A frustrating day today.
The specialist nurses got the machine for the harvest cell transplant ready around 10.30am. When we took Niamh to the room, she got v scared and distressed. We eventually calmed her down so we could start at 11am. Unfortunately when the nurse checked the central lines, she was able to flush them but not draw blood from them. She put some special product in the line for an hour, that didn't work. Asked an IV specialist nurse to have a go at unblocking the lines but no result. For the harvest machine to work, there needs to be a good flow of blood coming out of the line. They then asked a doctor to put a canula in Niamh's hand (another traumatizing moment). They were hoping to use the canula to draw the blood into the machine and flush it back through her central line. It was working on and off for about an hour but eventually gave up due to lack of pressure. It is so disappointing as we were in that room for 6 hours, her cd34 count was perfect and yet we came out with nothing.
They have checked her cd34 count for today and it is now 1000, double what it was yesterday. They expect that there will be enough on Monday morning to try again as long as the lines are unblocked. It is such a shame that it is now the weekend as tomorrow would have been ideal. Unfortunately the lab where the cells are kept frozen are closed on weekends.
Apart from this frustrating episode which took most of the day Niamh has been well. Her neurological symptoms are still worse in the morning, better in the evening. The neurosurgeon says that the pressure in the head is usually worse in the morning.
As for the shunt, the plan is for her to have a scan on mon or tues and make a decision by wed.
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