dummy, she did not get a grip on them, her tongue lived a life of its own.

Safe in daddys arms...

Yesterday the nurses started to get a bit worried as well. Drugs and tranquilizers were not having the effect they should anymore. She fell asleep for a little while but soon woke up again and was upset. She had had problems with her stomach during this time but it was getting better again, so that should not be the cause of her discomfort.
We came and went many times during the day and when we got there in the afternoon they said that we should let her be alone, do not go up to her at all. They had tried to make it as quiet as possible around her, a screen had been set up and sheets hung over her so that it would be dark and cozy. But she was still crying... For me it was intolerable, to hear her cry, but not be allowed to touch her or comfort her... I know that Keith felt exactly the same way.
By now I had seen her for so many days without seeing "her" so I was almost convinced that something must have gone very wrong. Moreover, the little boy left the room to go down to the ward, but Emily was still there ... I know that he probably had a different diagnosis and perhaps a more simple operation, yet, in my confused brain it meant something was wrong.
We went back to our room, and without being able to help her, we must leave here alone and trust that the nurses were looking after her. (Which we know they do, they are amazing)

This morning we went back to see her. When we got in to the room, 6-8 doctors were standing around her bed and we went out again to let them finish whatever it was they were doing. When they were finished our surgeon and a department doctor were still in there waiting for us.
They said they were worried about her condition and they had to do some more examinations. To begin with, they wanted to do an MRI scan to see if her brain was swollen and to see that nothing had happened to her when she had her "collapse" after the operation. They were concerned that she might have some brain damage...

Once again the black hole opened up underneath us! Everything I feared was brought up and the images of a little happy girl flashed in my mind, a little girl I might not see again, at least not in the same way...

We were in a state of shock when they told us that they would take an EEG, and within 5 hours, they would make the MRI scan and before that, she would be sedated again. Again, like so many times before, we wandered around, aimlessly, we called our families and prepared them for the worst.

I got to talk to a psychologist and she helped me to see it slightly differently, she said that some children react the same way as Emily, but that it did not necessarily mean that they had any damage to the brain. They are simply traumatized by everything that has happened to them. In Emily's case, such a thing as the first attempt to remove the respirator could have been very frightening. She said a lot of other things that really made sense, so I was a bit calmer when I left her ...

The nurse who took care of Emily rang shortly after one o'clock and said they would sedate her for the MRI and that she once again would be put on the respirator. They would let us know when she was back in the ward.

We returned to the ICU at 16:00 and Emily had just arrived back in her room, she finally looked relaxed and she was sleeping deeply. Our surgeon came and talked to us about what they had found.

They could not see anything wrong with Emilys brain! Everything looked like it should, no indication that anything had gone wrong or any swelling in the brain. They could not really explain why Emily behaved as she did, but sometimes some children behave like this and the only thing that helps is time. They need to be left in peace and get back in their own pace. She will now stay as long as she needs in ICU, no plans are made, we are taking each day as it comes.

We've been to hell and back many times now, I know that Emily receives all the help and care they can offer, but despite all the soothing words and examinations, I will not be able to relax until she is in my arms again and is showing signs that she recognizes me .. We have almost reached the edge of the black hole, but we have not reached the top yet, we do so only when we are down in the ward and maybe when we can take our first walk together again ...


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