seizure activity – 27 March
Not quite a full blown seizure, but Lil Z had flexor spasms this morning. In between the spasms, she was aware and distressed. Fortunately, it only lasted around 3 minutes and didn’t require Midaz.
Kidney and bladder ultrasound – 20 March
This was the world’s quickest ever appointment – well done to the Medical Imaging Department at the RCH. In and out in just half an hour!
Although the scans have to be reviewed by her Paediatrician, the technician said that her kidneys, bladder and spleen all looked completely normal. The scan was really just a precaution after her UTI, but it was good to get confirmation that all is well.
For her part, Lil Z appreciated the specially warmed gel – and promptly fell asleep as soon as the scan started.
Bilateral epiblepharon repair – 18 March
If you’re wondering what a bilateral epiblepharon repair is, you’re not the only one. I thought the fact that all the nurses kept asking me “you know what surgery they are doing today” was one of those stock questions they have to ask, but it turns out they’d never heard of the procedure either and were trying to figure out what it was! So, for those non-opthalmolgy geeks amongst you, it is repairing her lower eyelashes, which grow into her eye, by removing a small line of skin under the eye and then stitching them up, which pulls the ingrown eyelashes out to a position where they should be.
Apart from being asked to come into the Day Procedure Unit early because we were first on the list – only to be moved down to third and therefore obliged to wait for 5 hours – everything went smoothly. Lil Z was a bit panicked when she woke up because her eyes were bandaged so she couldn’t see. I was rushed down to the recovery room to provide comfort and she was given a big dose of painkillers – and she promptly fell back to sleep.
A bit later up in the Day Procedure Unit, she gave me a scare when she went completely rigid, began gritting her teeth together and her lips turned a bit blue. The nurses immediately gave her oxygen, she seemed to snap out of it, and her SATS went back up into the normal range. Not sure if it was a seizure or something else.
While on the Day Unit, we also had a chance to see the Paediatric Registrar (and our beloved Paediatrician, who popped round to say hello) and discuss the recent bout of screaming and unhappiness. The Reg gave Lil Z a once-over and couldn’t find anything of concern (no joint pain, broken bones, swollen organs, constipation, or signs of a virus). She suggested we try to do a “clear catch” urine sample – essentially giving Lil Z nappy free time and trying to “catch” a sample in a cup. We reckoned it would be easy because she’d just been rehydrated after fasting all morning. No such luck. After hours of nappy free time, I finally put her nappy back on so I could give her a cuddle – and she immediately went in her nappy…
We also saw the Gastrostomy Nurse while we were there. She had a look at Lil Z’s stoma and confirmed there is too much granulation and prescribed some steroid cream. Oh, for those non-PEGies amongst you, that means that the hole where the tube goes into her tummy (stoma) is building up too much extra tissue (granulation) and the cream will get rid of it. See the vocabulary I’m learning! Apparently, we want the stoma to look like a pierced ear… She is also going to look into where Lil Z is on the list to get her Mickey button. The Mickey is kind of a “pimp my PEG” upgrade that is flush with Lil Z’s skin instead of having a tube dangling out of her tummy. Considering the number of times I’ve caught the tube on something, I think the sooner we move to a Mickey the better!
So, it was like Grand Central Station in our room, but that was OK. At 6.30pm that evening, a full 12 hours after we’d first arrived, Lil Z and I finally made our way home.
Bad weekend – 16 & 17 March
I only include these two days because there was SOMETHING going on, we just couldn’t figure out what. On Saturday, Lil Z screamed pretty much the whole day. She then calmed down, did two massive vomits, and went to bed without much fuss, sleeping through the night. In the morning, she woke contented and then suddenly started screaming. The screaming went on for most of the morning. She would only be comforted by QB and me holding her. She was very sleepy and spent the rest of the day on Sunday sleeping and crying.
Seizure – 13 March
Flexor spasm seizure in the morning. It lasted for the usual time of 10-15 minutes. I gave her Midaz and she came out of the fit within 5-7 minutes, so no need for an ambulance. She was extremely sleepy for the rest of the day.
Seizure – 6 March
Another flexor spasm seizure. I wouldn’t have called an ambulance except that 5 minutes after I’d administered Midazolam, she was still fitting as violently as before she’d been given the rescue meds. She had come out of the seizure by the time the paramedics arrived, but was trembling (something I hadn’t seen before). The spasms during the fit also caused her PEG to bleed. It was a quick visit to the Emergency Department – she was checked over by the doctors, briefly monitored (her SATS were good for a change) and then we were sent home.
Trip to the Emergency Department – 5 March
After Lil Z vomited blood in the morning and more blood appeared in some flow-back in her PEG tube, I ran Lil Z into the RCH to make sure that there was nothing more serious at play. The doctors were unsure what had caused the blood. There could have been a number of causes, including the fact that her frequent and violent vomits (caused by a virus) could have caused some bleeding or her PEG rubbing and irritating the inside of her stomach, or an ulcer. They prescribed omeprezole to lower the acidity of her stomach and allow whatever caused the bleeding to heal.