What a week!
A while back, Hope's physiotherapist told me she was concerned about Hope's neck, and her difficulty in achieving a 'chin tuck', so this, along with mine and her concerns over her hips, and her continuing 'specialness' with her twisty ankles, prompted her to refer Hope back to the orthopaedic consultant.
Fortunately, for my sanity, it wasn't until the morning of the appointment, that I realised where the appointment was. The Brunel treatment centre. I googled it, merely to find directions, so imagine my horror, when this is what I discovered :
The Brunel Treatment Centre is a 128 bed state-of-the-art facility attached to the Great Western Hospital. It has been specifically designed to treat patients who need elective (planned) surgery and where patients are offered a pre-assessment health check to ensure they are fit and informed for that surgery.
So that panicked me to say the least.
Upon arrival, We were sent for lots of X-rays of various bits from all angles.
Then we met with the orthopaedic surgeons, who thankfully agreed that it's worth perseveringly with the splints in regard to her twisty feet and ankles, and leAving surgery as a last resort. Phew!!! They also remarked of her spine, that it appeared straight - at present, at least. This is great because in the past she'd been diagnosed with scoliosis - a curvature.
Her hips were also found to be fine, which is a relief, because surgery and spiker cast would be the treatment.
However, on our way in to
Meet with the ortho surgeons , Ravi, Hope's main consultant, spotted her, he followed us in, asking what was wrong with Hope, saying that she didn't look well, and asking me lots of questions. He apologised for worrying me, told me not to panic, then arranged for us to go to the childrens' unit for tests after this appointment.
We did, but Ravi wasn't about, and there wasn't anybody available to do the tests he requested, so we arranged to go back on Friday. Despite Ravi telling me not to, I obviously did worry. So I rang Hope's disability nurse, who works closely with Ravi, and she arranged for us to be fitted into a clinic with him the next day.
Ravi gave her a thorough examination, and found her in fairly good health apart from the constipation/fissures - poor mite. But he felt she wasn't as she was last time he saw her a few weeks ago. But I explained to him, this is how it is with Hope. Last time he saw her, she was 100% and on top form, but she's not always , and mainly, we don't know why.
He wants to see her again next month
We had to go back to the childrens' unit on Friday. Fortunately we saw a competent doctor who took blood from Hope as well as can be expected.
We had to wait for the blood gases results. The doctor came back with them and said they seemed ok, but her lactate levels were a bit elevated. They were 3.45 (should be less than 2), but Hope's usually run around 4-5. This equates to lactic acidosis, and causes damage to organs and is literally poisoning her blood. So being that low, makes me very happy. Though I'm slightly puzzled as to why they are that low, and wish I knew what caused it, and how to keep that low, or even bring it down more.
6 days ago