We are unexpectedly back at PMH this weekend. Charlotte was doing well on Thursday and Friday and went to school. Then on Saturday morning she woke up with a headache and was very sleepy. She was with Kevin, so he called the oncology staff at PMH and they said to give her a children's panadol to see if that helps and call back in half an hour. She had the panadol and then threw up just as he was going to call the hospital back. They said to bring her in, so they can check her over. Luckily Rachel was working in Joondalup, so met them at the hospital. A bit quicker to get there from Joondalup...
Charlotte was very tired and didn't look well. On the positive side We noticed her left eye was closing a lot better and her mouth was a lot straighter on the left side. While waiting for the oncology doctor she threw up again. The doctor checked her over and did all of their normal tests. He was worried, as the symptoms could be from either decreasing the steroids or a fluid blockage around the brain or swelling of the tumor or it could be all of them. He ordered an urgent CT scan and Kevin had a turn with her in the CT scanner. The scan showed what they thought could be a tiny bleed in the tumor, which can happen and normally resolves itself with this type of tumor. As they can't operate on it, there is no other treatment for a bleed. It also showed more fluid around the brain, as the brain has already shrunk slightly from the steroids. Scary how quickly the steroids have taken effect.
They weren't sure if there was a fluid blockage, but didn't think there was, as she would have more symptoms like having a stroke. We met the neurosurgeon, who explained that we may have to put a shunt in to drain the fluid away from Charlotte's brain if it was a fluid blockage. This is done under a general anaesthetic. A hole is drilled into her head and a tiny tube is inserted and is then run through her body just under the skin down into her stomach where the fluid can continually drain from her brain. It relieves the pressure which causes the headaches and throwing up, etc. They didn't want to rush in and do it until they were sure the problems were from a fluid blockage. No point possibly creating more problems if we don't need to, as the shunts can become infected over time and the least amount of surgical procedures the better, as every time surgery is done there is a risk it may not go to plan. Again, a positive thing on the scan was that the tumor has decreased in size, due to the radiotherapy treatment and possibly the Vorinostat and steroids.
So we were admitted to the neurosurgery ward where the staff are experienced with looking after patients like Charlotte and can check on her constantly. Unfortunately she had to have an IV inserted into her hand again and some blood taken. Charlotte wasn't allowed to eat anything in case she had to be rushed in for surgery. She was very hungry too, being on the steroids. She was put back on the steroids on quite a high dose to see if that had a positive result by IV, which unfortunately made her throw up every time they gave her a dose. We were in the room directly opposite the nurses station and they checked on her every hour and tested all her blood pressure, reflexes, etc to make sure she didn't deteriorate. And we waited and waited. To start with her blood pressure was very high and her pulse rate was very low. A normal pulse for a child is around 80-90 bpm. Charlotte's was in the low 40's. We were very worried for a couple of hours as she didn't seem to improve at all and looked to deteriorate every now and then. She was extremely lethargic and it was hard to wake her, which worried everyone of course. We were told if her pulse rate went under 40 or if she couldn't be woken up or if her blood pressure went over 130, she would be rushed straight to have a shunt inserted. So we watched those numbers go slowly up and then drop a bit, then slowly up. It was torture! Thank goodness she eventually started to reach slightly better numbers and the doctors allowed her to have something to eat at about 7.30pm.
Aunty Sam and Grandpa raced out and got her favourite pasta from Sienna's, as there wasn't much open around the hospital by then. She ate and ate and ate and her pulse rate soared and blood pressure slowly dropped. We think she was extremely excited to be eating. She seemed to do really well after that and started to look better. The staff were feeling a lot more relaxed.
Then we took her to the toilet for the first time since she arrived at the hospital. When everything was plugged back in after, her blood pressure had increased again and her pulse had dropped too. So we waited again. It was a long night with staff checking her every hour and her numbers going up and down all night.
Sunday morning Charlotte woke up very hungry and a lot brighter than she was on Saturday, but wasn't allowed to eat in case the neurosurgeons wanted to operate. The oncology doctor came around first and said he was happy with how she was doing and will book an MRI for as early as possible on Monday morning, so we can get a much better idea of what was causing the problems. The MRI shows up a lot more than a CT scan. He was happy to let her eat again, as the steroids would be creating problems if she can't eat and she seemed a lot better when she can eat. We had to wait for the neurosurgeons ok though as well. They came a bit later and checked Charlotte over and said they were happy for her to eat too. They said that after looking at the scans and checking Charlotte they didn't believe that the symptoms were from a fluid blockage, so she shouldn't need a shunt. This could of course change later on, but they believed it was a very small possibility.
So the eating frenzy began again mid morning Sunday. She was a lot brighter today (Sunday) and had quite a few visitors. I did notice, however, that her tongue and left hand have started a little bit of a shake again and the left side of her mouth is a bit crooked again. Bloody steroids! We have an MRI booked at SCGH for 10.30am Monday and once we know the results of that the doctors will make their decision on the next step. We are hoping that Charlotte can still go to radiotherapy and continue on the Vorinostat in the afternoon. More waiting though to see what happens.
Another update once we know all the results tomorrow ...
