Harriet had been home from hospital for a couple of weeks and was booked in for an outpatient assessment with the paediatric team at the Derby City Hospital .
We packed Harriet`s suction machine, cathetors, saturation monitor, oxygen and anything else we needed for the 20 minute drive to the hospital . Once we arrived Harriet was weighed and assessed by one of the nurses and a member of the Kite team . Harriet had made some good progress in weight and now weighed in at just over 11lbs, the nurses and staff were very happy with her weight gain and overall condition .
The nurses allowed us to stay in the side room for a further 20 minutes as Harriet started to get distressed and needed regular suction from her mouth, nose and Tracheostomy .
It was now time to go and see the consultant paediatrician Dr Shiva Shankar and his team , who were made up of a member of the kite team, Physiotherapist, Junior doctor and the dietician .
The first thing we raised with Dr Shiva Shankar was Harriet `s secretions, she had been on Antibiotics since she had come back from Great Ormond Street, this medication was continued while Harriet was at home on a full strength dose, until this meeting in order to control Harriet`s secretions during the day and at night when we needed to sleep.
It was decided that Harriet should stay on the antibiotics until the team had managed to track down the bug that was causing a problem with her secretions and enable the team to give Harriet a smaller dosage of antibiotics that would be constant, but just enough to control any potential bugs or viruses that may lead to her having to go back into Derby City Children`s hospital .
The dietician was happy with Harriet`s weight gain and therefore adjusted her feeds from every three hours to every three and a half hours, which was great .
Harriet has never been able to suck or swallow and every time the consultant looks at Harriet, I always get him to check to see whether the Suck, swallow or gag reflexes have developed . Dr Shankar examined Harriet to see whether any reflexes had developed and there was no change in her condition, which is something I was expecting, but made me feel very sad that my little girl was not improving and there was nothing that I could do or any member of the team .
We left the meeting with the Physiotherapist to see whether there was anything we could do to help Harriet with her head movement and curved back which had been caused by Harriet sleeping on her side as her Tracheostomy may get blocked if she spent too much time on her back .
Harriet did not get on well with physiotherapy and at one point started to turn a grey to blue colour and we had to stop in case Harriet required any oxygen .
We have made an appointment to come back and see the Physiotherapist as we feel that Harriet will really benefit from the exercises .
I just wish I knew what was wrong with Harriet and how to fix her.
Mum and Dad