Since I last posted, things seem to have moved forwards with Hallie's hospital appointments. On Wednesday 3rd October she is going to see the laser specialist at Leeds General Infirmary to discuss treatment and hopefully put some sort of plan in place for her first laser treatment. I need to put together a list of questions, there's so much I want to know! Friday 5th October will be a difficult day for Hallie (and mummy and daddy) as this is when she is having her MRI scan on her brain to check for stains - clusters of blood vessels touching the brain which can lead to seizures. I am no expert and I find all this very confusing myself so feel free to comment and correct anything I get wrong!
Hallie went into hospital last week for a sleep study to monitor her saturation levels (oxygen levels in blood). Not a nice experience for myself, Hallie on the other hand seemed indifferent, I don't think she cares where she is as long as she is with her mummy :o) Six beds in a bay, each sick child with a parent = 12, yes 12 bodies in a small bay! To say it was hot would be an understatement - all the children were naked with just pants or nappies on, including Hallie. The parents and staff were sweating too! I felt so claustrophobic in there, especially as I was surrounded by poorly children crying and wailing in pain and discomfort, It was quite unbearable. Hallie fed and went straight to sleep at 7pm, was hooked up to the monitor and checked on every three hours for her obs. I thought her stats had remained quite high (in the 90s) but the next morning the respiratory consultant came to let me know that the pattern on the trace showed there could be some kind of blockage which was causing Hallie's oxygen saturation levels to dip every few minutes - not dangerously - but enough to cause her concern. She arranged for the ENT consultant to visit Hallie in hospital that day. He came, stared at her for a while, watching her large tongue (another concern) and the way she was breathing. He asked my permission to take a photo on his mobile phone and send it to his colleague in the US (the speed at which we can communicate these days comes in very handy when trying to make a diagnosis!)
To cut a very long story (and long sweaty wait in hospital) short, the ENT consultant wants to perform an endoscopy on Hallie to see if there is any kind of blockage in her airways causing her saturation levels to drop - one suggestion was that it may be her large tongue causing the problem. The respiratory consultant came to see me (looking very concerned) and said she had been chatting to the dermatologist who initially saw Hallie and he was also very worried and wanted to discuss Hallie with his friends at Great Ormond Street as if Hallie had a vascular malformation (birthmark) on her tongue which was making it swollen and large, it would be something for the specialists at GOSH to look at and treat - I'm guessing because it will cause complications and be difficult to treat. We were sent home that evening none the wiser as to what was going to happen.
I got a phone call the next morning from Dr Jay (respiratory consultant) and she confirmed they had decided to do the MRI scan not only on Hallie's brain but on her throat and chest, to see the exact construction of her tongue and throat and check for abnormalities. While she is under general anaesthetic they will do the endoscopy as well and take her bloods to test. After these investigations are complete they will then be in a better position to decide whether she needs urgent referral down to GOSH.
So, big week ahead of us - I'm trying not to think about it - writing it all down on this blog then pushing it to the back of my mind until Friday. Hallie is as ever smiling and playing most of the day, hitting her toys and grabbing them now. She has also started chatting to me (this started last week in hospital, she could obviously tell I was bored and needed cheering up!) she makes the most beautiful sounds when she gurgles and smiles at me. Oh and her weight seems to be picking up - she has put on nearly a pound in the last 10 days! x
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