After a holiday break from the blog, I’ve got lots to say! However, I thought it would be best to start with a Lil Z update, because a lot has happened in the first few weeks of 2013.
First, the seizures came back. We even called an ambulance on Christmas Day, although we ended up deciding not to take her to the hospital. It probably accounts for why we all look a little hot and flustered at Christmas lunch. After the Christmas one, she started having a seizure a week. The Neurologist has adjusted her medication and we’ve been seizure-free for 2 weeks now, so fingers crossed we are now on top of it.
Second, she started having problems with the NG tube. Before Christmas, it was going OK. However, the tube irritated the back of her throat and caused a build up of secretions, which made her cough, gag and vomit. After Christmas she vomited up her tube a couple of times and managed to pull it out a few more times. Despite the fact that pulling the tube out was obviously painful, she was considerably happier after it was out. And the distress levels were rising each time she had to have it put back. I imagine her nose and throat were getting very sore. Having to deal with it himself while Vegemite and I were away, QB was becoming very uncomfortable with constantly taking Lil Z into the hospital to have the tube put back in – saying he felt like it was child abuse. We agreed we needed to push the doctors for a Percutaneous endoscopic gastrostomy (PEG) as soon as possible.
But it was the third thing that really threw us for a loop. Lil Z broke her leg. Her femur in fact. No one knows how. In fact, QB wasn’t even sure how long it had been broken. She was distressed, but not as much as you’d expect. In fact, he even took her to the GP suspecting it was a UTI because she cried and screamed during nappy changes and was holding her legs in a strange way. Fortunately, they discovered it at the RCH.
Apparently, the doctors said that because she is not weight-bearing on her legs, her bones may be more fragile than normal. So, she may have broken her leg simply by getting it caught in the cot bars and trying to pull it free. She’s also been referred to an Endocrinologist to see if her fragile bones might be caused by a vitamin deficiency or hormonal imbalance.
She needed surgery to set her leg and in that, QB accomplished the impossible. He managed to get the Gastroenterology team to agree to put in a PEG at the same time as the Orthopedics team set her leg. This meant she only had to go under general anaesthetic once and that she got the PEG much quicker than scheduled. Apparently one of the biggest problems QB had to overcome was that Gastro only operate in the morning and Ortho only in the afternoon – and neither was willing to change their schedule. So, Lil Z had her surgery at lunchtime. It was only through QB’s perseverance and the support of one of the doctors that two surgeries were done at the same time.
It nearly killed me to be overseas when Lil Z was having surgery. Words cannot begin to describe how awful it was. But all went well. Lil Z is only expected to be in her cast for 3-4 weeks and she is much happier with the PEG than with the NG tube.
So, I returned home to a very different situation. I didn’t even know how to pick up Lil Z or change her nappy since she’s now in a big pink cast from her hips down to the toes of her right leg. I had no idea how to use the PEG (turns out it’s just like the NG tube) or how to care for the entry site. It was not a good feeling to have other people (QB and the nanny) explain to me how to care for my own daughter. But I’ve learned, as you do, and now I’m pretty much up to speed with her care.
All isn’t perfect of course. She is frustrated and uncomfortable in her cast. And the secretions in her throat haven’t disappeared, so she still vomits almost daily. But the cast will be gone soon and I’m hopeful that the PEG is the first step in getting Lil Z to a happy place in 2013.