Archive for April, 2009

A sad day

Wednesday, April 29th, 2009

Jasmine watching in the night garden

Yesterday was a sad day. My Auntie Yolande died in the early hours of the morning. I have been a bit weepy ever since I found out. Each time someone special dies, it makes me sorry that Jasmine won’t grow up knowing that person.

Jasmine and I both have rotten coughs now as part of the never ending process of clearing out this horrible head cold she got three weeks ago. I feel like I want to throw up everytime I cough and so I quite understand why Jasmine does. However, yesterday we managed to reduce her vomiting back down to its normal 100mls a day and are hoping that we can do the same today. A lot of what she is throwing up today is horrible mucus, so I feel really sorry for her, and am impatient for this cough and cold of hers to completely disappear.

We are determined to get this vomiting sorted though because it will help her sodium bicarbonate levels which are far too high and she is hypokalemic, which means that her potassium levels are too low, which in turn can lead to cardiac arrhythmias, something we don’t want. So, we are going to work hard again today. We have started again with the acupressure and feeding Jasmine smaller amounts more often – two things we let slide a bit when we were all so ill and just standing up was an achievement.

As I write this blog, Jasmine is watching ‘In the Night Garden’ and I gave up trying to get a picture of her looking at me, so I took a picture of how she looks when she watches the TV, which is rather funny. She is unimpressed with her runny nose and me wiping it though.

Everyone keeps telling me that I am a different shape now, and that it looks like the baby has dropped, so I guess it won’t be too long now. I do feel like I have more space to breathe and am going to pack my bag for the hospital today, in between doing everything I can think of to get my Jasmine to vomit less.

Neil: Sodium bicarbonate and alkalosis

Monday, April 27th, 2009

Jasmine’s sodium bicarbonate levels have been high for a while. This means that her body pH levels are higher than the normal healthy range of 7.35-7.45 and so her body fluids are too alkali. The doctors think that this could be because Jasmine has been vomiting too much with being ill and so has lost a lot of stomach acid. This leaves the rest of the body out of balance. It is better to be too alkali than too acidic though.

Another issue is that we have swapped to the two chamber dialysis bags. Single chamber bags are glucose based, which is acidic on the peritoneal membrane, and may cause damage over the long term. The two chamber system has a chamber of glucose and a chamber of bicarbonate, and you have to break a seal to mix the bags while setting up the machine. This gives a bio-compatible mixture at the same pH as the body.

However, using the two chamber bags on pediatric patients can lead to alkalosis. The first thing we tried was changing the dialysis program from 11 dwells over 12 and a half hours. Jasmine now has nine dwells of one hour over 12 hours. We have saved another 30 minutes, which is great, but we are a bit worried about the bicarbonate to fully appreciate it at the moment. Jasmine has been for U&Es (blood tests for urea and electrolytes) twice, and though the bicarbonate levels have come down slightly they are still too high.

The next thing to try is to reduce the vomiting. We have been trying to do that since Jasmine was born though. We are going to reduce the amount of fluids we give her and give them more frequently. Otherwise we may have to go back to the naso-gastric (NG) tube again. Jasmine has been feeding without it for 20 weeks now, which is unheard of. She is the only baby on dialysis at Great Ormond Street without an NG tube or gastrostomy. Jasmine vomited all the time with the NG tube though, so I don’t expect it to improve much. We may try feeding her from a bottle, rather than the cup, and see whether that makes it easier to spread the feeds out.

A tough cookie

Saturday, April 18th, 2009

Jasmine and Neil on the settee

Jasmine is one tough cookie. Neil and I both caught her head cold and my goodness, we were ill. I was in agony as I couldn’t take anything at all and felt very jealous of Neil drinking lemsip. It felt like someone had banged me over the head with a shovel. I was constantly doing neti and drinking hot lemonade and going for lie-downs, at which point Neil would get out of bed do some neti, drink some lemsip and take over looking after Jasmine. Neil has been so ill he has been going to bed in the afternoon – something he never, ever does. It has been a tiring week.

Jasmine who had the head cold first, carried on as usual, singing, laughing, and teething – she has three molars coming through. She kept on drinking her milk and any other fluids we gave her and we gave her a lot, as her blood pressure has been a bit too low to put her comfortably on dialysis, so we have been keeping a close eye on that and letting her drink lots of milk and glucose water.

Yesterday, though she looked really good for the first time in weeks and today, apart from the hacking cough she has, she looks content. At the moment, she sitting watching a bit of Formula 1 with her dad and drinking her milk. Neil is not particularly into Formula 1 but he is obsessed with sunshine and this race is in Shanghai. He likes to watch anywhere hot and sunny. Even his hunt for a ‘manly’ Yoga DVD (he is bored of prenatal yoga) has as its main goal an outdoor sunny backdrop.

Lately, Jasmine has been taking an interest in food. She has been eating Pringles, which she does with gusto and then she crumbles them and throws them on the floor. And she quite likes banana dessert. Neil and I take different approaches to feeding her. I give her whatever I am eating whereas Neil buys baby food that he thinks he might like.

So at the moment, Jasmine likes Pringles, shortbread and chocolate biscuits, Haagan Daas ice-cream and a mouthful of home-made Ayurvedic vegan carrot cake. Neil likes Boots baby banana dessert, Organix baby apple and peach puree, baby oat and berry bars. I think Jasmine likes ice-cream because it soothes her gums. Unfortunately, Neil ate the rest once he got bored of baby food.

The dietician said at our last appointment that because Jasmine eats very little food it really doesn’t matter what we give her. It is just important to encourage her interest in food. And it is much easier to get a few extra calories down her with half of chocolate biscuit or a spoonful of ice-cream than the equivalent in super-rich milk, especially when she is fluid-restricted (and not ill).

It was a shame that we were so ill and in bed as we had no hospital appointments and we couldn’t take advantage of the free time. This week coming up we are back to our usual round of clinics: Jasmine and ante-natal, and bloods and doctors, so we will be roaming between hospitals and sitting in waiting rooms.

Neil: Happy Easter

Sunday, April 12th, 2009

Jasmine with her Easter egg

We are happy to be at home this Easter.

Last night, Jasmine spiked a fever of 38.8 and after an hour of freezing with the windows open it had still not come down, so we took Jasmine to the hospital to have a sample taken of the fluid in her peritoneum. The white cell count came back at 25, well below the 100 limit for starting treatment with antibiotics.

However, her temperature was still 38.8 and her pulse was 160. The registrar examined her and said that she had a head cold and cough which would make her febrile and that ideally they would keep Jasmine in and treat the fever and observe her until her temperature went and pulse came down to 120 or 130. As it was already 10:30 pm and our dialysis machine was waiting at home ready to go, we thought we would take her home, connect her, and keep an eye on her there. The registrar and nurses, as always, were really lovely and understanding, and after discussing it at length, they let us go home and told us exactly how much Calpol to give her, and how long the fever should last, and to ring them if we were at all worried.

On the ward there were several tiny babies and their parents. Ruth got a bit teary as it reminded us of the tough times we have had and how difficult it must be for these new parents at the moment. Our hearts go out to them.

We got back at 11:00pm and by 1:30am Jasmine’s temperature was normal and her pulse was back down to 130 so we all went to sleep. The lovely nurses on the ward rang us today to see how things were. Jasmine is much better, albeit with a cough, cold and snotty nose.

We were so relieved to be able to go home that we told the black cab driver that we had come from the hospital and why we sometimes have to make midnight dashes. He very kindly refused to take the full fare for bringing us home, even though we insisted.

Yesterday was a day when people were very generous with us. Ruth had a free pedicure from the new beauty salon which is opening up in our complex (Ruth: My toes look great – not that I can see them).

This morning, we had a lazy morning, as Jasmine didn’t finish dialysis until lunchtime, so we had to stay in bed and eat Easter eggs. And then once we disconnected Jasmine, we had an Easter lunch of Greek salad that we had not had the chance to eat yesterday, and then I ate Christmas pudding.

Jasmine’s latest trick is that some mornings when she is bored of waiting to be disconnected, she takes hold of her catheter and passes it to one of us, as if to say: ‘Go on then, disconnect me.’

We have filled Jasmine’s little pink notebook, where we keep her daily fluid intake and vomit record, so yesterday we started a new pink book. This feels like a bit of a milestone. Jasmine has now been drinking without the NG tube for 18 weeks, which is amazing. And over the past few days she has been eating four or five spoonfuls of fruit puree as well.

A tiring few weeks

Sunday, April 5th, 2009

Grandma goes home

It has been an exhausting couple of weeks. Grandma left last week and it was sad to see her go. We hoped Jasmine was feeling better with the vomiting and horrible diahorrea, after our hospital visit ruled out any kidney related illness, but it wasn’t to be. Things seemed to get a lot worse, including a great big horrible rash that she got over her legs, arms, and face.

Luckily, as we were wandering around the train station putting Grandma on the train, we bumped into one of our lovely nurses from GOSH, who even though she was on her day-off was fantastic and gave Jasmine a medical exam outside Starbucks and calmed our fears about the rash, which is typically post-viral. So that was good. I was worried that it might be mild measles or something from the MMR, because I had looked up rashes on the NHS direct website which was very vague and didn’t say (as our lovely nurse did) that measles after the MMR jab is quite rare. It just said oh yes your child might get measles 7-10 days after the jab (which fitted Jasmine’s rash) or mumps or german measles.

So throughout the rest of the week, we gave Jasmine loads of fluids as the horrible end of the virus worked its way through her body. She was pooing and puking day and night, but she never stopped drinking her milk and more – glucose water, ordinary water, in fact anything we gave her, which was quite amazing. The poor thing must have been dehydrated some days, even though we were checking her blood pressure more than usual, but it is so variable depending on whether she has had a vomit or a poo, or whatever. We just made sure she had loads of fluids as we didn’t want her to be a crispy baby on a morning after a night on dialysis. And sometimes in the night we would whip out the blood pressure cuff and do a quick check.

Today, Jasmine seems back to herself or thereabouts. Her weight is back up, and her vomiting is back down to its normal (rather large) amount as opposed to the abnormal scary amounts, and the pile of washing going into the washing machine has gone down to its normal once or twice a day as opposed to the three or four when things got really bad. We are relieved. Today she refused some milk for the first time in days, so she can’t be dehydrated anymore. Hallelujah! She also ate a couple of spoonfuls of fruit puree, so that was amazing.

In the middle of this, the hospital where Neil has had a load of tests rang several times over various test results and new tests. And then one of my relatives was rushed into hospital and is poorly. And, then someone suggested some VBAC (vaginal birth after caesarian) websites for me to read, which I would never do normally.

Unfortunately, they weren’t the happy successful stories that the person thought they were. Let’s face it, if you have a happy experience you just live it, you don’t write it down, you only write down the bad stuff (ah yes, I know all about that). So, I read some really frightening scary horrible childbirth stories which made me first hysterical and then really angry, as I have avoided random websites about any medical condition since Jasmine was born, because you can die of fright reading them. Anyway, got over that and my top-tip to anyone is don’t read forums about medical stuff, and try not to be rude to the people who send you the links.

I also keep getting random women coming up to me in the street and then we have this kind of conversation:

Random woman: Oh my God, you are pregnant, when are you due? How old is your baby?
Me: Next month. 13 months.
(Well this bit normally takes much longer and does have a few ‘how cute is your baby’ and ‘you look so well to be that pregnant’ bits, which I quite like as sadly, I am vain)
Random woman: Oh your daughter looks so much smaller.
Me: *Big bad stare*.
(this is not the way I want the conversation to go, where are my compliments?)
Random woman: Did you plan this?
Me: No, it was a pleasant surprise. My husband is disappointed it’s not twins.
Random woman: Blah, blah, blah….
(which extends into big rant about insensitivity of my husband how rude!)
Me: *Polite fake laugh*
(whilst hunting round for an exit)
Random woman: Well you are going to have your hands full. How will you cope? I only have one child, but it was a nightmare, my friend has two and she can’t cope at all, blah, blah, blah, blah…..etc…
Me: Bye then.
Random woman, gabbling on, grabbing my arm as I try to flee: Good luck, you are going to need it, with all those babies, oh my God….

And then I am off – I can run quite fast for an eight-months pregnant lady pushing a buggy full of baby and shopping.

Neil always says that people don’t know the half of it. And it is true. Because the idea of us having a baby that doesn’t vomit everywhere and doesn’t need to be plugged into a machine for 12.5 hours and you don’t have to count (or force down or restrict or pump through her nose) every milligram of specially prepared to a specific recipe milk that passes her lips, to say nothing of the medicines, dressing changes, and injections, seems like such a delightful idea, so much easier to look after, it is hard to get too worried about having your hands full. And I wouldn’t moan about the baby we do have to do things to either. Jasmine is such a delightful girl. She is cute, and smart, and beautiful. And we love her to bits! And I am thrilled to be her mother and to be pregnant.

I do feel we have learnt a lot about ourselves just lately. It is amazing, it doesn’t matter how bone-tired we are, Neil and I always manage to stand up and do whatever needs doing for Jasmine, whether that is dialysis, injections, trips to the chemist/hospital/doctors, nappy-changing, cot-changing, clothes-changing, dialysis orders, deliveries, whether that is at 4am or 4pm. And we do know our Jasmine really well, and understand a lot more about dialysis, blood pressures, weight and why we do what we do everyday, a lot more than we used to.

The new baby is kick, kick, kick now so I am not sleeping that much in the night and wander about quite a lot. Neil suggested that I go back to bed today, so I did and slept until 1pm. So poor Neil didn’t get his Sunday lunch until 3pm as he waited for me.

This week we have another round of blood tests, scans, consultant appointments, counselling and all the rest of it at various hospitals, so we are just making the most of relaxing today, before dialysis and dressing change time kicks off. Oh, Jasmine has just started complaining about lying in her cot – she was supposed to be napping – so I am off to play with her, since she says ‘Mam mam mam mam mam mam,’ all the time and enjoys being kissed (don’t we all?).