Hallie had her laser appointment on 3rd October - it was her initial appointment and we went armed with a big list of questions expecting a thorough consultation and a plan of treatment put in place for Hallie so we could get the ball rolling with her treatment early.
This did not happen. We saw a registrar who spent time making notes about Hallie and saying things like "well, it looks like a port wine stain" DER! I was more than a little displeased and altogether unimpressed with the consultation. I had to strip her down to her nappy on what looked like a dentist chair which was very awkward. There were no nursing staff on hand to help and the clinic did not have a single picture on the wall (I think the way a clinic is presented has a huge effect on the patient and the way they feel) I did not feel comfortable or welcome here. I requested to see the consultant (since that was who we had been referred to!) and he came and spoke to us briefly, looking at Hallie's face and talking about laser treatment as though it was not a necessity rather a cosmetic procedure and therefore did not have any urgency or importance. I didn't like the manner of the consultant (informal and relaxed but not in a friendly caring way) He never sat down with us and talked through how he would go about treating such an extensive port wine stain as Hallie's - he was actually quite negative and said extensive birthmarks such as Hallie's quite often did not respond to treatment. At one point I asked him about the inner ear (as Hallie has deep stains all over both her ears which go right down into her ear canal) the consultant just replied "oh well most patients choose not to have their ears done because you can't see them as much as the face". He really did not seem to understand our concern, not for Hallie's appearance, but for the thickening of her birthmark in the future and the effect this may have on her hearing, sight, mouth\speech and nose\breathing! I was not impressed at all and we went away feeling perplexed and very disappointed.
The mixture of emotions gushing through both me and Graham (daddy) were exhausting and the worse was yet to come as Friday 5th October was MRI scan day.
Friday morning started (for me) at 3am, Hallie's last feed, I had to starve her after then for the general anaesthetic procedure. We got to the hospital for 7.30am and sat waiting with what looked like another 30 children with their parents, it was packed in the waiting area. The children were there for a variety of operations and procedures, not just MRI scans. We didn't have to wait too long and at 9am Hallie was taken from me by a male nurse and they disappeared through some double doors into theatre. I wasn't allowed to sit with her while she was put to sleep as she had to be put to sleep in theatre where she was having her endoscopy. The ENT consultant performed the endoscopy as he was concerned Hallie had a blockage in her airway that may have been caused by swollen birthmarks growing on her tongue. Straight after this procedure in theatre, Hallie had to be put under general anaesthetic and transferred to the x-ray department for her MRI scan which took 90 minutes! The MRI scan was on her brain (to look for stains related to Sturge Weber Syndrome) and her throat and chest to look for malformations and generally check the size and shape of things to check everything was okay.
After just over 2 hours away from us she was brought out of the x-ray department on a large bed, crying. Her voice was croaky and she was understandably groggy.
The ENT consultant explained that he found Hallie had a floppy larynx and a narrow windpipe - which he had operated on and made wider with a balloon. "You may notice an improvement with her breathing now" he told us. Hallie is always very congested and makes loud grunting and snorting noises quite often when breathing. He also confirmed there were no birthmarks on her tongue although it was quite large. He needs to do an examination of her throat and vocal chords while she is awake and crying which he will do over the next few weeks. I imagine this will be very traumatic for Hallie but better to do it when she is a baby I suppose.
We now have to wait for the MRI results (7 to 10 days) (will feel like years) and we have an appointment with the ENT consultant next week to discuss his findings in more detail.
Phew! A lot to talk about but all good news up to now and Hallie is back to her normal self today, smiling and feeding but still has her croaky voice x
Saturday, 6 October 2012
Tuesday, 2 October 2012
Sunday, 30 September 2012
more photos!
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| not the most flattering of pics but these show Hallie's pws clearly |
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| big bro hitching a lift in Hallie's pram |
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| trip to the supermarket |
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| "I don't want to go back to sleep" |
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| you can see Hallie's tongue and gus on this pic - both of which I feel are large |
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| Hallie's first visit to the seaside, and dip in the sea! aged 4 months |
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| Hallie's new chair :o) |
big week ahead of us
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
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
Thursday, 27 September 2012
Thank u for viewing :oD
Thank u for viewing hallie's blog and taking the time to read my posts - it would mean so much if u could create yourselves a quick "google account" to enable u all to follow an comment on hallie's blog xxxxx
Wednesday, 26 September 2012
Monday, 24 September 2012
Hallie went to see a consultant in respiratory medicine last week. She was referred by our GP due to concerns that the port wine stain covers the whole of her neck and part of her chest and this can sometimes affect the heart apparently. The consultant was a very kind warm young woman, different to most consultants, and tried to reassure me that Hallie would be okay and she would get all the treatments/appointments she needed without delay. She sent Hallie for a chest x-ray - Hallie was a very good girl and stayed still for it!
Hallie also has to stay the night in hospital tomorrow so her oxygen saturation levels can be monitored to make sure her breathing is okay. Then, she is having her bloods and urine taken - they are being thorough, mainly due to her slow weight gain I think.
Hallie was weighed last week (aged 18 weeks) and weighed 9lb 14oz - I was pretty shocked, disappointed and worried, I felt disappointed that I hadn't managed to make her bigger with my milk and worried that it might be something serious linked to her PWS. She was born on the 50th centile and is now on the 2nd so has dropped significantly. I have asked the health visitor to refer her to a dietician so fingers crossed this is not a big problem and something that can be fixed with a bit of special fatty formula - she has been referred to ENT to investigate her large tongue and gums and her congestion problem she has had since 2 weeks old which could be making it more difficult for her to breathe resulting in her using all her calories up breathing rather than growing.
Anyway, I'll stop there as I didn't want this blog to be all doom and gloom!! I shall post some cute pics of my beautiful Hallie instead x
2 days old
first bath at home
daddy cuddle
hallie aged 5 weeks
bath time with her big bros
O-lay!
little ballerina xxx
Hallie also has to stay the night in hospital tomorrow so her oxygen saturation levels can be monitored to make sure her breathing is okay. Then, she is having her bloods and urine taken - they are being thorough, mainly due to her slow weight gain I think.
Hallie was weighed last week (aged 18 weeks) and weighed 9lb 14oz - I was pretty shocked, disappointed and worried, I felt disappointed that I hadn't managed to make her bigger with my milk and worried that it might be something serious linked to her PWS. She was born on the 50th centile and is now on the 2nd so has dropped significantly. I have asked the health visitor to refer her to a dietician so fingers crossed this is not a big problem and something that can be fixed with a bit of special fatty formula - she has been referred to ENT to investigate her large tongue and gums and her congestion problem she has had since 2 weeks old which could be making it more difficult for her to breathe resulting in her using all her calories up breathing rather than growing.
Anyway, I'll stop there as I didn't want this blog to be all doom and gloom!! I shall post some cute pics of my beautiful Hallie instead x
2 days old
first bath at home
daddy cuddle
hallie aged 5 weeks
bath time with her big bros
O-lay!
little ballerina xxx
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