Archive for January, 2010

Neil: Sleepy babies

Thursday, January 21st, 2010

The girls in their dressing gowns

We had a busy day down at clinics today. When we got back there was a parcel with two lovely dressing gowns for the girls (thank you Sarah!). We gave them both a bath and got them ready for bed. They both look really tired as they had both kept us awake last night as well.

We saw the transplant surgeon who explained what is going on with the kidney dilatation. He said that the dilatation was very mild and not to worry as they will keep looking at the creatinine level, and send us for ultrasounds every three months to check that everything is stable.

Her x-ray on her hips was fine, so that is good. Hopefully she will hop up and start walking soon.

Jasmine has developed a rash on her face. We don’t know whether it is an allergy, or something else. We got some cream for it from the chemist. Jasmine had also recently started a new shampoo, so we have changed back to the old shampoo, in case that had anything to do with it. The other day she tipped her water bottle down herself while we were outside in the freezing weather.

Jasmine’s blood levels required some tinkering too. We are going to give the Magnesium twice a day rather than three times. Her Tacrolimus level is now a bit high, so we are going to give 7 mls in the morning and 8 mls in the evening. Her iron is also a bit low, so she is back on Sytron. I thought that we had seen the last of the Sytron, so had taken the old used bottles back to the chemist. We went to the pharmacy to drop off a new prescription and had to come back in an hour, so we went to get a sandwich, croissant and coffee for lunch.

Yesterday we all went to the dentist. It took mere seconds to check that Calista’s two teeth were in order. It was more difficult to check Jasmine, as she would not open her mouth, and had to be bribed with stickers. Jasmine’s teeth look fine, which is good news. With Jasmine vomiting twenty times a day for 18 months the dentist said she might have had rotten teeth from the stomach acid, like bulimics. Ruth and I both needed fillings – yuk!

Neil: Mild dilatation

Tuesday, January 19th, 2010

 Jasmine asleep on the floor

Jasmine had a busy day today going out and about. She did not go for a nap all day and fell asleep this evening before we could get her into bed. The tape holding the NG-tube down was all loose today, so we took the tube out after her dose of tacroliums. Jasmine did not eat or drink much and Ruth forced the tube back down, to much screaming, in the evening.

 Calista in her pudding suit

Calista had lots of naps today, so was less easy to get settled. She looked very cute in her Christmas pudding sleep suit (thanks to Auntie Zoe).

Jasmine went for an ultrasound scan last Tuesday after clinics, to check whether everything was OK after the stent removal. The consultant was not very reassuring and said that the kidney had some mild dilatation. There was nothing to be done that day, but Jasmine was going to be discussed at length in the next doctors meeting. We spent a few days worrying over the outcome, and being unable to get hold of the doctors. We know that this means that everything is OK and nothing needs to be done, but it is impossible not to worry. Nothing is going to be done surgically, as there does not appear to be any pressure on the kidney itself, which would cause damage over time. We will keep an eye on it, and hope that Jasmine’s creatinine levels stay low. Jasmine also had an x-ray on her hips, as she isn’t walking yet and her joints are very flexible, but due to a mix-up we ended up waiting four hours, by which time our nerves were completely shot.

Jasmine and Calista have colds and keep waking up in the night. Ruth is up at all hours, but doesn’t mind too much (apart from the tiredness) because she has been texting her night time feeding buddy, who is also up feeding her baby.

We finally sold the chaise longue. The lady who bought it was thrilled when she saw it, so it was a pleasure to see that it was going to a good home. We didn’t want want to see it go! It was very heavy, and difficult to carry out of the flat, but that could have been because Ruth was still clutching onto it. It was lovely, but now we have much more room in our flat.

Neil: Feeding schedule

Thursday, January 7th, 2010

Jasmine had clinics today. We haven’t been to the hospital for two weeks over Christmas and the New Year, which has been brilliant. There has been lots and lots of snow lately. But as we only had a short distance to travel, we had no problems getting to the hospital. We were very impressed with ourselves, until we discovered that half the hospital staff hadn’t been able to get into work because of the snow. There was no phlebotomist, and hardly any patients either!

We saw the transplant surgeon, and he cut the stitches on the stent and pulled it out. It looks good this time, and Jasmine still has wet nappies, so hopefully there is no reflux into the kidney this time, and Jasmine can avoid a surgery. Once the real work was done the surgeon gave us a training session on the different instruments in Jasmine’s toy medical kit. Jasmine has to go back for more bloods and an ultrasound next week, so hopefully that will all be clear.

The speech and language specialist tracked us down specially, which was very kind of her. Jasmine is still only eating a tiny amount, vegetable samosas, Ritz crackers, or panini. She bites with her incisors, and moves food about on her tongue, but she doesn’t use her molars, and hardly ever swallows anything. The specialist is going to refer Jasmine to the eating disorder team at Great Ormond Street. Hopefully, they will have some ideas on how to help Jasmine to learn to eat. Before transplant she vomited every time she ate anything, which has no doubt rather put her off eating. Since transplant she has only vomited when we put too many medicines down her NG tube, or overfeed her.

Jasmine has lost some weight due to her diet. She can move about more easily now, and is trying to pull herself up on things. She wants to be in with everything at the moment, doing the washing up, brushing her teeth, getting in the bath. Jasmine shuffled up to the bath one evening and started pointing and shouting, when we had decided just to wash the girls instead of putting them into the bath. So, I said, “You don’t have to go in the bath everyday, Jasmine”, and she shouted, “Everyday!” and carried on pointing at the bath and her towel. She has a lovely In the Night Garden towel which she won’t let go of, even when she is dry.

Neil: Snappy New Year

Saturday, January 2nd, 2010

 Calista with her hat

Happy New Year! Last year Ruth let in the New Year after a bit of a discussion and her promising me that we didn’t need to bother. This year she again said that she wasn’t going to stay up. However, at 11:58 pm she changed her mind and jumped out of bed and out the door. Ruth let the old year out the window (we don’t have a back door) and we opened a fresh bottle, cut a cake and hopped back into bed.

The girls were not too impressed with their Christmas hats from their crackers at lunch today! Calista kept hers on for a while, but Jasmine refused. Calista is taking to eating, she ate some crackers, rusks, carrots and roast potatoes. She eats pretty much anything put in front of her, which is brilliant, but a bit sad as it shows us how tough things have been for Jasmine.

Jasmine sucked on a Ritz cracker but enjoys feeding the three of us more than herself. She has however taken to drinking tea from my mug, which is funny. She is so much fun, which is what we needed after watching The Girl That Never Ate on TV the other day. We had been looking at the Graz clinic featured in the program to see what they do when weaning kids off NG tubes. We had forgotten what a long process we went through the last time we weaned her. Some days were just spent giving her milk to drink, a feed could last two hours, until one day she started to drink her milk normally and sometimes would cry for milk as she was hungry. It is a bit disappointing, therefore, that after nine months of drinking milk normally and a new kidney, she isn’t interested in eating or drinking. Hopefully, she will begin to show an interest one day. Until then, we just have to keep trying.

 Jasmine with her hat

Calista has been waking up in the night every couple of hours, so we have been getting less and less sleep, but the last two nights, after leaving her cry for a few minutes, she has only woken up twice which is a big improvement on five times.

Now that the new year is here and we don’t have to wait up to celebrate things, we are looking forward to a few early nights and more sleep. Rock and Roll!