Harriet had an appointment with her overall consultant at Derby Children`s Hospital Mr. Shankar this morning, to see how Harriet was developing.
We arrived at the Derby Children’s Hospital just after 11.00 am , we went through to get Harriet measured and weighed before we saw the consultant .
Harriet had been experiencing an allergic reaction to her Hyacinth patches, this had caused her skin to get extremely sore and blister . We were advised by the consultant to place the patch on her back as this would give her ears a rest although it might not be as affective .
Over the last few months Harriet has been making sudden jolting movements, which happen randomly whether she is awake or asleep . The consultant immediately thought that Harriet may be experiencing a series of mini seizures and therefore examined Harriet for body tone. The consultant told us that Harriet was a little stiff and therefore wanted to increase her Baclofen medication to see whether Harriet’s stiffness was a controlling factor.
There seemed so much that we needed to talk about with the consultant and felt that we had to make sure nothing was missed off the list .
The consultant had not been updated by the QMC in Nottingham regarding Harriet`s back assessment and therefore we told him that we saw the back Surgeon Mr. Grevitt and that in his opinion Harriet needed surgery as her lungs were currently being crushed by her curved spine . We also told the consultant that the back surgeon had referred Harriet to see a professor of Cardiology, consultant anesthetist and that Harriet would need an MRI of her spine in order to evaluate whether Harriet could cope with the nine hour operation to try and straighten her curved spine .
As Harriet has a tracheostomy she is unable to talk or express herself vocally and we were due to test her with a speaking valve today to see whether she would be able to make any sounds, but the consultant felt uncomfortable with this as it could potentially put Harriet’s life at risk and therefore he decided not to test the speech valve, but said her would put a request in for ENT in Nottingham to evaluate Harriet for the speech valve .
Harriet’s NG Tube had also been causing her discomfort and we therefore highlighted to the consultant that although Harriet had been referred in February for a feeding tube in the stomach, that we had still not even had a letter to confirm an assessment .
Tomorrow will be Harriet’s first Birthday, which is something we never thought she would live to see given all the worst case scenarios from the medical professionals at various hospitals .
We love Harriet so much, no matter what her problems are and wish her the best Birthday ever !
Mum and Dad