Tuesday, 8 September 2009

Our First Day at Alder Hey

After our discharge from Warrington General in May after Bethany's bout with bronchiolitis, we had Alder Hey to look forward to. A very lovely doctor on B11 had managed to get our November Genetics appointment moved forward to the end of June. Lovely. That took away some of the stress of waiting. Of course we had more than just genetics to contend with; there was also Craniofacial and Cleft Palate. Fairly overwhelming.

We approached these appointments almost in awe. Almost as if Alder Hey Children's hospital was a magical place that would diagnose and cure Bee on the first day. Everything would be solved the minute we stepped through the door. Of course life isn't like that and Bethany's problems are far more complicated. Rationally we knew there was probably only a limited amount we would discover in the first set of appointments and even less that would be done. Hospital waiting lists are notoriously long and Alder Hey, as the regional children's hospital, is no different.

Our first appointments were with Craniofacial and Cleft Palate, both on the same day, which was handy as we live aways from the hospital and don't drive. We both my Mum and Foz's Mum along as of course they were concerned about Bee and wanted to be a part of things. I was extremely glad in the end as it was a very intimidating experience.

Craniofacial was first. Of course I'd been so focused on Bethany's appointment that I hadn't stopped to consider we would be encountering other poorly children in the hospital so I was completely unprepared for some of the things I saw walking the corridors at Alder Hey. It made me very grateful that Bethany doesn't have things like cancer, facial disfigurement and worse. When our appointment time came we were ushered into a room with two chairs sat against a wall and were motioned to take them. Facing us, along the opposite wall, were nine (yes nine) doctors and health professions. All looking very serious and sitting in complete silence. It was like Dragon's Den, only worse. The lead doctor introduced himself as a brain surgeon (mucho
impressed) and then introduced the rest of the room. There were other Craniofacial staff there, someone from Genetics, someone from Cleft Palate, a Maxilliofacial surgeon, a speech therapist and various others with various positions within the hospital. Mr. Brain Surgeon was very nice, very friendly and explained what he was doing as he was doing it. He had a feel of Bethany's skull and we were asked an awful lot of questions about Bee's birth and medical history by various people in the room. Others held whispered conversations behind their hands whilst staring at Bee in what I think they thought was a surreptitious fashion. I wanted to tell them all that if they had something to say about Bee they should have the courtesy to say it aloud but I restrained myself, they were only doing their job.

In the end the diagnosis was no Craniosynostosis and no abnormal skull. Her head is fine, albeit a little flat at the back from spending so much time lying down. But what good news! I suddenly felt a ton weight lifting from my shoulders. We'd been so worried about brain damage, possibilities of surgery, all kinds. It was a tempered happiness though as we knew there was more to come, we still had Genetics at the end of the month. Whilst we were in the appointment we explained how Bethany doesn't seem to gain weight, no matter what we try. The Genetics lady in the room managed to book us in for an ultrasound to check out Bethany's bladder and kidneys that afternoon, just to be safe.

Next was the Cleft Palate department, we were due to see the surgeon. He had a good look in Bethany's mouth and asked some questions about her feeding etc. The decision was that Bethany was managing ok and an operation may not do her any good as her hypotonia could be the reason for her swallowing problems. Another appointment was scheduled for December to see if the possible cleft is affecting her developing speech. Children with Submucous clefts can often develop nasal-sounding speech. If it turns out it is they will probably do an operation.

So all-in-all it was a fairly productive first day at Alder Hey although we're both starting to feel a little frustrated. We know there is something the matter with Bethany but don't seem to be getting any further to a proper diagnosis or treatment of any kind. I think Genetics at the end of the month is going to bring the real answers, although that in itself could take a long time. Also to look forward to we had ENT the following week, which was the result of our referral from Warrington ENT department. An awful lot of appointments, in June we had 12 split Warrington Hospital, Alder Hey and the local CDC but we would do whatever it takes to get Bethany the help she needs.

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