31 July 2012

Peppa Pig mania

Paige is completely smitten by Peppa Pig she watches it for at least an hour every night, has stuffed toys, pjs, cutlery, puzzles and even an umbrella and raincoat. I am now 'mummy pig' and Russell is 'daddy pig'. My mother is 'granny pig' and my poor nephew is granddad pig :-). Her famous ask, "Mummy one more peppa pig then no more, I promise!"

We took them to Paultons Park last week Thursday and they had a fabulous time. Paige woke up and says "Mummy are we going to Peppa Pig's world today?" she even has a favorite ride the helicopter ride!

She particularly loves having a lolly though! Oh notice the Peppa Pig sandals

She's looking and doing so well now, she's steady at 11.3kgs and her hair is growing like a super strong weed :-) She's fiercely independent and does her own washing......here she is loading the washing machine

Her bloods however are fairly static at 0.6 Neutrophils for the last two weeks. New blood cultures were done yesterday and we continue to monitor her like a hawk after her line has been accessed.

We're busy getting ready for the double special christening that is planned for this Friday for both Sam and Paige. The kids are quite lucky to have their mama and cousin Darien here for the special event. Paige will have both her God Parents present. Richard, my best friend from Trinidad who arrives tomorrow, and the lovely Kathryn (another Trini) so Paige is clearly blessed all around! Unfortunately for Sam his god parents won't be able to make it Joanne (Russell's sister) is 9mths pregnant and actually has a due date of tomorrow and Kevin (my brother) can't be here till Christmas. We'll also be joined by a select few close friends. We're all quite looking forward to it!

From now on I'll try to update the blog at least weekly after her bloods are done.

Good night to all.

24 July 2012

three weeks

So much has happened since our last update....and my entry of July 9th that got accidentally deleted

Paige grew a literal zoo in her line, so much so that I can neither pronounce nor spell the bacteria that grew in her line, it starts with S and sounds like a dinosaur :-) The particular bug that her line has attracted is apparently quite difficult to get rid of so she spent a total of 10 days at the hospital and was only discharged on July 12th. This amazing little girl is so flexible and can accommodate anything. Due to the infection she had to have a cannula put it and that didn't stop her at all she just carried on and adapted to having the use of just one hand at a time. In fact one day when the nurse came to administer her anti-biotics, Paige said to her "be careful, it's very delicate....". As u can see from the pic, it's got quite a large support plinth.

Paige had experienced septic shock on the Monday July 2nd when she became ill, it has always been one of my greatest fears. Luckily I knew something wasn't quite right and we took her straight down despite the advice that I received to wait with her at home. Luckily she was treated quite promptly and efficiently and she recovered quickly. So the combination of the nasty infection and the fact that she was so ill upon admission meant that Dr Morgan gave strict instructions that she should remain in hospital for at least 10 days and only be discharged if she had negative blood cultures. Dr Morgan always tells us that she keeps a close eye on Paige, and now we know for sure since Paige was at QA and she was still calling the shots!

When Paige came home she was finally able to enjoy spending time with her grandmother and cousin Darien. We celebrated with a weekend at Hannah's Holiday home, on Hayling Island which was kindly donated to us for the weekend July 13-16th. It was great for us to all spend some time together at last. The kids had a fabulous time! Of course it rained all weekend so we spent a fair amount of time indoors!

Paige had her 4 weekly dose of Vincristine on Monday July 16th, followed by her delayed lumbar puncture on the following Tuesday at Piam Brown. Everyone at PB was so pleased at how well Paige looked :-) Paige tolerated waiting her turn like a big girl and after the LP she actually slept for a full hour! Dr Morgan has advised that we keep a close watch on her after her every time her central line has been accessed because of her recent infection. Her neutrophils are at 0.7 and if her general blood results do not recover as well as Dr Morgan expects, it may mean that her line will be removed....so we will watch and monitor! In fact after her chemo on Monday we had to stay at the hospital for an hour afterwards, upon leaving I asked for her temp to be taken and it was fine. Then we got some much needed KFC and I though she felt warm so I pulled into a car park and checked again, she was still fine. When I relayed the story to Wilf our specialist oncology nurse, telling him that I felt like a neurotic mother he simply said "Lisa you are doing all the right things, she is your child and you don't want any harm to come to her. Keep on doing all that you are doing." I felt much better after that :-)

Paige continues to astound us with her extensive vocabulary and numeric skills, the lovely Miss Paige can now count to 13 and at least 3 in French. This is of course was a feat accomplished by her big brother who has taught her to count. Samuel can now count to 20 and at least 10 in French!

On Sunday we went on a Teddy Bear hunt, which the kids thoroughly enjoyed at the 100acre woods. Below is Paige with her prize after finding all the bears, her bally ball as she calls it. In her lovely dress, gift from Uncle Kevin after his trip to St Maarten......

After the hunt she reallly enjoyed being on the swings, another first for her Samuel said "mummy Paige and I are like batteries in here!"

Words cannot describe how it felt, it was sooooo good to be out and about and to be able to do 'normal' things just like a regular family....and thanks to our avid photographer Darien we even have a family photo :-)

And finally we aim to enjoy the Sun as much as we can this upcoming week. Paige's blood results are static but we were told to expect that. She continues to have her nightly feed and is actually up to 11.3kgs this morning yeah! She also now has a beautiful mane that can be shampooed :-) I nearly cried when I shampooed her hair for the first since she's been diagnosed time last week.

We kicked off this week by finally moving the garden toys into the garden and the kids are having a great time, especially since grandma (or mama as mummy likes to be called) and Darien are here.

Looking forward to the warm weather this week and all the barbques that I am sure that Russell will be preparing :-)

Good night to all

3 July 2012

Back in hospital

On Monday morning Paige had her routine weekly bung change and blood test, but soon after her temperature spiked. We called the hospital but did not wait for the test results to come back - Paige looked unwell and the most likely cause was a line infection. In such cases, getting to the hospital ASAP is the best call. Sure enough, her temperature went as high as 39C and her skin was pale and blotchy. The doctor was worried enough to classify her as "high dependency". They started her on Meropenem and Teicoplanin and took some more blood for cultures. She was also given emergency fluids.

It took less that 24 hours to confirm that there was an infection in her line. This is common when a foreign object remains inside the body, but thankfully we had so far escaped this fate. The bugs live in the line and, whenever it is accessed, they are flushed into her blood and thus around the body. The initial catalyst was the blood test on Monday, and Paige's temperature also spiked every time the antibiotics were administered.

The solution is to stop using the line, while "locking" a dose of Gentamicin in it. This was done today. The Gent has to be replaced every day for the next ten days. Hopefully the first dose will kill most of the bugs, as we need to flush her line before the Gent is inserted. 

In the meantime, we still need to administer the antibiotics, and so Paige has been fitted with a cannula. This is the third time in her life that poor Paigey-Lou has had one of these. The first time was just after birth, when she was at risk of a staff infection. The second time was, of course, just over a year ago when she was diagnosed, before the line was put in. Needless to say, it is not a nice experience. The fitting itself was painful, but every time the drugs are administered, it causes an unpleasant sensation in her arm, one I have recently experienced during a CT scan. 

Nevertheless, Paige is a trooper. I spent the last 24 hours with her while Lisa took care of Sam. Her skin very quickly returned to its natural lovely shiny brown! In between the temperature spikes, she is happy and active. We hope to be home by Thursday.

Making pizza