The conclusion!

So it is now two weeks since Katriona had her surgery and all seems to be really good. Katriona’s head looks smaller; although it measures the same and also looks more evenly shaped ie less like an alien. She is doing really well. Her head control is very much improved although she is still a little bit wobbly. She has begun to vocalise; Dadadadadadadadadad “ which is lovely, although less so at 2am and 4am. She is very bright and smiley and loves to engage with anyone and everyone. Her stitches are the dissolving type and are still evident on both her head and tummy, but healing really nicely. We will go for a check up on 6 October but I am confident that we will be given a clear bill of health.

For now we just need to continue to monitor Katriona a bit more closely than we would for a non shunted baby. Any temperature must be investigated immediately, not left to run its course as you would normally. We need to also continue to monitor her fontanelle and once it closes (around about two years of age) we need to monitor her general well being for any sign that the shunt is failing.

We have a contact at the hospital for if we are concerned and are currently in the process of recruiting a new family GP. We have been warned that we need to become the experts in Katriona’s condition and pretty much tell the GP what to do, ie all temperatures must be investigated, all incidences of headaches, fatigue or lethargy need investigation too. As such we will get a new GP as the one we initially saw when I first noticed Katriona’s swollen fontanelle is clearly not up to the job and the GP we were seeing before then wasn’t much good either.

So for now that is it. As in end of blog. There is nothing really to continue to update so I thank you all for your support during this very difficult time. But I also have some very special thank you’s before I go:

• Thank you to my mum for coming over and looking after everyone for the week I was in hospital with Katriona,
• Thank you Julia for the headwear,
• Thank you Michelle for the guardian angel,
• Thank you Peter and Chris for the rattle and bumble bee,
• Thank you to Rob for visiting in hospital with the gorgeous kitty cat and Amba for visiting with lots of yummy food for me,
• But the biggest thanks go to my lovely girlfriends who organised for the house to be cleaned before I got home from hospital, who also organised for me to have a massage after all the stress and worry of the month leading up to the surgery, as well as organised a lovely organic grocery voucher and also sent various other gifts to support us all during all the stress and worry. You guys are wonderful and your support helped us so much.

Friday 4 September 2009

WE ARE HOME!

I can't tell you what a relief it is to be home finally. We left the hospital today at midday. Katriona has slept for two long sleeps already - amazing what the safety and security of your home (and mum and dad's bed) can do for your sleep! She did a huge poo as soon as we got home so she had a nice warm bath and a good scrub of her head which still has a bit of goop in it (we didn't bath her at the hospital).

We arrived home to a wonderfully clean home thanks to some very special, caring and thoughtful friends who had also thought to have flowers, cakes and gifts waiting for us too. All the washing was done and put away thanks to a very hardworking mum - as in my mum. Katriona and I have caught up with cuddles from Keira and will catch up with Kiffin when she can tear herself away from the TV.

Thank you to those who sent cards, gifts, food and who visited us. Your support is what kept us going.

Thursday 3 September 2009

More of the same again today; lots of noise and fun in the room and not much sleep for anyone.

The dressings came off Katriona's tummy today and the incision in her tummy is quite a bit larger than I expected. It is about 5cm long.

Everything is going well and she is more alert today. Her fontanelle is a bit scary it is so large now. It really does look like an enormous crater in her head. In profile she looks like she is missing part of her head now.

Wednesday 2 September 2009

Today Katriona had a CT scan to check that everything was in place correctly. In order to have the CT scan Katriona was given a sedative so she would be asleep and not move her head around during the scan. I have no idea how she managed it, but Katriona slept for only 10 minutes after she was given it. She had another half an hour later on, but pretty much the sedative did nothing to Katriona. And I had been looking forward to her having a big sleep so I could read a book.

Later in the day Katriona was moved from the high dependency ward with all the monitors and alarms to a low dependency room. We were sharing with five other babies/children; Lauren (2) who had been diagnosed with epilepsy, Max (6wks) who had also had a shunt fitted, Ava (19mths) who had a shunt but fitted as an emergency and with complications, Zoe (7mths) who has also had a shunt fitted and Billy (4) who had had a tumour removed from his spine. The atmosphere in this room was almost carnival like which would be brilliant if you are five, but not so great if you are only four months old and want to have a nap. Poor Katriona found it hard to relax and therefore sleep.

The dressings came off Katriona's head today, but not off her tummy. The incision is horse shoe shaped and about 10cm long. You can see the bump where the shunt is and the line leading to her tummy looks just like a vein and is quite discreet, unlike the pictures I found on the net that had me worried she would look disfigured.

We were pretty much left to it in this room. We still were having four hourly observations, but aside from that we were left alone except for wound care three times a day.

Tuesday 1 September 2009

Katriona has continued to do really well today.

I couldn't get her to sleep at all last night and in the end a nurse rocked her for me so I could get some sleep. She has continued her war on sleep today and has had only three half hour sleeps in my arms. She cries when I put her down. I can hardly blame her as last time she was without me she ended up with a hole in her head!

The IV has been removed as the catheter blocked and since she had finished her 24 hours of antibiotics they decided to just remove it rather than replace it. She also had the monitor for pulse/oxygen levels removed too. It is much easier to pick her up without the tangle of lines hanging off her legs.

Observations are down to four hourly now and she is really doing well. Her fontanelle is normal now. The lack of swelling means I can see how big it has grown; it is like a lake now!

Monday 31 August 2009

Todays surgery went extremely well.

We arrived at the hospital at 7.30am, we realised we had no idea where we were going but worked it out in the end.

Handing Katriona over to the anaestheologist was the hardest thing I have ever had to do. Both of us were in tears. We went and had a drink and pretended to read the paper, but really I think we were both just counting down the minutes until we needed to be in the recovery waiting room.

When we did get called into recovery we were surprised to find Katriona just had a small dressing on her head, not an entire headfull of bandages as we were expecting. She has recovered from the surgery really well and her fontanelle is already a lot less swollen than it was.

She is currently on a high dependency ward and started with half hourly observations that were decreased to hourly by the end of the day.

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!