A few weeks after the school strikes had finished in April 2017, we had an appointment with Harriet`s main consultant, Dr. Richard Bowker at the Derby Royal Hospital. We talked about the ongoing problems Harriet was experiencing with her severe asthma and the effects this was having on her respiratory system. We also talked about the increased medicine regime, the lack of sleep Lesley was having and the effects of looking after a vulnerable child over a long period of time.
Dr. Bowker could see that Harriet`s condition was becoming harder to manage and asked us whether we would consider a continuing care team plan or package.
If this question had been asked 12 months ago, we would have both said “ No thanks, we can manage just fine “, which is something we had said for the last eight years – but the school strikes had taken such a toll on both our mental and physical health, that we simply had to say yes.
Dr. Bowker was pleased that we had finally accepted help and told us that he would start to get things in motion and that the relevant people would be in contact soon.
June 2017 – today we had a meeting at Harriet`s school to talk with the continuing care team about a package that was bespoke to Harriet and would give us some much needed respite. There were members of the Ivy school team, which included teachers, nurses and people that generally looked after Harriet during the day, together with a lady from the continuing health care team.
We all spent nearly two hours going through the continuing care application form, in order to make sure that we covered all Harriet`s extensive health care needs. The form was very intrusive at times, it looked at all aspects of her life, highlighting the dangers and concerns that were associated with her debilitating condition.
The lady from the continuing care team told us that she felt we would be entitled to about 3 nights of care relief and would have to put this forward to the commissioners for consideration.
A month later we received a call from the continuing care team, to say that the funding had been granted by the commissioners for 3 nights. We both felt quite relieved and hoped that we would now be able to get some much needed rest.
We were given the option of agency staff or Kite Team staff from the Derby Royal Hospital, Dr. Bowker had told us that if we went with the Kite Team, that we may get extra help with Harriet. It seemed a bit of a no brainer really, we chose the Kite Team, because a lot of these people knew Harriet or had heard about the problems she was experiencing and we therefore wanted to keep continuity. The kite team continuing care team package also assigned an experienced physio/respiratory lady, she had a good relationship with the Queens Medical Respiratory team and knew Harriet`s respiratory consultant.
Things went very quiet for next couple of months, we were told that many of the people involved in putting the care package together were on holiday and that this would be looked at in early September.
September 2017 – a lady from the continuing care team came to see us at home and went through a lot of forms with us, she explained what the care package would provide for us and helped us to have a better understanding of what was involved.
The lady explained to us that three to four care workers would have to be individually trained by an experienced nurse, before being signed off to look after Harriet on their own. The care workers needed to be able to do a tracheostomy change, manage the airflow machine, look after the oxygen, administer medicines and be able to tell if Harriet was in distress.
The thought of having a nurse and three or four different people in the house over a period of time, seem quite daunting, but we wanted to give it a go and just went with the flow.
Over the course of the next couple of months, the nurse regularly came out to the house, each time there would be a care worker, who would work with the nurse in order for them to get used to Harriet at night.
November 2017 – tonight was the first respite night, a lady from the kite team came out with the nurse, to do a night shift. We were told to go about our business, as though they were not there and to try not to worry about Harriet as she would be well looked after.
It all seemed very weird, but we tried to think of it as our time and that Harriet was going to be fine.
Although I found it strange to have other people in the house at night, I did finally get a few hours’ sleep, but Lesley really struggled and was not able to get any sleep at all.
The following morning we went down to see Harriet and the nurses, they told us that Harriet had been fine during the night and that they had no real concerns, they then asked us how we slept on our first night.
I told them that it was all a little strange, but I had some sleep, but Lesley could not sleep and was having second thoughts about the whole care package.
The nurses told us that it will take weeks, possibly months to get into some sort of pattern, but to try and persevere with it, as this was in place to give you both the much needed respite.
The weeks continued to go past, the nurses and care workers learnt more about Harriet, we started to accept the help and were slowly getting into some sort of sleep pattern.
The physiotherapist / respiratory lady had also highlighted some concerns around Harriet`s breathing and wanted to try an Airvo machine, to help calm the asthma and give her some much needed help to her respiratory system .
As the weeks went on Harriet seemed to adjust to the Airvo machine and her breathing seemed to be better, but she was still struggling.
The long term ventilation team were aware that Harriet was on the Airvo, but wanted to come and look at the possibility of her being introduced to a Nippy Ventilator system.
A week later the ventilation team came out from the QMC in Nottingham, to observe Harriet`s breathing and asked us if we were happy for them to try the ventilator. We agreed and Harriet was placed onto the ventilation machine.
Harriet instantly seemed calmer, her work of breathing had slowed considerably and she looked like a completely different little girl. The vent team were also really surprised that this machine had made such an impact to Harriet`s respiratory system and therefore decided to film it and show her respiratory consultant Dr. Thomas, at the QMC.
The team were going to take the ventilator back with them, but when Harriet came off the machine, she started to cry and became very upset and therefore the team decided it would be best to leave it with us.
Lesley initially had to have some training on the machine, before the team could leave it with her and then had to have additional training over the course of the next few days, in order to make sure she knew what the machine did and what to look out for, should one of the alarms go off .
I have also had some training on the ventilator, but still need to go over this in order to make sure I am fully aware of what Harriet needs.
The continuing care team also need to be able to use the ventilator, as this is part of Harriet`s night time care, some of them are already trained in using the ventilator, but still have to do a refresher course before they are signed off to use it with Harriet.
When the continuing care team are not with us, Lesley has to stop up all night, in order to make sure that Harriet is safe, which means there is a lot of responsibility and an extreme lack of sleep.
We have asked the continuing care team to look at increasing the amount of nights we have cover, as it is not safe for us to try and stay awake and care for Harriet, while she is on the ventilator.
Harriet`s school are also looking at increasing her care at school to a 1-1 basis, so she will need a specialist nurse to look after her during school time.
The continuing care team are providing much needed respite and the new ventilator is giving Harriet a better quality of life.
Jason
