Archive for December, 2008

Coughs and sneezes spread diseases

Monday, December 22nd, 2008

Jasmine with all of her pressies

I have been feeling so ill. I didn’t realise how ill I felt until today when I woke up and felt a bit better. That didn’t last long as I had to go to the hospital to get some bloods done, but it was great as there wasn’t much of a queue so I was soon home and back on the settee.

Neil has been a total star (as always) and took over dialysis duties when I couldn’t even stay awake and had to go to bed. And I had to miss out on meeting Barbara and Andy for pre-Christmas drinks which was sad. Being pregnant, there wasn’t much I could take to help myself get better so I have been drinking hot lemonade which I just thought was a nice drink my mum gave us when we were little and ill but it really works. I have also being doing lots of neti which makes a big difference, even if it isn’t very attractive (here is that neti video demo again because it makes me laugh).

Jasmine has had a cough too, following the bug she had last week, but she has kept on drinking her milk and chewing on things and just coughed now and again. She hasn’t complained about it so I am hoping it hasn’t felt too bad for her. She has been sleeping a bit more than usual and hasn’t been eating many solids. But she has been her usual smiley, singing self, which is just lovely. Apparently, it is ‘normal’ that her appetite comes and goes in the same way that her desire to drink her milk does.

So, we are just about ready for Christmas. Tomorrow we have to go and buy Neil some turkey – my quorn roast is in the freezer – and more parsnips since we ate all the other ones. And then we will ice the Christmas Cake.

I thought about putting up a festive picture of my red nose – but I didn’t really look like Rudolph so I decided on the extra cute photo of Jasmine and all her presents.

Jasmine and I (well mainly Jasmine) have invented a new game together. When I sing, ‘If you are happy and you know it clap your hands’, Jasmine squeals and holds my hands and then she leans forward and puts her face in my hands, and then I shout, ‘Bus driver’ (as in ‘Bus driver, open the doors’) and she laughs and then we do that over and over and over until Neil wants a go.


Wednesday, December 17th, 2008

Jasmine eating a marmite breadstick

Today we went as a family to have some counselling down at GOSH. It was very good and we came away feeling much better. Most of the time, things feel manageable. However, some days we get a bit down with everything we have to do and the fact that we are here, the two of us, doing it alone.

It was lovely to talk to someone about all the stresses of having a chronically ill baby and how we are learning to cope with all the various things it entails. And it was great that there is someone paid to listen to us so that we don’t have to feel guilty about permanently bending my Dad’s ear or using up the precious time of the lovely GOSH nurses.

So! Counselling was good. We will be going back again and I would recommend it to anyone who feels like they are having a bit of a tough time.

Jasmine has been having a couple of rough days. She had a temperature of 38.6c the other night, but it came down after an hour. It wasn’t like the time recently when she had the scary rash and breathing difficulties, so we were quite relieved we didn’t have to rush down to the hospital, but we did have an hour of so of trying not to worry even though her fluid was clear and she wasn’t in pain (signs of peritonitis – the thing we check for morning and night).

But, even though the temperature came down, she did go on to spend two days vomiting really badly and having terribly smelly nappies. We think the worst of whatever bug she had is over as she is back to her smiley self and was jumping up and down with excitement this morning, as normal. Her two front teeth are nearly through now, and I still get a surprise each time she smiles at me with these big gnashers. They look great. She looks great. Neil is great too (in case he feels left out).

marmite breadsticks

Jasmine is really into marmite breadsticks as they are good for chewing and ideal for her little fingers to hold onto and they are really tasty!

A mini-Christmas

Sunday, December 14th, 2008

Mini Christmas

Today, we had a mini-Christmas day with Grandma Stalker. We had turkey (mine was quorn turkey) with all the trimmings followed by Christmas pudding.

Jasmine seemed bemused by the whole event. She didn’t mind the crackers and enjoyed the snapping-crack noise. Surprisingly enough though, she hated the party hats and cried when we put them on, apart Grandma Stalker’s hat which no one could see because of her hair (and she has just told me that I am very cheeky for typing that). Jasmine never cries at anything ever so it was really strange to see cry over a party hat.

Jasmine has been receiving lots of presents and cards through the post – she has more than us. We have put them all under the tree and are getting very excited about Christmas Day. She also got a pre-Christmas lovely new outfit from Sally and John (thank you very much) and one from her Grandma.

Jasmine has not taken eyes off her Grandma since she arrived. She is amazed by her and likes to sit near her so she can stare at her without any obstructions. We have had a lovely relaxing weekend with Grandma and will be sad to put her on the train tomorrow.

Christmas is coming

Thursday, December 11th, 2008

Jasmine's new catheter

Yesterday morning, we got up bright and breezy and went down to GOSH to get a line change on Jasmine’s tenckhoff catheter. Her new one is in the picture above. The part which is surgically inserted inside her peritoneum is nice and soft and helps keep her exit site (the bit which sticks out of her tummy) clean, as harder tubes can cause the skin around it to fray and become sore. However, the other end where the tube sits on the connector (white tube and blue and white cartridge in picture) which we plug into the dialysis machine has now worn away three times, so yesterday our nurse clinician said that she would try a titanium connector (silver bit at top of picture). Each time the line needs changing they have to snip a good inch off the tube which you really notice when you come to plug Jasmine in on a night.

I like the new look, the only downside is that I can’t constantly check for frays as the actual connection is shielded. However, our nurse clinician and I think that could be a good thing as I was getting a bit obsessive. So, we will see how we get on as it was a bit of squeeze getting the line onto the new connector (there are so few makers of baby-specific PD catheters that getting everything to fit together and without any glitches is something everyone is still figuring out) and just to be absolutely certain because our nurse clinician is fantastic and thinks of, and anticipates, everything, Jasmine’s bags had antibiotics in them last night. It does feel psychologically a bit more robust, and apparently it is good for when children are a bit older and love to tug on the catheter. Jasmine has started doing this already and sometimes will put her hands down her babygro or trousers and fish the catheter out so that she can chew on it.

This animation about how peritoneal dialysis works is the best thing I have ever see on the internet about PD so I putting the link in again here:

Last night we put our Christmas tree and decorations up as Grandma Stalker is coming today for the weekend, so we thought we would start early. We are very excited! Jasmine is only remotely interested in the tree and that is only when you point it out to her.

Her NG is out again for the moment as she kept pulling it out and she is drinking fine from her cup, but the moment she flags again she will get the tube back down. I have stopped fretting about whether the NG should be in or out as her weight gain is slow either way, which is ‘normal’.

Jasmine is a delightful little person and I am thrilled to spend everyday with her. She has her two top teeth coming through together and she has put on a bit of weight – 6.3kgs/13.9lbs is probably her dry weight (that is her weight without the fluid that she has in her peritoneum to dialyse her during the day). So, her teeth total is now four! What a big girl. The other day when we were playing clap-handies, she got hold of my hands and put them together and shouted, “Ap.” I was besides myself with excitment.

Jasmine and the Christmas tree

Jasmine posts a letter

Saturday, December 6th, 2008

Jasmine posts a letter

Jasmine’s cousin, Hannah, will be three years old tomorrow, so the other day Neil and Jasmine went to post her card and present. Jasmine realised the importance of this task and held onto the card all the way to the postbox. She is so clever.

Yesterday, was delivery day. Baxter (dialysis people), as usual, were really good, except the man’s trolley broke so he was a bit sweaty by the time he had delivered all the boxes of fluid and the rest of it. Fresenius (food pump people) were, as usual, totally rubbish and amaze me with their total inability to do something as simple as delivering one box of giving sets. I rang them up to give them a piece of my mind but Neil wrestled the phone out of my hand. Finally, the delivery turned up at 4pm in the afternoon whilst we were out. Neil took us all for a walk to the doctors and the chemist so that I wouldn’t strangle the delivery person.

When we got back, I reviewed the Fresenius food pump and even suggested improvements at no charge. It normally costs companies a lot of money for my professional services, but this food pump is so bad, it needs all the help it can get.

Things have been plodding on as usual – which is nice as that means we are not at the hospital. Jasmine has been vomiting loads, and either pulling out her NG or sicking it up. She only wimpers now when we stick it back down her nose. But she is so quick at pulling it out, I am always torn between being impressed and annoyed. We have been doing the machine and the dressing and injecting her and going to the chemist for all the medicines she needs as usual.

It was quite funny, as I was telling everyone down the hospital that it only takes me 12 minutes to do the machine. But pride comes before a fall. When I got home that day I was so tired I kept touching the walls and doing things in the wrong order, so it took me at least 50 minutes to set up the machine and my dressing change wasn’t half as neat as normal. We didn’t sit down to dinner until 8.30pm (dialysis duties always kick off at 6pm). Even getting Jasmine on her machine took me longer than usual. Neil said that it served me right for showing off. Too true!

When we went to GOSH the other day there were loads of press outside following the progress of the conjoined twins. My heart aches for their parents and I am so very sorry for their loss. We know exactly how it feels to sit in NICU and be told that your child might not live. We are holding them in our thoughts and praying for good news.

Neil: Hospitals, hospitals, hospitals

Thursday, December 4th, 2008

Jasmine on the new daybed

We have been to the hospital for three days in a row, so we are having an easy day today and collecting our thoughts.

On Monday we went to clinics and Jasmine got measured and weighed, and had her bloods done. Jasmine is looking good, but struggling to get enough calories and nutrients to grow well. Her length is good (65.4cms) but her head circumferance and weight (6.1kgs) are a bit of a worry. She is really good at sitting up and looking about. We are increasing her feeds again and going back on Domperidone, which is supposed to push her food through her digestion a bit quicker and prevent vomiting, for the week. There isn’t much evidence that it works, but we are going to try it out as she has been vomiting a lot lately. Last time when she was on it, she kept sticking her tongue out and her eyelids were drooping and eventually, she had to go for a brain scan to check that it wasn’t anything sinister. This time we will see whether she ends up sticking her tongue out all the time, and if the Domperidone actually helps.

We discussed transplants and are starting to get into the details of tissue typing. Ruth got a bit weepy and everyone was really nice and talked to us for a good while.

When Jasmine gets a transplant, if all goes well, she will probably be in hospital for two weeks. Then we will have to take her for blood tests every day for a further month. Of course the fact that she is very small and sensitive means that things change and she could be in and out of hospital a lot. She will still need to take a number of medications. We now have plenty of leaflets which is good as it gets us used to the idea. Previously we were having trouble getting past the statistic that on average you are 4000 times more likely to die on the table than win the lottery. However, there are lots of safety tests and so far a live kidney donor has not been lost in the UK. 5% of transplants fail in the first year, but then the failure rate tails off. A cadaver kidney may last 10 years on average, while a live donor kidney may last 20 years with present technology.

Currently, I am the correct blood group and we are waiting on tissue type testing results. If I can donate a kidney then I would be in a different hospital (the other end of town to Jasmine) for about five days, then need about six weeks to recover. As we are going to have a new baby as well, we could be rather busy, and more than a little stressed!

On Tuesday, Ruth and Jasmine went to UCH so that Ruth could speak to a consultant about her pregnancy. Everything seems to be in order and the consultant was positive about the chances that we will have a trouble free pregnancy and hopefully a natural delivery, if this new baby’s kidneys develop ok.

On Wednesday, Jasmine was assessed by urodynamics to start thinking about what operations to do post-transplant to sort out Jasmine’s plumbing. We met a lovely nurse there who talked through all the possibilities and really cheered us up. After that we wandered around the wards catching up with people in the different units we are involved with. It was lovely to see everyone and not be there for treatment.

Jasmine’s new titanium catheter hasn’t arrived yet, so we will make another trip back to GOSH to change that when it does. The soft line and double cuff for the tenckhoff catheter have helped keep the exit site clean, but the wearing at the other end is a bit of a worry.

We have got a lovely new daybed, which is very comfy. Now whoever is not on dialysis duty can get a good night’s sleep, and Ruth won’t have to lie on the very uncomfortable camp bed when nine months pregnant. Whenever we have a minute we can now go for a lie down.