Archive for May, 2008

Sitting pretty

Saturday, May 31st, 2008

Jasmine in her new chair
Jasmine has a new chair and can sit up straight in it and only leans to one side when I take (lots of) pictures of her. Her new chair is great but she doesn’t sit in it for very long as we think she is so cute in it we have to pick her up for cuddles.

On Thursday we went to see everyone at Neil’s work.It was lovely to meet all the people he has mentioned over the last year and it was extra lovely to spend some time with people who knew all about Jasmine and so I had a whole day free of explaining what was wrong with her.

Before we went out on Thursday, Jasmine had pulled her NG tube so we spent the day tube free too. It was good for me to see that people stare at her a lot without her tube, and it is not the tube that they are staring at necessarily.

Thursday night was a bit of a stress because I put the tube back down her nose as Jasmine screamed to let me know she hated it. And then, an hour or so later she vomited so hard, the tube came up too and I had to repass it. I stuck it down good and proper as passing it twice in an hour was all a bit nasty and I felt like an evil mum. I made up for it during the night as I decided to pause her feed for an hour before I went to bed and that seemed to work really well. She only vomited once in the morning. So it seems that pausing her overnight feed gives her time to digest food and she is sick less.

Today we had a trip out of London to Welwyn Garden City. It was great to go somewhere that seems empty compared to central London to get a bit of shopping done (it is never ending the stuff you need for a baby on dialysis and I hate shopping at the best of times). We were showing Jasmine the fields and horses on the way, even though she probably had no idea what we were talking about. She was more interested in her milk.

Neil bought Jasmine a book full of lovehearts, mirrors and the word daddy! To catch up I sat by her cot whilst Neil was doing his sterile handwash this evening saying mammy, mammy, mammy, until he caught me in the act and after connecting her, got his subliminal brainwashing book and put it in her face. Who can tell? Her first word will probably be domperidone or peritoneal dialysis or something.

She is doing lots of stuff now: She reaches out and grasps things like her tube and her blankets, she lies in bed clutching them to her chest. And she pulls her dress and bib up over her face. The other day she rolled over onto one side and impressed us no end.

Puksey-cutsey

Wednesday, May 28th, 2008

I spoke too soon. Jasmine vomited three times in the night: 1am, 4am, and 5am. And then at 6.30am it seemed as if the milk was flowing down her nose, into her stomach, and back out through her mouth. I switched the pump off, as I couldn’t face it anymore and I was knackered and the pump is so rubbish. I am going to do a user experience (UX) critique on it and put it on my technical blog as soon as I can write sensible things in a professional manner, as yesterday I told the community dietician that in my professional opinion it is crap. With a bit of thought (and you don’t have to be a UX consultant), the pump could really easily be improved, e.g.,

  1. Don’t put the information button (which tells me how many mls before she reaches her target) next to the on/off button. If you must, please have luminous buttons which glow in the dark.
  2. Don’t beep at me every eight seconds when I put the pump on hold – I am not a goldfish and would like to set my own beeping defaults.

Jasmine threw up just mucus before her 9am and then milk after it and her 12noon feed. So we had several outfit changes before we left the building. Her rhinestone jumpsuit is now in the wash.

She has been home three weeks today. To celebrate I took her to the baby clinic to get her 2nd set of vaccinations. She cried a little bit, but was generally very good. I cried more. They wanted to weigh her and I refused and there was a bit of a kerfuffle until I explained that her kidneys don’t work and having to say it out loud when I was very tired made me cry. I mentioned that I have to weigh her twice a day and all of that so could you write that figure down in the red book. No they couldn’t as she hadn’t been weighed there. I understood (and will write my own damn figures in the damn red book since it is just a record for me) but it just reminded me of all the silly things I have had to listen to over the past few days by people who are supposed to be supporting us, so I burst noisily into tears. Result: they let me jump the queue and get her jabs done next. They were very nice to us saying that they imagined that we wouldn’t want to hang about and we didn’t have to have a doctor’s exam either. Suits me fine.

Jasmine was brilliant for the rest of the day. No more vomits and was crying this evening when we put her down and I think she was hungry as she had missed some of her required amount. We have started her overnight feed early to catch up.

We spent what was left of the afternoon lying on the bed listening to the radio. No phones call – bliss! I popped in the beauty parlour after the jab clinic today to see what nice things I could use as a pick-me up. I can no longer wear nail varnish on my fingernails whilst doing sterile handwashes for dialysis so I might have either a pedicure or a full body massage. Alternatively, I could save my pennies and paint myself orange and run naked up and down the street to let off a bit of steam. I just can’t decide.

Care in the community

Tuesday, May 27th, 2008

Jasmine and I left the house this morning at 11am to go and see our lovely doctor. She was supportive as always with lots of practical advice, unlike the community nurse who keeps coming round and telling me that I am going to get very tired, down, and depressed and need respite care. She says it like a mantra. When I imagine her saying it, I always picture her rubbing her hands together with glee. The reason she was so late last week was that she was sitting in her office typing a letter. Such is life!

Today, Neil and I asked for training on how to give Jasmine her weekly injection. We start training this week.

After the doctors, Jasmine and I went to the V&A. It was lovely and relaxing. The first time in days I felt free and away from it all. It didn’t last long, another community nurse rang up, followed by the community dietician, and then later another nurse. Eventually, I had had enough and told them that yes, I do feel tired, down and depressed and need respite: from them.

Jasmine loved the Robert Adam section as it was full of red and gold. She also loved the cafe downstairs with the big balls of fairy lights. She stared at them for ages and got lots of compliments from passerbys, including the Les Dawson Cissie and Ada ladies on the next table who thought I couldn’t hear them when they were saying in a stage whisper: “Look at that tube in her nose, she must be really ill, poor little mite” and pointing at their noses.

I feel very tired tonight. All this care and attention is exhausting. Jasmine only had a couple of small vomits in the night last night and then this morning a little mucus vomit and has been fine all day. I am thrilled. We have been tinkering with her feeds in the night and during the day to hit on a balance that she gets her full calorie/fluid total but doesn’t vomit it up because it is just too much for her. I spent a lot of yesterday with a calculator trying to figure out optimum mls per hour over 24 hours. So we will just see how we get on, renal babies vomit a lot so today’s result is spectacular.

The Sound of Music

Monday, May 26th, 2008

Shocked Jasmine
So it was raining all day today so we stayed in and have done all our chores on one of our busy days (bath, dressing change, dialysis, medicines, feed preparation). Nothing new to report today, we are just enjoying time together as a family and Jasmine absolutely loved watching The Sound of Music.  She couldn’t take her eyes off the television.

Taking a load off

Sunday, May 25th, 2008

Lazing about

It was raining today so we stayed at home and relaxed.

Yesterday was what we call a ‘busy day’, when we have to change Jasmine’s dressing on top of setting up her machine, connecting and disconnecting her, and drawing up her medicines. It didn’t feel busy at all as we did everything in the morning and wandered about in the afternoon, enjoying the sunshine. The more practice we have, the easier everything gets. I am even really into the three minute handwashes – it is like having a mini-meditation. And the good part about changing Jasmine’s dressing is that we can give her bath beforehand, knowing that if we get her dressing wet we will be changing it. Jasmine enjoys her bathtimes.

She is able to do lots more nowadays. She tries to hold her bottle sometimes when you feed her and reaches out for things and wraps her hands around them.

Last night, she reached for face and pulled out her NG tube. She must have been working at it for a while as it was taped down good and proper. Tonight, she vomited it up, poor thing. So we have had two days of NG repassing practice. It gets easier each time and is better than going down to the local A&E, which we would have had to do if we hadn’t had training. Especially since she was on her dialysis so disconnecting and getting organised to go there and then probably waiting a while, would have been a real drag. At home we repassed it in a couple of minutes. It is great to have some control over things and just fantastic to be able to take care of our baby girl at home.

Conquering self

Friday, May 23rd, 2008

Jasmine with her Baby Einstein
I had one of those days today which made me feel that if I had better control over myself then I would not get so worked up, upset myself and spend the day in a tizzy. I should take a leaf out of Jasmine’s book as she was sitting there all day, her usual happy self, watching me get my knickers in a twist.

Jasmine is into her Baby Einstein in a big way. She loves the links (thank you, Christine and Dick) on her buggy and reaches out and touches them a lot and licks them when she is hungry and falls asleep with her hands stuck in them. She also loves her Uncle Andy’s underpants on the cot and goes to sleep to the music.

The day started early, Jasmine vomited at 5.30am and then the food pump finished at 7.30am and then our dialysis delivery arrived at 8am. These guys are brilliant! They arrive when they say they will and deliver what you need and find their way to your flat carrying lots of heavy boxes.

The community nurse rang up at 9.30am saying she would be there at 10am. She arrived at 11am and had forgotten some things. She said she would be 10 minutes and came back an hour later. She finally left at 12.30pm.

Then Frenesius, the food pump delivery company, didn’t deliver what they said they would (giving sets which we put milk in and connect to Jasmine’s NG tube for her overnight feed) so I had to phone them up and the woman on the phone couldn’t be bothered to understand what our surname was and asked questions about my order which demonstrated that she had no idea about what her company supplies. At this point I was quite cross and went downstairs to bollock the concierge for signing for two items when we had only received one. The concierge was quite contrite so I went back upstairs and bollocked Frenesius again. They are sending out another delivery tomorrow. I will believe it when I see it.

I unpacked my shopping which I had dragged all the way back from the supermarket and realised that the checkout operator hadn’t removed the security tag from the bottle of wine that I had bought so I will bloody well have to return it. My Godfathers! It really was the last straw. No wine.

So, Jasmine and I had to watch Hairspray to calm my nerves. Jasmine was her usual chilled self and enjoyed the catchy tunes. By the time I was calm, it was later than usual to put Jasmine on her machine. She was tired and cross and had a temperature (37.6). I had a melt down for ten minutes until I pulled myself together and took some deep breaths and Neil took over and put her on. We waited an hour and her temperature had gone down to 36.4.

I really must start doing my yoga again as it has fallen by the wayside since Jasmine came home. Yoga will be good and not only for my nerves: I tried a dress on today and it wasn’t very flattering at all. I am chubby round the edges and felt a bit down about this so I stuffed my face with lots of lovely chocolate caramel shortbread to cheer myself up.

Two weeks at home

Thursday, May 22nd, 2008

I am sitting in the bedroom typing this with a nice glass of red wine. Jasmine is snoozing in her cot. We have bathed her (as she was a bit crusty from all the vomiting), changed her PD dressing, and put her on dialysis. And this feels like the first time I have sat down all day (which just isn’t true). It is lovely sitting in here. Jasmine is peaceful and the room feels really nice. Neil is in the other room on a conference call to America for work and before it started I got the chance to speak to his very nice colleague Leonardo (Hello Leo!!).

So, we have had Jasmine at home for two weeks. It has been fantastic. Last night, whilst congratulating ourselves about it and doing her observations, we discovered that Jasmine had a temperature (37.9). Aargh! If Jasmine ever runs a temperature and is vomiting during the day we must take a sample of her peritoneal fluid to the hospital to test for peritonitis. Because we are using the peritoneum as a big kidney, she is at risk of infection. So, taking a sample of fluid enables the hospital to test it for her white cell count and see what is going on in there. If the cell count is raised she would have to go into hospital and spend 48 hours on continual dialysis. And in a worst case scenario of serious infection, her catheter would have to be removed and we wouldn’t be able to use the peritoneum at all.

After I had lived through the above scenario and lots of others in my mind, her temperature came down – it must have been due to the hot day. It was boiling in the flat and Jasmine and I had had a lazy time lying on the bed listening to Radio 4′ Listen Again on the internet and discussing at length whether we thought Cherie Blair’s autobiography serialised on the radio was any good (we didn’t think we would be rushing out to buy it). So, Jasmine must have just been a bit hot when we took her temperature. Neil and I didn’t believe it was that simple and spent the evening (in between watching the footie and John Terry crying, I ask you) taking her temperature and bickering amongst ourselves about whether we were doing it correctly. Six temperature takes later we were satisified that she had just been hot and we didn’t need to rush down to GOSH.

Instead Jasmine and I went to GOSH today as I forgot to pick up her prescription medicines on Monday – too busy chatting. So we sat about in the pharmacy and received lots of compliments. I just can’t ever hear too many times how gorgeous my girl is. Then we toddled up to the ward to say hello to everyone. It was lovely to see the nurses and have a chat (I miss my chats) and they said that she had grown and was looking well.

We got back this evening and I tidied up, as this morning I did some reviewing for the EPSRC and was very pleased to have done something with my brain and to feel part of something. The downside of reviewing was that I left the flat in a tip as I wanted to make sure I got to the pharmacy in time so when I got back I had to fiddle about for ages straightening things up and hang up yet more washing instead of flopping on the couch. And then Neil came back early so we could do her PD dressing before his conference call.

Tomorrow we will get all our deliveries and the community nurse is coming round so it will be good to get an early night as the deliveries could start at 8am and no doubt Jasmine will be awake in the night. Last night she woke us up at 1am crying really loudly just because she had had a poo. What a drama queen. When she finished she went straight off back to sleep leaving Neil and I wide awake, dirty nappy in hand.

On strike

Tuesday, May 20th, 2008

I went on strike last night. I couldn’t face doing another thing and Neil had to take over when I downed tools and went to bed. I am ashamed to say that I was feeling sorry for myself. I didn’t follow my own advice about sleeping, eating and following a routine and got a bit overwrought. We were late getting Jasmine on her machine and into bed which made her overtired. She was fighting sleep and Neil and I had a bit of a bicker in the bedroom and Jasmine threw up. Neil made me laugh at this point by saying, “Oh no Jasmine, it’s not your fault.”

This morning after a good night’s sleep I felt much better. Being in the doldrums is such a waste of time, I am not doing that again. And poor Neil is knackered as he went on vomit-mopping duty during the night. Although, he kept sleeping on the job and needed supervision. You just can’t get the staff nowadays.

Yesterday, Jasmine and I went to the clinic at GOSH and Jasmine had her bloods and other checks done. Her blood pressure was high again whilst at the clinic (130) so they suggested putting her on stronger dialysate. However, last night when it came to putting her on dialysis her blood pressure was too low (78) so we left her on her usual program after much debate and phoning the ward and taking her blood pressure a million times.

Today I was doing random blood pressure checks and it was a bit all over the place: 90, 98, 74, 60 and then tonight it was 100 so we put her on the stronger combination. At the clinic they suspected that she is retaining fluid even though she doesn’t look like she is and her blood pressure is one of determining factors – hence, my checks. They also changed her medicines and the amount of fill fluid during dialysis. So with these changes I felt a bit lost. Routine makes me happy (never thought I would ever hear myself say those words) and even little changes seem to knock me off kilter. Although, I have less medicines to draw so that is one good thing. And she is vomiting less during the day.

Yesterday was also the first day that I was by myself at home and at the clinic so I had time to think about things. I had been warned whilst still in hospital that this might happen. In the hospital you feel normal as you are surrounded by people in the same situation but outside you realise that you are not ‘normal’ (if there is such a thing) as people look at you all pityingly (mainly ‘cos of her NG tube – cheeky buggers) and then once alone, you have time to dwell on less positive thoughts.

Today inbetween blood pressure checks I was doing a fluid balance – less glamorously put, I was weighing dirty nappies to try and figure out how much urine Jasmine outputs with respect to how much goes in feedwise. I am still not sure and might have to have another go another day.

My mate Wayne came for a visit and was highly amused when Jasmine pooed on the settee whilst I made a hash of changing her nappy – I was totally distracted by this nappy weighing business. It was nice to have Wayne here as I got to chat about other stuff and he got to see how we go about doing sterile PD dressing changes. Jasmine was mesmorised by him and was hanging on his every word about C# and Java, until she got distracted by her feet and was waving them about now that she has figured out that they are connected to her.

Her eyes are changing colour and are now a blue-hazel whereas before they were deep, deep blue. She goes to sleep when listening to Stan Getz but smiles a lot during Charles Aznavour. When Neil came back the other day from the gym she started cry and he reckoned it was because she was forced to listen to Charles Aznavour and that would make him cry too. But I know that really she was upset that we had to stop dancing because it was time for lunch.

Very tired

Sunday, May 18th, 2008

Jasmine ready to jump
Jasmine did a bit of vomiting in the night and then this morning was doing her impressions of Darth Vader. Poor thing has lots of mucus which we have decided is the thing that is making her vomit. When we aspirate her tube loads of disgusting snot comes back. It must be just sitting in her tummy making her feel sick. We propped her up in the cot by putting the cardboard triangle that was previously under her underneath the mattress and it works well. She has a comfy bed and no longer slides down the cot.It was Neil’s turn to lie in this morning but he didn’t really get much of one because of the racket she was making so in the end he got up when I disconnected her, just before the nurse arrived to give her an injection.

This afternoon Neil spent ages putting together the shoe rack. It looks great now it is together and is just the right size for dialysis equipment, but it was a bit of a torturous process so Neil was a bit cheesed off. I seemed to spend most of the afternoon taking things in and out of the washing machine. Then it was time to change her PD dressing and set up the machine and plug her in. And now the weekend is over and we are knackered. I am so going to get to bed early one night this week.

Our flat looks great though – no big boxes around the place anymore – we have space for the next delivery and we will start all over again trying to find places to put things.

Before Grandma Stalker left she figured out how to strap Jasmine into the buggy so here she is looking like she is about to parachute behind enemy lines wearing her strawberry beret.

Shoe racks

Saturday, May 17th, 2008

Jasmine waiting about
We have discovered that shoe racks are really useful for storing all kinds of medical equipment when you don’t have a lot of space. They are not very deep and can fit into awkward spaces. We are also discovering that it doesn’t matter how often you do the washing there is still a big pile of washing to be done.

This morning Jasmine pulled her NG tube out again and then this afternoon when I decided that it was ok to leave her wearing her bib like a superhero during a nap, she was sick down her front. I think it was the excitment of watching the FA cup final. She was sitting in front of the TV, staring at it as if she was following the action. She is really funny.