Today we returned to the QMC in Nottingham with Harriet to see the consultant of neurology Mr. William White House.
We initially arrived just after 11.30 am and parked directly outside the hospital and got all Harriet`s medical and essential equipment together, including her suction machine, emergency Tracheostomy case, feeding and oxygen machines.
The letter we received stated that we may be at the hospital for a few hours and at the time we arrived, Harriet was already late for her second feed of the day and therefore we had to find somewhere to feed her in a very busy corridor in the hospital . One of the nurses weighed and measured Harriet and then let us into a side room that was no larger than a small garden shed, where we were able to feed Harriet .
Harriet managed to finish her feed just before we were called through to see Mr. White House, he was pleased to see us and asked us if it was alright for one of his colleagues to sit in with us during the meeting, which we were more than happy with as we just wanted to find out whether there was any news as to why Harriet was the way she was.
Mr. White House asked us whether we had had any results back from Great Ormond street, to which we both replied that we were still waiting for them and were told that we should have these around the middle of December, but the anxiety of not knowing was incredibly stressful.
In our last meeting with Mr. Whitehouse at the beginning of September, he said that he felt Harriet had a White matter disease and showed us why this was on the MRI scan, there are about 40 different white matter diseases that all seem to be either severely debilitating or life threatening . I asked Mr. White House whether he still felt that Harriet was suffering from a white matter disease, to this he replied yes, but until the results come back I have no idea which one it is and it could even be a new White matter disease that has never been seen before.
We were both upset by what Mr. Whitehouse had said to us but kept things together for Harriet.
Harriet was then examined for her head size and overall development, all of which were following the normal growth development axis.
After Harriet`s examination Mr. Whitehouse said that he would chase up the results at the QMC as he needed to try and put all the pieces of the jigsaw puzzle together in order to give Harriet a label or prognosis, whether this be good or bad.
We left the QMC under no illusion that the news that would come within the next few weeks could be devastating for Harriet and ourselves, but all we can do is wait.
Mum and Dad