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.