Thursday, October 12, 2006


Same-same news. Sheena was in hospital again for the past four nights. She was admitted with her gastro, but put in neurological ward due to her infantile spasms. She was dehydrated and not able to take in her meds, so she got all of that intravenously.

Now our Sheena is getting chubby. Really chubby. The kind of chubby that makes putting an IV in near impossible. First the resident tried twice, then the register tried four times, then someone from Intensive Care was going to give it a go, but there was a miss-communication (otherwise known as a stuff up), and she was sent to pre-op and given a General Anestetic so an anestetist did it while she was under gas. Two more pricks later, and she finally had her IV in.

Sheena can scream. She was so distressed, and all the procedures were horrible for her. I was there for the 6 attempts at an IV, an SPA (needle in the tummy, which also didn't work), a catheter, 2 blood tests, going in and out of the gas, having a feeding tube in and the million of other things that they do in hospital that babies don't understand. Even taking her temperature during the 4 hourly obs made her cry.

Anyway, she recovered from her gastro after having a lot of gastrolite through the feeding tube. Unfortuntately, during her stay we still noticed several spasms, so they've increased her IS meds to a ridiculously high dose. Her whole brain is working differently, and she is going through a stage of adjustment. Her whole reality is changing as her cerebal gets less irritated. She is really still, like a newborn when she is settled, and she's completely out of control when she wants food or a nappy change or whatever, there is no middle ground. I've set up a bed for her in the living room so that she can lie with us, but she is not really with us. Just wants to lie in peace, or get a cuddle and a massage. She looks miserable most of the time, but it is possible that she's just confused with what is happening. As the days went by in hospital, the Doc's looked more and more somber as they realised how bad Sheena was. She has screaming episodes like a crack-addicted baby, and then really out-of-it times.

It is another wait and see stage, and hopefully she'll adjust. While she is on these meds for another week or two, we have a nurse do a home visit every second day to check her blood pressure. I check her for diabetes everyday using a cotton wool in her nappy and then a dipstick. Thank god I suspended work.

She is now off her solids completely, but still wants milk. Her weight is staying the same at 8.3kg, but she is swollen with fluid rentention - hence miss chubba. She still looks remarkably cute, and when someone else is holding her, I love seeing how beautiful she is from a distance, or from a different angle.


Sharon said...


I have been watching your story unfold -- well accidentally, really. We are living parallel lives. My son was born on January 10, 2006. He has Down Syndrome. He was diagnosed with infantile spasms on August 17th. We are using ACTH now. I wanted to say hello, because I know EXACTLY what this feels like... I will pray for your daughter. She is beautiful. Feel free to e-mail me if you want to chat about this, or whatever.


Shelley said...

All I can say is that I know what that rollercoaster of the ups and downs in hospital can be like - although not from infantile spasms. You are all in my prayers especially Sheena - I hope that things settle down for her soon.

Michelle said...

How frustrating this must all be. I can only imagine how it was for the both of you going through all those IV tries...poor Sheena! She's in my prayers.