Sunday 30 August 2009

Well it is the night before her surgery and Katriona is asleep in our bed blissfully unaware of what is planned for tomorrow. I managed to take some photos of her this afternoon, but didn't manage to coordinate her having photos with the rest of us. I got a bit upset about that earlier.

We are feeling apprehensive and stressed. We still aren't really sure of so many things. We don't have the details we need about risks, but don't have the time to delay in her having the surgery either. We need to leave the house at 6am tomorrow and still feel we have so much to organise before then.

The enormity of it all has finally dawned on me. I have never been away from Kiffin and Keira before apart from Kiffin having had two sleep overs in the last year. I have never been away from Keira, ever. A whole week seems like such a long time.

Kiffin admitted to her Nanny (my mum) tonight that she was scared of Katriona's surgery because she thought that Katriona's brain was being removed and she couldn't work out how she would be able to live without a brain. Poor thing. What a dreadful worry it is for her too.

I will update tomorrow as soon as practical. Send your love to Katriona tonight and tomorrow.

Thursday 27 August 2009

Today we went to the pre admissions clinic. I don't know what I was expecting, but it wasn't what I thought it would be.

Katriona was weighed, measured and had a bloody sample done for cross matching. I had a chat with an anaesthetist, not the one who will be on for Monday though. She told me that if we are up first, which is what Dr Ray said, then we will need to be at the hospital at 7am! Bloody hell! She also said that if Katriona's cough got worse they would cancel her surgery. I hope she doesn't get worse because that would be awful, her surgery would not be for another week which is too long away. Everyone who see's her seems to think that because she is happy and smiling and so contented that therefore things aren't that bad. But compared to what she is usually like, she is really beginning to spiral down. She isn't as smiley as she was, she isn't as content as she was, she isn't feeding very well (she has actually lost 400g since last Friday) and she is not sleeping as well as she has been either. I can see the decline and compared to how she was she is getting worse. But compared to Keira as a baby she is great. But it should surely be based on her and not her compared to another baby?

Wednesday 26 August 2009

We went to see Hedley again today. He told me he had been really thinking and analyising what he had encountered with Katriona. He said he ended up dreaming about her and was really looking forward to treating her as he felt he had more clarity about her now.

He said that he felt that he could sense the flow of the fluid in her brain and it was simply too slow and that is the problem. We chatted about how what he does is outside of what science understands. One day science will catch up and what he feels will be understood.

Katriona's head is really large now. Her forhead is very prominent and her eyes look strange now. I think it is just because of the change in her brow bone, but it might be the actual eyes, it is hard to know. Her head is very large at the back and the back side corner bits (if her head was square) are prominent. She is like a 9kg newborn, there is no head control at all and she is also hardly moving the rest of her body as when she does she loses balance. I am having trouble with her because she is so big and that combined with the lack of head control is making it hard to hold her. I have been using the ergo with the newborn insert and there is still insufficient support for her head. The hugabub is OK, but such a pain to use and too hot for her. She is too big for the twin pram too. If I use the single pram Keira needs to be carried and she is HEAVY. I think I need a double stroller but have not bought one thinking I am being excessive. Then I remember I have a child with special needs (albeit temporary) and should just do it.

Tuesday 25 August 2009

After we saw Dr Ray, I took Katriona to see Hedley who is an osteopath. Hedley had never encountered a case of hydrocephalus before and he was astonished at what he was feeling. He described her head as feeling swampy and sluggish. He said that parts of her brain that should be fluid felt like a rock. Towards the end of the appointment, which Katriona mainly slept through, he said that the areas that previously felt like rock did have some 'give'.

I wish we could have seen him earlier, but he was in Vietnam.

I don't think he can fix Katriona, but I am hoping that he can get her in the best shape possible for the surgery. OK, part of me hopes he can fix her, but I think it is too late even if he could.

Tuesday 25 August 2009

Today we went to see Dr Ray, the neurosurgeon, to get the results of the scan.

On the way in the receptionist, no idea if it was the one who didn't order the MRI for a whole week or not, said "oh that's a familiar name." I knew straight away it was because she had booked Katriona's surgery. And I was correct.

Dr Ray showed us Katriona's scans and they weren't as bad as I recalled. Her brain still has the crinkly bits that it is meant to have which is a good thing. The scan showed no signs of any damage. There is a LOT of fluid though, even the doctor said that. Curiously there is nothing to indicate why Katriona has hydrocephalus; no blockage, no tumour. In the absence of a blockage, there is nothing to 'fix', so the only action that can be taken is to fit a shunt. Dr Ray hastened to say that he didn't like to do shunt surgery unless necessary because it condemns the patient to a life of dependency on the shunt, but there is nothing else that can be done.

Katriona's surgery will be on Monday and he operates in age order so she will be first and he is fitting four shunts that day.

As we left he told us that the previous night he can been called in to the hospital as a baby the same age as Katriona had presented at the ED with obvious hydrocephalus. An MRI was done (the fact that it was done there and then struck me) and it was revealed that this baby had a tumour. Unfortunately it is inoperable and that baby can't be fixed. It reinforced my gratitude that we are in the situation we are in where we can access excellent medical care, that it is free and that our child has had the problem detected early and can be fixed and will live. That other family. How sad they must be.

Friday 21 August 2009

Today went as well as it could have. We arrived at the hospital at 10am. We were admitted; weight (6.7kg), length(68cm), BP, pulse and bracelets fitted. Katriona was was called in at 11.15am. She was getting cranky as she was both tired and hungry so it was a relief to finally know that it was time. The anaesthetist suggested I hold her as she had the gas so I did. At 11.36am she went under giving me this freaked out look as the gas worked on her; poor baby.

The nurse told me that the procedure would take about 30 minutes and to go and get a coffee. I went and got a drink and starting chatting to a lady in the queue, broke down into tears and discovered she wasn't just someone's nana, she was a hospital volunteer and she gave me a teddy for Katriona and gave me a hug.

I went back and waited and waited and waited. After 90 minutes I was freaking out that something horrid had happened and went looking for someone to get an update. I passed the MRI review room and had a look as I passed by and immediately knew I was looking at Katriona's scans; huge and I mean HUGE black spaces which were the fluid and the brain all squashed up at the edges. It so didn't look good. It also was not good when I saw her neurosurgeon come to see the scans and the doctor say to him "there is something not right here".

Just as the surgeon came to see me to tell me about the scans the recovery nurses called me to come and get Katriona who was awake and crying.

We will see the surgeon on Tuesday for a proper appointment, but he assured me that there are no tumours, but it seems that there is also no blockage. He thinks that her brain is just not reabsorbing the fluid and therefore it is building up. Therefore he can't fix the problem, the only solution is a shunt. She will most likely have surgery on Monday of the week after next; 31 August.

I am sad for Katriona that she has to have this surgery and that getting shunt is going to mean a lifetime of making sure it is working so she doesn't die. I don't know what impact the shunt will have on things she can and can't do and I worry that her life might be impeded because of it. But on the other hand, how lucky are we to be able fix this. I guess you just have to look for the positives and I think being alive is pretty positive.

Thursday 20 August 2009

Nothing much to report for today.

I called the ward she gets admitted to for the MRI today. I was told to call at 2pm, so at 2.05pm I called. Apparently you have to call at 3pm .....

At 3pm, they called me and we went through the admissions process. She said to me "you know you are on the emergency list? Do you know what that means?" At this point I suspect that no, I don't know what it means, but cautiously reply "she needs an MRI so you have fitted her in as she is an emergency?" NO! Wrong answer! No, being on the emergency list means that if an emergency case comes in from the ED or ICU that Katriona might be bumped and miss out on her MRI. Maybe it is the odd place I am residing in emotionally at the moment, but I couldn't help but comment, "oh you mean like an emergency that is more of an emergency than this emergency?" A self conscious giggle was her only response.