Our Pal - Phoebe M

Story written 2011

We knew at the 24 week scan that Phoebe would be born with Chronic Renal Failure. Phoebe was induced one week early as there was no amniotic fluid and the first few hours were critical. Phoebe had a peritoneal dialysis catheter put in when she was 24 hours old and she has been on dialysis ever since. Phoebe spent nine weeks in the neo-natal unit before coming home.

In September 2008 Phoebe had her gastrostomy button put in so her NG tube could come out. Phoebe is fluid restricted due to no urine output and is fed special feed through her button. She does have some pureed food orally and likes licking and tasting.

In March 2009 Phoebe lost her sight due to pressure on the brain. She had a VP shunt put in due to hydrocephalus and was registered blind. She currently wears glasses to strengthen what sight is left.In April 2009 Phoebe got peritonitis and her peritoneal dialysis catheter had to be removed. She is now on heamo-dialysis and has two tubes in her chest, which run into her heart. Phoebe has dialysis on Mondays, Wednesdays and Fridays for three hours a time.

Phoebe’s Dad, Lee, is a good kidney match for her and we are awaiting results from various tests to see if a kidney transplant can go ahead.

Phoebe has had 28 operations to date and a recent bladder test showed that her bladder is too small so we know more operations are to come. Phoebe has a brilliant character and is always smiling.

Update 20th May 2014

Phoebe is now 2 years post transplant and she is ‘moving on’ from Post Pals. I’d like to say a huge thank you to everyone who has sent Phoebe and Libby (and even us parents) post and parcels. Each and every one has made us smile at how kind and generous people all over the world are. THANK YOU x

Update 17th March 2014

Thank you to everyone who writes to the girls and thanks for their special Valentine cards too.

Update 1st February 2014

Phoebe’s birthday is coming up and she has some cards and parcels that I have put by until the day. Thank you to all who write to Phoebe and send post.

Update 27th September 2013

Phoebe is now 20 months post transplant and from a kidney point of view all is going very well. I cannot believe the 10th January 2014 will be 2 years.

Phoebe was recently admitted due to a tummy bug that caused her tummy to be damaged and needed time to get better, it is improving but it’s just knowing what kind of things to avoid (sweets and cakes are a massive NO at the moment). We are trying hard to get phoebe drinking as she relies a lot on her button (gastro button) but she is not having any of it. She’s very stubborn not to drink.

We often get asked about our pets. We have a dog called Sandy who is very old, a cat called Toby who is 6 years old, a rabbit called Caramel who is 3 years old and we also have 2 fish.

Phoebes next lot of surgery will now be after Christmas as we are going on our summer holiday in October due to cancelling it from August after Phoebe was admitted. We all so need this holiday and are hoping we can get to go.

We would all like to say a massive thank you too all that send us all post and parcels.

Update 28th May 2013

Phoebe and Libby have a beautiful new baby sister, Trinity-Leigh, born on the 5th of May.

Phoebe is waiting for a date to go in for an operation to plumb her kidney to her bladder at last, but there are complications and risks that could jeopardize her transplanted kidney. This is due to happen around July.

Update 20th November 2012

Since Phoebe’s transplant from her dad, she has been doing much better – it has been 10 months now and she is eating properly and has LOTS of energy. We have to maintain her fluid to make sure she gets enough so she still has a gastrostomy button in, to which we are able to give her water boluses. She is trying very hard to drink this herself but it is a lot for her to drink. The hospital do want the button out so our next step is making her drink and also toilet training. We have had a few problems with this as Phoebe has an urostomy, meaning her urine comes out of a little stoma like hole on her skin, and we have recently had help with and started using bags, as she was getting wet and school was unable to control her amount of nappy changes needed. Over night the bags have helped, but it’s hard to keep stuck to her skin, so it’s still trial and error, although it has helped take some pressure off. We are still in conversations with hospital about eventually plumbing her kidney to her bladder.

Phoebe attends hospital every 3 weeks for routine check ups which means she has not missed school. This is good as she loves going and has started learning braille and is actually very clever with it – she has picked it up really easily and is willing to learn – she has become a very bright little lady.

I would like to thank everyone for their smiles in the post, Phoebe and Libby love receiving their letters and gifts.

Update 25th March 2012

Phoebe is doing very well with her new kidney. She is having her haemo dialysis catheter removed on the 2nd April so will spend a night or two in hospital.

Thank you to everyone that has sent us post.

Update 12th February 2012

Phoebe is now 5 weeks post kidney transplant from her dad Lee and they are doing extremely well. Phoebe now has a urostomy which she now urinates from. It is free flow as Phoebe has no bladder function and it comes straight from the kidney, which means later on (approx in 1 year) they will transform it into a mitrofanoff. So we’re now half way there at making Phoebe’s life a lot better.

We attend the hospital 4 mornings a week at the moment so they can do observations and bloods to keep an eye on her levels; as if there were signs of rejection they could do something sooner rather then later. So far so good though, but we have been warned the first year is the hardest. We have had concerns with Phoebe’s breathing at night so have been referred to ENT for adenoids and tonsils to be removed to help her breathing.

We’ve had some wonderful post, especially for her birthday. Thank you everyone! Thank you to the girls at the high school for all their drawings too – a beautiful idea. It’s an amazing feeling when Phoebe opens her post – she loves all the surprises.

Update 9th February 2012

Phoebe’s kidney transplant has been a success and things are going smoothly. Her dad is in more pain whereas phoebe is thriving off the new kidney. She is in hospital daily for blood tests but all is doing very well.

Thank you all for your amazing post! I love how some cards are hand made and Phoebe always feels them or the stickers on them etc. We have had some really beautiful cards!

Update 12th January 2012

Phoebe had transplant on the 10th January! Her dad, Lee, donated his kidney (they say often it takes longer for the person donating to recover than the one receiving) and then it was transplanted into Phoebe. Lee and Phoebe were both back on the ward the same day – they were tired and sore, but Phoebe was WEEING!

Lee is going home today and Phoebe is going for a scan as her urine isn’t flowing well, but it is to be expected due to the swelling.

I’m sure Phoebe would appreciate some cheery post!

Update 9th January 2012

Phoebe is having her transplant this week with a kidney donated by her dad.

Update 5th October 2011

Phoebe has been in hospital with heart problems and was on 48 hours monitoring.

Thank you to a young girl called Lilly who sent Phoebe a beautiful touchy feely card as it was lovely. Phoebe loves receiving her post and it brings smiles while she has her treatment.

Update 29th June 2011

Phoebe has been doing relatively well. We had a blood pressure problem which seems to have resolved itself now. She recently had to have more work up for transplant injections too which she was very brave for.

We are looking forward to our first family holiday at the beginning of August. It’s just a weekend but it will be a first.

Phoebe has been granted a wish to Paultons Park to see Peppa Pig World on the 14th July and both she and Libby are excited about it.

Thank you to everyone who has sent the girls post.

Update 29th April 2011

We had a slight scare with a clot blocking Phoebe’s line on Monday but thankfully it became free.We have had a lovely Easter weekend and Phoebe and Libby have received some beautiful parcels, letters, and drawings. Thank you Viks for the wonderful Easter egg game too as it was great fun.