Little Fish also had a check up appointment yesterday. Same surgeon. This is the appointment she should have had last week. In my innocence, I had assumed someone with sense had rearranged her appointment so that it would coincide with Mog's. But noooooo. Since I had still had no paperwork telling be about the appointment by Monday, I phoned the surgeon's secretary to find out what time she would be seen. Imagine my delight at being told her appointment was the first of the day, at 8.50 again. Mog's appointment was not until 11.30, our carer was arriving late as she had to see to another child first, so getting to hospital for that time was really not feasable. Nevermind, we will race as much as we can, and I will have time for a nice hospital breakfast between their appointments.
We made it. Just. Two minutes to spare. I suppose it was therefore inevitable that the notes would not have been sent down to the outpatients department for some reason. However, eventually Little Fish's notes arrive, and we are sent down to the X-ray department. I heft her onto the table, strip her off, don my lead apron, deny any possibility of pregnancy, and hold her down for the vvzzzzt of the X-ray machine. Redress her, steer both girls back to Outpatients, and wait to be called. Little Fish likes the orthopaedic hospital. The little shop which sells chocolate is just next door to outpatients, and the doors are automatic. I therefore spend considerable time chasing her back into the department and foiling her attempts at shoplifting.
Eventually we are called in to see the consultant. We talk about Little Fish, and then I head back to reception. Mog's notes have arrived, and she does indeed need an X-ray (I could have told them that, in fact I did tell them that). So, back down to X-ray, same radiographer, same procedure. We've only been away an hour, she still has to ask me again whether I might be pregnant. I tell her I've been a little busy, re-don the lead apron, strip Mog off, hold her down. Vvzzzzzt! Hold on, it hasn't gone low enough, they can't see the bottom of the pins in her femurs. Vvvvzzzzt again and we are done. Just in time - Mog is giving a fine example of why we don't lie her flat on her back.
Back through to Outpatients, back to the receptionist. Do I have time to visit the canteen? No, the surgeon would like to see Mog next. Or she could put another child in but then we'd have to wait. No thanks, I'll survive without coffee for another half hour or so.
We see the surgeon, he pronounces Mog healthy, and we are released for another three months. Well almost - you'll notice I didn't mention what he found when he examined Little Fish.
He asked me if I'd noticed anything about Little Fish which was concerning. I pointed out a rib which had become more prominent in the past couple of weeks, and her left foot which is now very flexed, no matter how we splint it. He showed me the X-ray. Little Fish's hip is completely dislocated. As she has no feeling in her legs, this hasn't been causing her any pain. This is a blessing, since it could have been very uncomfortable. And a curse, since a little pain might have warned us that this was happening. There were no obvious signs. Now the surgery Mog has just been through will probably not work for Little Fish; Spina Bifida works differently to Cerebral Palsy and I'm still learning. So instead he wants to book Little Fish in for some exploratory surgery - inject dye into the joint and see what is going on. He will at the same time snip the tendons in her feet which are causing it to flex. And he will refer her to the spinal consultant who will review her spine as this is likely to be causing the rib deformity.
This has come completely out of the blue. In 2 weeks' time Little Fish has surgery scheduled - a long awaited operation to fit a feeding tube directly into her stomach to replace the tube which has lived up her nose since she was a baby. A minor op, but with Little Fish's breathing problems, no anaesthetic is minor. We had thought that this would be the only surgery she would need until she is about six, when she will have various different surgeries to give her a semblance of continence. And now we learn she'll have to have another anaesthetic soon to take a look at her hip, potentially followed by more surgery to put it right. Whilst I would be happy to leave it out as she does not walk or take weight, and she has no feeling so is not in pain, there is a problem as her other hip is firmly in socket. One hip in and one out is not good news - it will twist her pelvis and her spine will twist to accommodate that - this is probably what is causing her rib to stick out, and what causes the lop sidedness people have previously assumed was just poor positioning.
So for now all we can do is make sure that Little Fish's position is good whenever possible. Adjust her various chairs to make sure they support her properly, look at how she sleeps at night, watch her when she is wriggling around on the floor. She can fold those floppy legs backwards and upside down and right around. Probably not a good thing to be doing.
Tia
1 comment:
Oh goodness gracious, Tia!!! Some days are just TOO much with our little guys, huh? I'm sorry this has come out of the blue! That is sometimes harder to deal with than the hardships you KNOW are on the way.
I pray there is something that can be done withOUT doing surgery to that hip. I know it's unlikely, but it's worth some prayer anyway!
Alesha
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