Archive for September, 2008

Great Ormond St Fire

Tuesday, September 30th, 2008

Jasmine looking fed up

We got up on Monday morning to go down to GOSH for our outpatient appointment and when we got there the street was cordoned off, with hundreds of people (mainly journalists and cameramen) standing about. We stood about too, as when something out of the ordinary happens, it takes a while to figure out what to do next.

Eventually, a journalist looked at Jasmine, who was looking really cute, and then at us and began to approach us (obviously thinking we would make a good human interest story) so we took to our heels and ran away. We went for a coffee and then after a while of sitting there decided it would be good to ring the hospital.

They had been trying to ring us (but in the excitment we hadn’t switched our phones on) to tell us to go home and come back next week as they had been warned that the street could be cordoned off for the whole day.

The coffee shop had lots of people coming and going, and ringing back and forth to get updates. Jasmine, as per usual, wondered what all the fuss was about. Eventually, news filtered through that there had been a fire in the cardiac wing. Four firefighters were injured fighting the blaze but no patients or staff were.

A brilliant feeding day

Tuesday, September 23rd, 2008

Jasmine musing on who should win the Sterling Prize

Jasmine has had a brilliant feeding day today. She only vomited 4% of her total feed. I am thrilled and am writing it here so that on those days when I feel like she never stops puking and we all smell of sick, I will be able to look back and say, “Ah that was a good day.”

And it was. Jasmine is still recovering from her cold and Neil and I are trying to not succumb to one. Jasmine and I lay on the bed and listened to Radio 4 and had lots of snoozes and we only got up to get more tea, milk, and various snacks. By mid-afternoon we had run out of teabags and milk (not Jasmine’s – but it tastes a bit funky in tea) and the rain had stopped, so we went for a stroll to stock up.

When we came back we lay about some more. This time in front of Fantastic Voyage – one of my all time favourite sci-fi movies, which was serendipitiously on Channel 4. Then Neil came home and said, “What is this rubbish you are watching? Why is he getting eaten by a marshmallow?”

Yesterday, we went to RIBA for breakfast and a look round the Sterling Prize Exhibition. I think the Dutch train station should win. Neil thinks the Cambridge flats should. Jasmine, as you can see from the photo, is still thinking about it.

Knowing Jasmine

Saturday, September 20th, 2008

Jasmine lying on her front

This morning, after Neil had fed Jasmine via her NG and the food pump, he had her lying on her front on his lap while he played Grand Theft Auto. She was wailing away so he said to her, “I’ll pick you up but don’t blame me when you puke.” He put her vertical and hadn’t even managed to turn her to put her on his shoulder when she vomited. We are getting to know her ways quite well.

Neil got us a PlayStation and we have been playing Grand Theft Auto quite a bit. Jasmine likes it too and when you sit her on your knee, she tries to touch the controller and join in the game. Whenever I steal a car and try to drive away I always crash into the police and end up getting shot. Jasmine pushing random buttons might improve my performance.

In total Jasmine drank from her doidy cup quite happily everyday for two whole weeks. Her vomiting started to calm down and we were getting her back onto solids – porridge, carrots, mashed potato and the like, when she caught a cold and was coughing up phlegm and lost her appetite. So, we had to put the NG down. Poor thing! She has been wearing it now, for about four days. The other day, the snot running down her nose was so bad that when she coughed, her NG slipped out. Yuk! I think she might have had a sore throat too – poor thing, as she would grimace when she swallowed. Imagine having a sore throat and a great big piece of plastic stuck in the back of your throat.

We went up to see my parents again and it was miles easier this time. We knew exactly what to take, we hired the same car and so we knew everything would fit, and it was easy to get ready to go. We took less stuff because we were more confident about doing dialysis elsewhere. And we had a lovely time. It was a relaxing break and now we are back in our own place, it seems that autumn is in full swing, all the leaves are changing and there is that coolness in the mornings. The other night when I put Jasmine on dialysis I noticed that it was dusk. I love autumn – my favourite season.

Yesterday, Jasmine seemed much better and when her NG came out we left it out for a few hours whilst we went for lunch with her Grandparents and then to the National Portrait Gallery. We carried her in our arms so that she could see the portraits and she squealed with delight as we wandered around. She managed two full feeds from her cup and only started to struggle around bedtime. In total she only lost about 10% of her feed in vomit yesterday – previously it was about 20% or more. We were so impressed. We put the tube back down just before we put her into bed as she didn’t want to drink anything else. But she was unhappy about the tube and cried herself to sleep.

So we are waiting for her appetite to pick up a bit more and then we will restart her porridge on a morning. It is all about patience in this feeding game – a bit like Grand Theft Auto.

The other big news is that Neil has fixed the light fitting in our kitchen – so we might have to crack open the champagne. The one in the bathroom will have to wait (what is three months between customers and customer care teams). We think Trevor our handyman has been kidnapped by aliens or is currently trapped under a heavy piece of furniture, otherwise we can’t account for the fact he isn’t returning our calls.

Relaxing at home

Wednesday, September 10th, 2008

My big girl

It has been a very tiring two weeks since we came out of hospital. What with running about constantly picking up antibiotics and the community nurses coming in (or not as the case may be), I was very glad when Jasmine’s course of antibiotics came to an end. She was vomiting loads more than usual and also had a big rash all over her back and legs – we think due to the antibiotics. So this week is all about settling back into a routine. Saying that though, this morning she had her Hep B part two injection and will no doubt be vomiting and thrashing about later on, as it didn’t agree with her last time.

On Monday, we went to GOSH and I was a bit worried on Sunday as Jasmine hadn’t gained any weight at all for three weeks. Admittedly she was on antibiotics for two of them, but whenever Jasmine doesn’t gain weight I feel like I have let the team down. I know this is silly as everyone at GOSH always tells us that we are doing tricky stuff and give us lots of positive pep talks. Anyway, Jasmine may not have put on weight – she is still 5.5kgs (12lbs) – but she has grown and is 62cms long. And she is filling out. Some of her clothes are too short and she is bursting out of some of her babygros.

After clinics we went to the champagne bar at St Pancras. Neil and I have been trying to celebrate our wedding anniversary for days. Each time we tried to do so, something would happen like one of the dialysate bags would split or we would run out of antibiotics and have to sprint off to the hospital. Sometimes it seemed to happen literally as one of us stood there ready to open a bottle of something nice to have a little party. We managed a little celebration on Monday, finally!

It was funny in the bar. We were sipping away on our bubbly (Pol Roger) and had propped Jasmine up so that she could see the Eurostar trains and people would wander by and say things like, “Oh never too early to start on the good stuff,” etc. We had a lovely afternoon and I went to sleep for a couple of hours when we got home so that I was fit and raring to go on dialysis duty after our celebrations. We have been married six years now so it is getting pretty serious.

Yesterday, we took it easy and enjoyed relaxing at home. Jasmine was still super pukey but she is still drinking out of the doidy cup and has had her NG out for a week now. At clinic Jasmine gave the doctor a drinking demo. She was very impressed and said that it is rare for a renal baby to have an appetite as they behave like anorexics (not anorexic nervosa : people starving themselves, but the medical anorexia: reduced appetite because of a medical condition such as ESRF). So, it is good that Jasmine appears to have some appetite.

This week we are giving her extra sweetened water (three spoons of maxijul in boiled water = 25 kcals) whenever she is thirsty, especially when she is on dialysis as that is the time she is the most vomity, and lots of milk. She is back on porridge too. We are building up to other solids again, after she lost her appetite on antibiotics.

We have been feeding her more slowly, which is quite difficult with the doidy cup as she gulps the milk and wrestles with you and won’t let go of it and reaches out for the cup when it is in sight. We lie her on her front straight after a feed for about 15 minutes and that really helps. It allows her to digest her food and somehow stops vomiting – it is magic. She is happy in this position. Earlier when I picked her up to put her back on my shoulder she started to cry. I had to put her back down on her front – well whatever works.

Doidytastic: Three days NG free

Tuesday, September 2nd, 2008

Jasmine and Neil without the NG

Jasmine managed three days without her NG, drinking out of the doidy cup and was doing really well. It was relaxing too just pouring milk into a cup and giving it to her to drink. No need to carry about: 20mls syringes, a backpack of milk, a food pump, a flush of sterile water, and tester strips. No, just pop the milk in a cup and watch her guzzle away – what a doddle. It was a nice break. It was also very nice to be tubeless so I could see that people stare at Jasmine because she is absolutely the most gorgeous thing in the room/tube/bus/street. Moreover, after they stare they come over to tell us that. Four people did today when we went for a morning coffee and yesterday she impressed a lady in the library with her cup drinking talents.

Tonight, we put the tube down because she was going to miss her daily feed target. This is because she is still on antibiotics and also nystatin (to prevent thrush – a common side effect of antibiotics), which we put in her mouth. Nystatin makes her vomit more than usual and vomiting is quite tiring and reduces the amount she keeps down. When she is on dialysis she vomits more and feeds less too, so it is harder to get her to drink from her doidy cup. Normally we give her a feed before we go to bed and then when she wakes at 6am. She was only drinking half of what we give her, because dialysis leaves her feeling full and a bit pukey, and last night I had to wake her to make sure she met her daily feed target. And since she is on dialysis for 13.5 hours, we don’t have enough hours not on dialysis to get her feed down her.

Anyway, the NG is back down, she wasn’t impressed and coughed a lot, but didn’t cry when I put it down. I did it really quickly and I think she was more surprised then anything even though I did it alone (normally Neil holds her) and she was trying to pull it back out of her nose, in a very cute fashion. Now she is snoozing away, drinking her milk through her nose and we have all relaxed.

Feeding her via a cup is just fantastic and now we have the tube down, it takes the pressure off so we can all relax and enjoy feeding time again safe in the knowledge that we are guaranteed to give her all the feeds she needs.

Bad care in the community strikes back

Tuesday, September 2nd, 2008

The community nurse team leader rang me on Monday to tell me that I had categorically said that I hadn’t wanted bad-attitude nurse to come round my house. I begged to differ. She spent ages telling me I had said that three months ago because she had written it down on a piece of paper (“I want respite from you,” is what I said and she has a variation on this written down). She dug it out of her files just before ringing me up to annoy me (sorry, provide me with care between the hours of 9-5 Monday to Friday).

I eventually raised my voice and said that I didn’t care what she thought this meant or who comes round – my girl has no kidneys and needs antibiotics and I wasn’t doing the he said, she said thing and I wasn’t going to argue with her. (This last line I learnt off my mother, who is fantastic and has an answer for everything, and it is a line guaranteed to cause a row in an empty house.)

Team-leader nurse said that bad-attitude nurse felt really bad about the whole thing. I said that she couldn’t have felt that bad because when I feel bad, I pick up the phone and apologise. Ding-dong! I will spare you the rest of the conversation as I want to spontaneously combust everytime I think about it.

In the end team-leader nurse apologised to me again (sigh) and agreed that the community nurses add to our stress levels and could I please forgive them. I hope she was writing that down on her bit of paper ready for when she fishes it out again in three months time when she is spoiling for a row (sorry, providing me with care between the hours of 9-5 Monday to Friday). But I will win that round because I have posted what was said on the big bad internet and will tell her to go google herself.

Anyway, the nurse who came on Sunday arrived on time and did a great job. I felt a bit sorry for her as it was her day off, but she was very cheerful. Then she came this morning at 9am on time and was great. She will come on Thursday for the last lot of antibiotics and that will be great.

So, I am glad I have got all that off my chest and it makes a nice change from slagging off dieticians.

Oh yes whilst I am banging on about stuff, I have finally started my yoga again every morning. I am only doing 10 minutes a day – but I am doing it everyday and that is a great start. It wakes me up and gives me loads of energy. I am so ready to wrestle with anyone I need to, in order to get my baby the care she needs.