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.

Wednesday 19 August 2009

Today I took Katriona into the emergency department because I needed to either gain reassurance or get the MRI done. When I got to the ED there was only one person ahead of me in the line, 15 minutes tops we were seen by the triage nurse and taken straight into the 'serious' part of the ED. We were admitted, I was advised to not feed her (ie start fasting) and she was seen by the doctor.

We chatted to two med students but Katriona was really tired and really upset after they all got a poke at her so I got rid of them and she had a sleep.

The Dr tried to get hold of the elusive "Cindy" from MRI appointments but couldn't; no surprise there. They finally they got hold of her to book her in for an MRI today and she had booked us in for Friday. So they called the neurosurgeon to come and look at her. He said she looked OK and to do the MRI on Friday as booked.

At this point I got stroppy and said things to the effect of "I'm here now, let's just do it", "she's waited long enough, let's do it", "if it is done on Friday and it is urgent there is a weekend to deal with, let's just do it". etc etc etc But the neurosurgeon said that the earliest he would operate is Monday of not next week but the week after. So therefore MRI is OK for Friday.

So Friday it is.

Thankfully everyone who saw her agreed she was not really in a good way. But as she isn't 'critical' therefore she can wait.

I decided to go and find the MRI department so I would know where I was going for the MRI and thought there would be no harm in trying to bluff my way into a Thursday appointment. Whilst I was waiting for 'Cindy' (who of course was no where to be seen) I was standing in the hallway eavesdropping on the Dr's discussing scans etc and they were looking at someone's scans who had come in last night, had an ultrasound and then got an MRI this morning. They had already discharged said patient so can't have been anything really bad or they would have still been there. So I guess their emergency was more important than ours, even though you would think with them being discharged already that it couldn't possibly be.

'scuse me for being cynical.

Tuesday 18 August 2009

I feel like I am part of one of those tragic movies where you can see from the beginning that the plot is that something goes wrong. But it isn't a movie ...

Despite yesterday discovering that our "urgent" MRI referral had not been sent to the MRI department but being told it would be sent there that day, it wasn't. MRI only got the request today. But even though they got the urgent request, apparently the doctor is very busy and hasn't got time to look at it.

I had emailed the surgeon last night so he would get it this morning and he advised via return email that he had upgraded Katriona to an "emergency" case, but still no call from MRI. I had even spoken to the MRI department, after I spoke to the resident earlier to day and after the upgrade was sent to MRI and they STILL haven't called.

So can someone tell me that if 'urgent' still elicits no response from the MRI department and seemingly neither does an upgrade to being an 'emergency', then do you have to actually be dead to get medical attention?

This is just completely wrong.

Monday 17 August 2009

I finally got hold of the neurosurgeons rooms - it only took six phone calls. I was advised that I shouldn't worry as I will be contacted, but that an MRI appointment will take a couple of months to schedule. I felt like I had been punched in the stomach. I couldn't help it, I blurted out "but she's got hydrocephalus, a couple of months is too long". I was put on hold. I almost hung up I was feeling so emotional.

"Oh, her file is marked as urgent and I have just received it to book the appointment for you today." I still don't feel particularly reassured. We had our appointment a week ago and if it was urgent I would have thought that the file would have at least made it to the secretaries desk within the week we had our appointment.

Katriona has lost what little head control she had. I think her head feels heavy and is always hot too. We have to support her head like a newborn when we hold her as it falls back and she can't get it back up without assistance. I could be imagining all of this of course, but I am sure she is getting worse.

Monday 17 August 2009

Well now Katriona has a cold just to make things all the better for the poor mite. She can't breath and was awake a lot of the night.

I have been googling. I shouldn't.

I have to call the neurosurgeons rooms and get a time for this MRI. My googling has revealed that if the pressure in her brain gets too high she'll end up retarded. That is the goggling that I shoudl not have done.

Saturday 15 August 2009

I have realised that Katriona's fontanelle is not really that much less swollen than it was. It isn't necessarily bigger, but also not smaller. However, her head circumference is 1cm bigger than last week. And yes, I did measure more than once.

We have contacted the neurosurgeons rooms to find out when she can be booked in for the MRI. For all that I was hopeful that we could somehow get a miraculous cure, it seems that it isn't happening and it is time now to find out what is causing the build up of fluid and look to intervene.

Poor baby.

Friday 14 August 2009

Today I am wondering if the swelling of Katriona's fontanelle is less. Hmmmm, wishful thinking or is it really improving? Has the craniosacral therapy helped with the drainage? Has the chiropractic adjustments sorted out the constriction and that is why the drainage is improved? As I completely imagining it and really her head is the same size and I am fantasising that everything is improving?

This morning she had a big cry and it was really angry in tone. I did my best to support her through it and encouraged her to let it all out - Terry suggested this - and it did seem to work. She cried lustily and then just stopped and looked at me and then started looking around for some milk. She had a feed and is now asleep!

If I get up up after her nap and the fontanelle is normal I think I will faint with relief. But I won't get ahead of myself, just a bit smaller would be wonderful and the start of her healing this problem for herself.

Thursday 13 August 2009

Today I took Katriona to two appointments for the double 'kapow' action on the fluid of her brain. The first appointment was Terry, a cranio sacral therapist. She was tops. I cannot rate her highly enough. She was kind, she was respectful, she was gentle and she - by just using her fingertips - confirmed everything that the neurosurgeon had suggested. How freaky! She suggested that Katriona's speedy arrival may have really stressed her and left her on an andrenaline high. She felt that the drainage tubes - she did give them a name - were compressed and therefore not able to drain the cerebral fluid very well. She also noted her sinus' were conjested and just this morning she started being a bit snuffly. What Terry said about the compressed drainage tubes ties in with the chiro/osteo, Lesley, who had noticed Katriona had some stiffness in her cervical spine.

So anyway, right in front of me, as Terry was working on her, Katriona began to cry like she had when she was born and then began to replay the movements that a baby needs to make in order to be born; head extended, turn to the side etc ... Terry also noticed it and agreed with me that it did indeed look like a rebirth of sorts!

Later in the afternoon we saw Lesley, our third appointment since realising Katriona had the hydrocephalus, and she did some further adjustments to Katriona's neck.

We still have not heard back from the neurosurgeons office with a date for the MRI. Part of me wants it done ASAP because what if she does need surgery, the other part of me thinks to hold off and give natural therapies a chance to work first.

It's hard work being a parent sometimes!

Wednesday 12 August 2009

OK, so we have had something of a reprieve. We saw the neurosurgeon yesterday and after checking her scans, measuring her head and comparing that to the 'head graph' and questioning us about her general health, he declared that he thought that Katriona's hydocephalus 'may' be viral in nature and therefore 'could' resolve itself!

In order to get to the bottom of the cause of the hydrocephalus Katriona has to have an MRI done, probably under general anaesthetic. For an MRI you have to keep really still and this is not possible for babies, so a general anaesthetic is the only way to achieve this.

After reviewing the MRI Professor Ray will make a decision as to what tactic he will take. If surgery is necessary he basically said that he would prefer to attempt to clear the blockage in the first instance and insert a shunt only if absolutely necessary. If he does have to operate it is unlikely to happen for at least two weeks unless there is a sudden and dramatic deterioration in her condition - ie an emergency.

So we are cautiously optimistic that things will just go away. In the interim we are contining with the osteopath and chiropractor. I have upped my vitamins hoping that this will transfer through my milk to Katriona and boost her system so she can fight the virus off if that is the problem.

Katriona continues to smile, laugh, gurgle and show no signs - barr her swollen noggin - that anything is wrong at all. That's babies for you; they bounce!

Sunday 9 August 2009

So we ended up going into the children's hospital today as we noticed that Katriona's eyes were 'sunsetting'. I called the Health Direct people again and they advised heading straight in and making sure all was OK.

After waiting for what seemed to be an eternity - even after jumping the entire triage queue - we were seen by Dr Jo. As it turns out, because the sunsetting eyes was not accompanied by any other symptoms, such as uneven bilateral responses or lethargy, that it was not 'that' concerning after all. They did want us to stay for a few hours to do neurological observations, but Kiffin and Keira were really losing the plot because they were tired and I am informed enough to do the obs myself at home so we convinced them that we should go home.

So we got home at 4.30pm where I promptly did as much cooking as I could. We are now the proud owners of Capsicum soup, meatballs, Salmon and Spinach Quiche and Roast Pumpkin, Fetta and Caramelised Onion Quiche - YUM! We have so many meatballs that I don't think I really need to cook the lasagne and chicken tomorrow - but I've defrosted it now so I have to!

I have told Katriona that it is OK for her to fix her head herself to save herself the trouble of having surgery. I am not sure she knows how though.

Saturday 8 August 2009

We measured Katriona's head circumference and plotted it on the chart in her baby book. It is currently 44.5cm. For her age that is off the chart whereas her head circumference has previously been consistently on the 97th percentile along with her height and weight. For her head circumference to be at the 97th percentile it would need to measure 43cm. So Katriona's head circumference is now out of proportion with the rest of her body and also showing a marked increase in growth - all consistent with the hydrocephalus. In this picture you can see how her head is beginning to bulge out a bit around the top side bits. But she is still gorgeous!

I have done a bit more research and now know that the surgery will take approximately 90 minutes and that a 4-5 day stay in hospital is likely. I am still not sure if I will be able to feed her in the first 24hours so will express milk for her. I have read that they may insert an IV for fluids, but I am not sure what the go is for feeding her and I'd rather have a supply ready for her than be caught short. It won't go to waste and it doesn't matter even if it did.

Phase one in cooking in anticipation of not being home has commenced with a large batch of pumpkin soup, a mum and dad sized meal of Osso Bucco and the purchase of ingredients for tomorrows marathon in the kitchen; lasagne, Swedish meat balls, chicken cassorole, tuna mornay, chocolate brownies, banana muffins and anzac biscuits. If I actually achieve all of that I think I deserve a medal. Or a holiday. Or my child to miraculously heal ...

Friday 7 August 2009

We had our appointment with the paediatrician, Dr Des, at 3.30pm. He was great. As we were sitting in the waiting room to see him I overheard his receptionist talking on the phone and was saying he was going away on holiday overseas for a month. I was groaning inwards because I was concerned that any review of Katriona was going to be long and drawn out if that was the case. As it turns out, Dr Des had taken Katriona on because he was worried that if he didn't that no one else may be able to see her and she wouldn't get treatment in an appropriate time frame. He had already read the report from the ultrasound and as he put it "had taken the liberty of organising an appointment with a paediatric neurosurgeon for Tuesday next week." His efficiency was both reassuring and alarming; reassuring that she was getting treated but alarming that it was now apparent that this really WAS serious.

Dr Des thoroughly examined Katriona and pronounced her to be in great health - except for the hydrocephalus.

He explained that Katriona had increased fluid in the first and second ventricles and normal fluid amounts in the third and fourth ventricles indicating that the problem lay between the second and third ventricles; the Cerebral Aquaduct. He told us that to fix Katriona it basically was a choice of surgery or ... erm, death! A no brainer really.

I had done some net surfing on Katriona's condition and had thought that everything I read was 'worst case'. I had assumed that the doctors would prescribe some sort of magic dilating drug that would dilate the narrowed tubes of her brain. I also thought that maybe they put those mechanical dilators in that you see for blocked arteries. But no, it seems that a Ventriculoperitoneal Shunt is pretty much what they do. And much to my horror I realised it was a lifetime solution. It isn't something they put in and take out in a week. It stays there. Forever. It needs to be replaced several times in her lifetime. I honestly didn't know how to react. Was this good news? Was this bad news? All I could think was that at least this is a routine surgery. Cancer, which could have been the cause of the hydrocephalus, would have been an unknown; what sort of tumour, where is it, is it malignant, is it's removal going to harm her etc etc Compared to a tumour, a narrowing of the Cerebral Aquaduct seemed not so bad. In the scheme of things. If you know what I mean.

Hydrocephalus

Ventriculoperitoneal Shunt

Thursday 6 August

Katriona was very clingy all day and wasn't sleeping well. I had no idea if she was just being a baby or whether her unusual behaviour was due to her head.

I took her to a chiro/osteo for an adjustment. I was hoping that somehow this would miraculously cure her head, but I knew it was unlikely. As it was her neck was a bit out of whack but that had nothing to do with her head.

Wednesday 5 August 2009

As Katriona has never been to a GP before, I figured it might be a good time to find a paediatric GP so looked one up in the yellow pages. There was one around the corner, so at 9.05am I called. I explained the situation; I made sure that I let them know that it was pretty urgent and that I had been advised to go to a GP. But the person on the phone said they were booked out and couldn't see us. I asked if they had a free emergency appointment (all doctors have these apparently) but she said they didn't. She didn't offer any more help. I hung up and cried. It was at that point I realised I was REALLY worried about her. I called the GP that is at our local shops (who I haven't been to since they were rude to me the time I slashed my finger open and they wouldn't see me) and they had a 9.30am appointment that day so I took it. I took a picture of Katriona's fontanelle as I was leaving, can you see the bulge on the top? That is what I was worried about.

When I explained to the doctor what my concerns were she dismissed them and told me that as she was otherwise healthy and symptom free that there couldn't be anything wrong with Katriona. I reiterated that her fontanelle wasn't normal and that I would like a further investigation to put my mind at rest.

The doctor begrudgingly phoned to see if the medical imaging centre at the local hospital would do an ultrasound. They said they would. I was offered an appointment for Friday. I asked for something sooner. How about 11am? Sure. The doctor was worried I couldn't get there on time - it was only 9.40am and the hospital is 2 minutes away. Idiot.

We went for the ultrasound and even I could tell - untrained - that there was too much fluid in her head when I looked at the screen. Sure enough, the operator explained that the ventricles of the brain were larger than they should be; a condition called Hydrocephalus.

At 2pm, the doctor called telling me that they had made an appointment for Katriona at a paediatrician for an urgent assessment based on the report from her ultrasound. The appointment was for Friday 7 August. It felt a long way away time wise for urgent, but at the same time the fact that I wasn't being told to get straight into the ED at the children's hospital was a good thing.

Tuesday 4 August 2009

On Tuesday 4 August at 6pm, I realised that Katriona's head - specifically her anterior fontanelle - was swollen and bulging. I knew that this was not normal, but just to be sure I googled and discovered I was infact quite correct. As it was already 6pm and therefore past closing time for most doctors surgeries I asked my online buddies whether I should freak out and go to the ED at the children's hospital or just see the doctor in the morning. One of them sagely suggested called the Health Direct line and asking them what I should do. So I did and they said not to freak out but to definitely have her assessed by a doctor in the next 24 hours.

The journey begins

This blog is for Katriona and her family and friends. We have decided to create it so that people close to Katriona can find out about her and her poor little noggin.

We think, given the sheer number of family that want immediate updates and friends that are concerned and want to know more but don't want to intrude, that a blog is a good way to keep everyone informed but not have to repeat ourselves several times every evening on the phone.

This is a pretty difficult and emotional time for us. We are anxious and concerned about the health of our little girl. We don't think that retelling what is going on numerous times a day for everyone is very healthy for us, but in addition to this we will be short on time for a while as we try to manage the needs of Katriona in hospital and Kiffin and Keira at home, so not spending hours on the phone is critical.

We know that you will all understand and not keep pushing that you be 'the one' who can still expect phone calls updating you on what is going on day by day. We appreciate your interest, but we really do need to focus on our children at this time and try and keep things as normal as we can and make sure that all three of them have their physical and emotional needs met, not spend all day on the phone providing updates that could be obtained from one central source; ie this blog. We will make it a priority, after looking after the girls needs, to update this blog with any new information. We may not have the time to call, so if you want an update, please look here first.

So this blog is for all of you to know what is going on so that when we do talk on the phone we can keep things positive and supportive, not rehashing what is going on.