I hadn't intended to take such a long break and the bigger the gap the harder it felt to pop back, but a kind reader left a comment on my last post and it spurred me into action.
Late last year Pip was diagnosed with significant and widespread joint hypermobility which causes pain and partial dislocations in several of her joints. In addition she was complaining of constant dizziness and nausea and then the collapses began occurring and there was a query regarding a Pots diagnosis.
One particular collapse in the middle of May led to yet another hospital admission but in order to transfer her to a trolley the team used a Pat slide and in so doing her right shoulder partially dislocated and when she eventually came too she was screaming in pain. As a result this involved a two week stay in hospital to allow the shoulder to heal but we also had the added complication that every time she tried to sit up she lost consciousness. Finally she stabilised enough for her to be allowed home but within that first week home she collapsed three times and the following week her left elbow partially dislocated! By now we were veterans in pain and collapsing management and thankfully kept her out of hospital!
Pip's consultant is really lovely and knowledgeable and in order to ascertain what is going on he ordered a 7 day ambulatory ECG to track her heart rate during this time. When we returned to clinical investigations on Wednesday to have a 24 hr blood pressure monitored fitted, she lost consciousness whilst sitting down. The team also got their ECG machine on her and her heart rate was 127-156 beats per minute (a normal heart range is between 75-90), her blood pressure shot up and then plummeted as did her oxygen levels - in short she was in a bit of a mess. She was duly taken to the children's ward where the nurses remembered her from last time and after five hours she was allowed home.
The following morning I took some chocolates for the staff on the investigation unit and that is when they sat me down and explained that her heart runs at 127-156 bpm 24/7 even when she is sleeping which is abnormal and therefore the Pots diagnosis isn't looking as likely and there is now a concern that there is something physiologically wrong with her heart. Her case was marked as urgent and the cardiologist on that unit turned his report around in half a day. We are now on a waiting game for the next steps and understandably she is frustrated that she cannot go out on her own or play football at the park. Her consultant had already made a referral to the cardiologist attached to Alder Hey Children's Hospital in Liverpool -they visit our local hospital once a month so hopefully we won't have a long wait.
Thanks for reading, I think we are all caught up and hopefully now that Pip is in her last week at Inter High I might manage to pop in this space more frequently! I'll leave you with two recent photos from Pip's yearly Midsummer Fairy Day with Beth, they had enormous fun following a Harry Potter Scavenger Hunt courtesy of an ETSY download, it was well worth the £5.00 :-)
