Monday, June 28, 2004

Back to hospital

23rd June

After a couple of frustrating days waiting, we finally got back into hospital to start the steroid treatment.

The conditions here are not nearly as nice as we have had in the past. We are in the same hospital but a different ward, which is much busier, and we are in a shared ward. We are in the 'neuro' ward where there are six children per room as opposed to four in the oncology ward, and the parents have to sleep in a separate room. Kara would have liked to stay here with Amelia, but it wouldn't work with Sophie, so I will stay here while Kara looks after Emma and Sophie at home.

We started the intravenous Methyl prednisolone at 17:30. The dose is 20g/kg for six hours every day for five days. The first one has gone well. We were warned of a host of potential side effects, from high blood pressure problems to total physical collapses, but we haven't experienced anything bad yet.

The only change I noticed was that Amelia woke up without matted hair. Most mornings Amelia's hair is a tangled mess of knots and craziness which takes a lot of hairspray and careful brushing, but this morning it was almost knot free. I hope that this is sign that she is sleeping soundly, but it might just be the new conditioner!

25th June

We got to know a little girl called Bronte today. Bronte is three and a half and suffering from epilepsy of some sort. It seems to be quite severe at times and apparently she has grand mal seizures. She was a very sweet little thing and a bit manic from the medication she was getting. When she was very manic she couldn't stay still and ran around the ward chatting to the other kids and trying to get in bed with them.

24th June

It is quite a sobering experience being in the neurology ward. There are a wide range of problems here, and many of them make Amelia look lucky. There is a natural bond between the parents here and a lot of discussion about conditions and treatments. It is all very interesting, but like watching a horror movie, and sometimes I would rather not know and I am worried about Amelia listening too. Too much for such a young mind.

25th June

We have been here for a while now and Amelia seems to be much the same. The only change I have noticed is that her tantrums seem worse and longer lasting. This may just be the new environment, which would be challenging for any four year old. Amelia is constantly attached to a drip and she is continually prodded and poked (but only two needles so far) and observed. Visitors seem to unsettle her even though she says that she wants them. Her neigbourhood friend Georgia and her mum dropped in for a visit during a terrible tantrum the other day. The tantrum of screaming and kicking continued for the 30 or so minutes while they where here and didn't stop until well after they left. Poor Georgia was very distressed by the hospital scene and apparently cried when she got home. However, when Amelia described the visit to Kara over the phone, she said the visit went well!

26th June

Last night Amelia was very settled, much more than any night at a hospital yet. She was quite normal for most of the day too. She made friends with a girl called Cassandra early this morning and spent a lot of the day with her. Cassandra is seven (and about the same height as Amelia), she is here visiting her brother who is about four and seems to be very sick and disabled. Watching the two girls play really emphasised how much better Amelia is today. Her balance is improved to the point where she did not fall over when Cassandra walked into her and she could run around the fairy garden at a reasonable pace. Her language seems better too, the words are coming out much faster and more clearly. In the morning Amelia was having trouble finishing a sentence because she went so slowly that Cassandra would be bored and interrupt, but by the afternoon they were having normal conversations. The doctors and family have also noticed the improvement. Today is the fourth day of the steroids and a milestone in Amelia's recovery.
The activity of the day seems to have caught up with her now, it is six o'clock and despite the din of the other four families in our room, she has just fallen asleep.

27th June

After Amelia fell asleep at six last night, she only slept for a little while and then woke up in a foul mood. She finally got to sleep at about nine o'clock after screaming and kicking for hours.
Fortunately Amelia woke up this morning in a good mood, and today was a good day. The methyl pred. seems to make Amelia quite hyperactive and euphoric at times, as if she had drunk half a dozen beers.
Thomas, Amelia's cousin visited today and cheered her up quite a lot. Thomas' dad, Paul dropped in with him. Paul had not seem Amelia for over a week and he was quite struck by the improvement in her condition. He really noticed her improved balance and improved mouth. In particular he thought Amelia's bottom lip was much more relaxed, which is something neither Kara nor I had noticed. We suspect she had been tensing it to compensate for tremours.

28th June

Last night was another good one. Amelia went to sleep without any trouble despite an infusion of ranitidine (to settle her tummy) and the final removal of the canula during the night. This morning was a happy one too and Amelia was quite chirpy and cooperative, but the mood was spoilt by our first oral dose of the steroids. The dose arrived in four horrible tasting pills which were painfully swallowed, one by one. We tried different methods and the last pill was taken covered in strawberry jam and washed down by milk. A year of four pills a day sounds like a harsh sentence.

Amelia recovered from the yucky pills quickly and was good for the blood test that followed shortly after. We were discharged late in the morning and finally got home. We have numerous checkups and blood tests with various doctors scheduled, but we are hoping that we won't need to be hospitalised again.


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