19 December – paediatrician appointment
I had expected a decision on the PEG to happen at this appointment, but it didn’t. In hindsight, I wished I’d asked why they weren’t moving ahead more rapidly with the PEG as everyone involved in her care seems to feel that is what is best – and inevitable. The Prof, however, suggested that he reveiw Lil Z again in 3 months and then refer her to Gastro. This means that Lil Z is unlikely to get a PEG for 6 months or more – instead she will stay on the NG tube. I am now really kicking myself for not asking. I’ve since spoken to Lil Z’s speech pathologist at the RCH, who is going to follow up for us. However, with the Christmas holidays upon us, its going to be a bit of a wait for everyone to return to their offices, etc.
Otherwise, the Prof was impressed with her weight gain – 2kg in a month! He was concerned about her eyes however – especially as she kept rubbing them during the appointment – and said to make sure she got the corrective surgery as soon as possible. He said that scratches on her eyes can be very painful and could be the cause of at least part of her general unhappiness and unsettledness.
15 December – flexor spasm seizure
This was the first seizure in some time where Lil Z was fully awake when it began. Most of her seizures lately have been when she’s asleep or nearly asleep. There was no warning either – one minute she was cheerfully bouncing in her chair, the next she was having a fit.
Her timing wasn’t good as Vegemite was due to perform in the Nutcracker later that morning and we’d arranged for Lil Z to be looked after by a new babysitter. Still, the seizure stopped after we gave her Midaz and lasted her usual 10-15 minutes. In the end, she slept for most of the morning and the babysitter actually coped quite well – although I don’t think she let Lil Z out of her sight.
13 December – NG tube re-inserted
I was travelling in Papua New Guinea for work, so QB had to deal with this one on his own… with a bit of help from the nanny. Lil Z managed to pull the tube most of the way out in the morning and QB had to remove it and take her to the hospital to have it put back in. On the bright side, they’ve put in a smaller tube, which seems to irritate her less.
7 December – opthalmologist appointment
If there is one department that is ALWAYS running late, its the Eye Doctors. So, we waited for well over an hour before being seen – by the registrar. He took down the basic details, tried to get Lil Z to track a toy, and then sent us back out to wait for the nurse to put drops in Lil Z’s eyes to dialate her pupils. It took a very long time to actually see the eye doctor (actually, he’s an eye professor) but he was worth it. The main conclusions from seeing him were:
- Lil Z has typical CVI. On good days she can see quite well, on bad days her world is blurry and she shuts it out. He said to take advantage of the good days as much as possible. And that her vision is likely to improve with age – which is very good news indeed!
- She doesn’t need glasses (how he can tell this, I haven’t a clue). Her eyes aren’t symmetrical (she has a lazy eye – just like QB did as a child) but he doesn’t think that it is impacting her vision sufficiently to warrant being surgically corrected.
- Her bottom eyelashes curl inward and scratch the surface of her eyes. This is a serious problem as it causes her pain, affects her vision, and could lead to infections. So, she needs surgery soon to correct it. He said it was a fairly minor procedure and that she would be a “new girl” afterwards. I’m keeping my fingers crossed.
So, now we’ve been referred to Plastics (who will operate on her eyes) and to Vision Australia (again). And the best news is that the Eye Prof doesn’t think she needs a follow up appointment for another year. Which will save me a lot of time in his waiting room…
6 December – flexor spasm seizure
It was the new nanny’s first seizure, although I was home at the time, so administered the Midaz myself. The seizure was the same as she’s been having lately. It lasted around 10-15 minutes and required Midaz but no ambulance.
5 December – visit to the dietician
The dietician was impressed with Lil Z’s weight gain. In fact, she’s put on 1kg so quickly that they decided to reduce her feed. She’s going from 1,200 calories per day to 1,000 calories – which still seems like a lot for such a little girl.
The dietician also thought that Lil Z would need a PEG over the longer term. She discussed how it was inserted and cared for and emphasized that not only were they often a good thing, but that many children returned to oral feeding after a time on PEG feeds.
1 December 2012 – NG tube reinserted
When I went to test Lil Z’s tube on Saturday morning, I couldn’t draw anything. The test requires you to draw a small amount of fluid from the tube and test its PH balance – an acid result means that the fluid has come from the stomach and the tube is in the right place, an alkaline result suggests the tube may be too high or low. In this instance, however, I couldn’t draw anything. In fact, it was very difficult to pull out the plunger on the syringe at all. QB and I tried a few different things to try to get it to work, but it didn’t. So, off QB went to the ED with Lil Z to have the tube checked. It turns out it was too high, so the tube had to be removed and reinserted again. Poor Lil Z…