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
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