Friday, September 29, 2006

Home from Hospital

Back home after 3 nights in hospital with Sheena. She is a very sick little girl, and is going to be in the wars until her infantile spasms are under control.

She was admitted, because she looked like she was in a coma, and was non-responsive. She was really out of it, and she also had a positive UTI from a urine test. She was in the neurology ward, and they did 24 hours of video EEG monitoring. Poor Sheena looked like she'd had brain surgery, because they had to bandage her head to keep all the monitoring equipment in place.

The results are pretty bad really. I had to hit a button whenever I thought she was having a seizure, and then afterwards the scientist would match the video with the EEG report to see if there was epileptic activity. The good news is that her (very frequent) leg raising and arm flapping are not spasms. However her hiccup episodes are definitely infantile spasms. She had 6 clusters of them over 24 hours. Her brain is basically sick with hypsarrhythmia, and she is now on pred-mix to try and get it under control.

Hospital is an odd place these days. There are so many layers of professionals that it is unbelievable. The nursing staff are basically drug administrators, and there was very little support from them for the children's basic care - that is the parents job. Sheena had 8 doctors supporting her on the ward. For Neurology (from top to bottom) she had her Consultant, the on-duty Ward Consultant, then Fellow, then Registrar, then Resident. I liked the Registrar the best - he was very thorough in explaining things, and very empathetic of how full-on all this is to work through. She also had 2 cardiologists and her Peadiatritian. It was a very busy 3 days getting results and plans from all these Doctors.

Pred-mix has a long list of serious side-effects, however the ongoing hypsarrhythmia is worse. She is going to have reflux, she is going to be hungry, she is going to have fluid retention, and get really bloated. More seriously, I need to test her daily for glucose, closely watch her for any signs of infection, as her body's stress receptors will not be working properly and won't fight off infections properly. They had to get the Cardiologists involved to check that her heart was stable for commence the new meds, and her Pead to give the all clear that there was no kidney infection due to her UTI's.

It was hard to sleep - especially the 24 hours when Sheena was getting taped. We couldn't even dim the lights and she had to stay in her cot so that they could capture her on tape. In the middle of the night she wouldn't settle, so I ended up in the cot with her at 2am in the morning, after stroking her head for 2 hours with no success. Thankfully the hospital cots are on the large size - and sure enough it worked, and we both fell asleep exhausted. The following day, I had a sleeping tablet and slept for 2 hours in the arvo while my mum looked after Sheena.

I had the week off work naturally, and for the next month while Sheena is on Pred-mix I don't think I'll be able to. It depends on how she reacts. So far she has been really chucky. Constantly spitting up her milk and solids. Crying a lot and looking very miserable. I remember when I was pregnant reading theories on how to raise children - like 'attachment parenting', so that you could best ensure that your kids would grow up with good self esteem. Well, with all the crap that Sheena has gone through in her eight months, she'd think that no one loves her.

She has a box full of medication to take. I remember when she was 6 months old, and on nothing but breast milk. I used to be scared to give her a panadol. I still am actually - somehow still worried that I'll become a panadol mum!


Pranay said...

Wow You are so cool for being so interested in the treatment and other things at the hospital. Really commendable.
Little sheena looks very cute, wish her all the luck.
she's so lucky to have you.
you are too brave.
carry on super mom!!!

amy flege said...

Poor baby. we will keep thinking and praying that this will subside..sure hope the new med works for her.
lots of hugs!

Christy said...

No one love Sheena, you've gotta be joking. That girl is SO LOVED that is how her marvellous parents found out about this horrible condition she has. I've heard ont he rumour mill that you are the most amazing mother! In the words of "Pranay" Carry on Super Mom!

I'm so glad "Sheena Time" is back up and running, I missed hearing about your daily events. Love you guys so much

Shelley said...

I remember worrying about that when Hannah was so sick after her heart surgery - needlessly I now know. All your love is bound to make the difference. I met a woman at NSW DSA babies Day whose little boy had suffered with infantile spasms so maybe when you are off the worst of the medical merrygoround if you want to see what other parents have done then you could contact them - her little boy is called Sebastion and is absolutely adorable. You and Sheena and all the family are in our prayers - I hope things adjust soon for you.

Michelle said...

Oh I'm so sorry to hear Sheen has been in the hospital and it was such a miserable experience with hardly any sleep. Many prayers are being said for Sheena!