You guys know we have 3 wonderful daughters and that our eldest, Rebecca, who has Down’s syndrome, been back living with us since Xmas time. The care company who were looking after her in independent living in Twickenham, called us up to say that they were struggling to offer her adequate care. It was suggested we should re-take the care of her after 8-9 years living independently. Serious stuff. She came back to us 3 stones overweight, heavily anxious after 2 years of being kept indoors during the covid situation, and we couldn’t recognise the carefree, confident, smart, happy and adventurous young women we’d known since childhood.
It was very scary to be honest. She wouldn’t sleep, staying up all night propped up in her bed and we couldn’t really raise her from her bedroom doing the day. She’d stopped showering at her care facility and had been ignoring her personal hygiene (including dental care) and we were really having to insist on her getting up to look after her personal hygiene. It came to a head one day when she went into melt down and we had to call the GP in to check her over. This ended up with her being admitted to Warwick Hospital via an ambulance – after a 14 hour wait for the vehicle – it took 3 hours to get her into the ambulance because of her anxiety. You have to understand that she has a massive fear of hospitals and all things medical. So getting her there was a huge struggle and a little triumph.
But typically she became the life and soul of the party on on the ward and we were able to take her home the next day with a new regime of medicines (which have worked really well since then). We had a follow-up appointment at Stratford Hospital for a CT scan for Becksy, to try and identify any brain symptoms causing the anxiety issues. But after an hour or more of trying she simply was too fearful of the procedure and we had to abort it.
Then in February she had the accident on the stairs in a hotel whilst we were visiting Carol’s brother and she badly damaged her already degenerative knees. This was a major setback of course requiring wheel chair support and walking aids. But before we reached that point she had a series of major fainting sessions in the bathroom because of the pain getting Into and out of the bath. We had to call the ambulance service again one day when we simply could’t raise her from the floor. Again another major problem getting her into the ambulance (a neighbour was held up 3 hours getting out of her driveway but she was lovely over it). More medication – mostly strong pain killers.
The good news was that Becksy was shedding weight with a proper diet (over 3 stone since December) and her anxiousness was massively reduced. She’s been sleeping well for months now and her happy nature has returned thankfully. And physiotherapy with the lovely K at Stratford Hospital was really helping.
But in August we received the appointment for Becksy to attend Kings College Hospital for major dental surgery. We’d been chasing this for at least 3 years, not helped by covid, as her dental condition had deteriorated under care. Long story short she needed to be treated under GA and had 7 teeth extracted, 4 fillings and some abscessed jaw bone removed under a fairly major procedure. It’s taken almost 3 months of taking salt water swills to ease the discomfort but thankfully she’s eating happily again.
Despite this her health seemed to be progressing nicely, especially her improved mobility until about 3 weeks ago. That’s when Carol noticed how pale Becksy was looking and took her to our GP for a check up. She was concerned and did an immediate blood test. We then heard from Warwick Hospital at 9.30pm later the same evening that they wanted us to take her into the hospital urgently. I explained that both she and Caz were in bed and asked if we could delay things until the morning (especially as I know from experience that nothing would happen on a late w/e evening).
So next morning we took her in again and it took another 5 hours of procedures to go through A&E to get her onto a ward. This is the problem constantly. Anyway it became clear that Becksy had a major problem – her blood level was incredibly low and her haemoglobin/iron levels within her bloodstream were dangerously low. She needed more blood tests and a cannula to be fitted. Because of her anxieties this was a real ordeal but eventually they got it done. She received several transfusions over the next few days to boost her blood and iron levels.
She was actually a week in the hospital and as ever she was the star of the ward and the doctors/nurses loved her. But, whilst she got her levels rebalanced, there was still the need to identify the cause of the blood/iron loss. A CT scan would be the first step. We tried twice more to get her to have the scan; once with me by her side and secondly with her fave doctor. But we couldn’t overcome her fears on either occasion sadly.
During her 6 day stay we noticed her cannulated arm was badly swollen and reddened. We pointed this out to the nurses and doctors several times but they kept saying it was just a circulatory problem. Increasingly Becksy’s arm became sore to touch and they still denied it was an infection. Becksy was allowed to return home after 6 days. At the first opportunity we took her to our GP to assess the arm; she couldn’t believe the hospital had not noticed the obvious infection and gave us a heavy prescription of antibiotics. Sigh.
Two and a half weeks later the infection has gone but she still has poor finger movement and painfulness in her right arm. We just can’t believe our daughter can come out of hospital in a probably worse condition. To compound this lack of competency we received an outpatient appointment for Becksy to have a CT scan at Stratford Hospital a week or so ago. The doctors has suggested we give her fairly strong sedatives an hour before the scan to ease her anxiety. We got to hospital, only to find out that Warwick Hospital had cancelled the appointment without informing us. And we’d administered sedatives to Becksy unnecessarily.
You kind of start to lose faith in the NHS system when this shit happens. We then got an appointment for a 5th CT scan back at Warwick Hospital earlier this week. She wanted her sister Sarah to be there and with the help of some really helpful staff we got Becksy to actually do the scan. Wey hey.
All we have to do now is await the consultant review and hopefully it’ll demonstrate a simple medical issue curable by medication.
We are just in awe of our daughter. She’s full of life again incredibly. The doctor at the hospital told us he would have collapsed with Becksy’s blood levels. She’s tough as teak but we just can’t help thinking that she deserves a health break now. She’s put up with a lot and still comes up smiling. As soon as possible we want take her somewhere nicely recuperative.
Love my daughters