Archive for July, 2009

Neil needs a Bob Martins

Friday, July 24th, 2009

Jasmine gorgeous as ever

It was our dialysis delivery day today and normally I moan my head off about having to stay in but today, I was so glad just to be able to sit down at home and not be waiting in a hospital, doctor’s surgery, chiropodists, or chiropractors. Huzzah! I am glad all these places exist and look after us so well, but it is nice when you don’t have to go to them. I didn’t have much of a sit down as Jasmine kept throwing up everywhere and Calista was a bit grizzly too and vomited a whole feed back up. Neil has had an upset stomach which started the other night and has left him feeling ill and weak so, I think they have all had a bug, as there was a lot more vomit than usual all round. Fingers crossed I don’t catch it as I was in charge of dialysis and giving Jasmine her epo injection (boo hiss) this evening.

As Jasmine’s dialysis regime has changed, the Baxter man arrived with 21 boxes of dialysis fluid. Our living room is now one big dialysis store room and we are out of ideas about what to do with them. So, they are just piled up against one wall. After the lovely Baxter man left, all four of us went for a lie-down. Unfortunately, I was near the phone which kept bloody ringing with annoying people offering me debt collection schemes and wanting to do surveys on me.

This week has been the busiest, but all the appointments went quite smoothly and we were really lucky that we didn’t have to wait too long for any of them. On Tuesday my six-week check-up went well and afterwards I came straight home to pick up my girl Jasmine and give her a big cuddle. I have really missed picking her up whenever we need a cuddle and having to ask Neil to put her on my knee and take her off again has been a bit of a drag all round. She has gotten so big and is quite heavy, but it is lovely to pick her up whenever. I know that I am getting stronger as I can almost do all the exercises the chiropractor has set me. This evening I got my little carpet cleaner out to wash the carpet, although it is a bit of a lost cause now with all the vomit stains everywhere, but since Jasmine rolls about a lot on the carpet, it is nice to know that it is clean for her even if it looks a state. I must be recovering if I have the energy to scrub the carpet.

On Wednesday, Jasmine’s parathyroid scan seemed to be ok. We won’t find out the results until the next clinic but the sonographer said that if you can’t see the parathyroid on the scan, which she couldn’t, then all is well. We walked down to GOSH as we had to travel in rush hour and two buggies on the tube can be a bit of a challenge. After lunch, Calista got a clean bill of health at her six week check-up. And late afternoon we even managed to fit in some Abbot food pump training. The lady came to our house which was nice. After she went Neil and I lay on the sofa stuffing our faces with chocolate biscuits to build up the strength to do the machine and the dressing and all the evening chores, as we were really tired by then.

On Thursday morning, Neil went round to the doctors to get various ailments treated. I think he is run down after his heroic non-stop dialysis duty and generally looking after everyone. The poor man needs a Bob Martins, as my mother would say. After the doctors he went to the chemist to pick up all of our supplies and struggled home under the weight of the massive maxijul tubs that Jasmine uses. And then he went down to the concierge to drag back our new food pump and all of its accessories. The concierge came with him as there were a lot of boxes.

Calista and Neil

We also have some new style reusable medicina syringes for Jasmine’s medicines. You can use them seven times – it says seven days on the box, but we are interpreting this as seven times, as I am sure they won’t spontaneously combust at the end of the week. You have to wash them before you can use them even though they arrive in a sealed packet. How to do this and whether you should sterilise them before use is just not clear, but they do have jolly pictures on the side of the box. So, if you draw up your medicines one at a time just before you give them, then life is going to be one big cycle of washing your syringes and sterilising them before use, or worrying about whether you should have sterilised them if you are just washing them. Mmm! Not great when you have a load of other stuff to do. After a bit of a dither this morning, I washed a big handful, sterilised them and then drew up some Ranitidine. My top tip is to separate them out, and put them in a colander and fill the sink up with Fairy Liquid and let them soak for a while and then rinse them out – no hassle since they are in the colander – and then put them in the steriliser. Ours is one of those microwave steam ones which are really good.

This morning, Jasmine put her arms out for Calista. I put Calista into Jasmine’s arms and Jasmine hugged and kissed her, and then job done, Jasmine got a bit distracted and poked Calista in the eye.
Jasmine is also totally distracted by Calista’s new fabulous booties (thanks Nicola) and funky feetfinders (thank you Barbara) and pulls them off poor Calista’s feet.

I think that the new dialysis regime is doing something as Jasmine has been waking up at 6am instead of 5am. That extra hour is just magic, as are my girls! (And Neil of course!)

Calista's new booties

Neil: Line change

Monday, July 20th, 2009

Jasmine had her line changed today at GOSH. The titanium connector has worked very well and lasted seven months without any problems. The line has to be soaked in Bettadine for three minutes before the catheter can be changed, to minimise the chance of infection. The risk is low, so we don’t have any prophylactic antibiotics this time. I held Jasmine during the line change and our lovely nurse clinician very kindly made Ruth a cup of tea (who was a bit teary after a big transplant talk) and was very encouraging about the way we care for Jasmine, which was just what we needed to keep us going in this busy week.

Jasmine’s dialysis volumes have been increased again, to a fill volume of 500 mls, so she needs three dialysis fluid bags a night, rather than two. This means that our next delivery will be bigger, but since we are using the dialysis boxes as furniture in the living room that isn’t a problem.

We walked all the way to UCH for an ultrasound scan for Calista, as Ruth’s hip is much better now. They couldn’t see any problems with Calista’s kidneys, so that is a relief. It is now six weeks since Ruth’s c-section, so she can start doing some exercise.

At GOSH we also met the transplant co-ordinator, who went into more detail about what we have to do pre and post-transplant. Jasmine needs a magnetic resonance venography (MRV) to check that all her veins are free from blood clots. She also needs another electrocardiogram (ECG) to check that her heart isn’t under strain. Post-transplant her blood pressure will be maintained at a higher level to match my blood pressure, and she will need at least two litres of fluids per day to keep it hydrated. This will put extra strain on her heart, but will limit the amount of tissue that is damaged in the new kidney.

We should be able to get hospital transport to and from our flat, as it is important not to go on public transport until the immunosuppressant regime is stabilised. This will make our lives a bit easier, as getting to and from hospitals with two kids can be a struggle, especially during rush hour and once Jasmine is discharged we will be going everyday for at least a month and then every other day and so on until we work down to monthly visits. Any infections could cause the kidney to start rejecting, and any changes in her bloods will mean immediately being admitted into hospital. If Jasmine or I have an infection pre-transplant, even the morning of the operation, it could delay the operation by months.

Neil: Clinic – PTH problems

Saturday, July 18th, 2009

Big sister

Jasmine had clinic down at Great Ormond Street on Monday. There were lots of changes this week. Her length (71 cm) and head are still on the 0.4th centile, but she has been putting on a bit too much weight around the middle, so the dietician cut back on the glucose supplements. She is about 9.5 kg which is 21 pounds.

They had some new products in clinic. We tried out the CATHcarry exit site dressing. You can see the exit site through a clear window, which is a bit freaky. There is also a loop on top of the dressing that is supposed to hold the catheter safely. However, it just seemed to give Jasmine something to grab hold of and she instantly started tugging off the dressing. The dressing would need trimming down for Jasmine, and we lost 1 hour 25 minutes of dwell time overnight, so we are going to stick with the cutiplast dressings that we are used to.

Jasmine’s blood results show that her Parathyroid Hormone is high (higher than her normal chronically high level), so her calcium-based phosphate binder has been increased, and her one-alpha vitamin D supplement has been decreased. The doctors are always closely monitoring these levels. This is a common problem with peritoneal dialysis, and is difficult to manage, especially in babies. Jasmine has to go for a neck ultrasound to see how these imbalances are affecting her parathyroid. These problems should all clear up after transplant.

Jasmine’s dialysis program has also been changed as her surface area has increased. She is still on 12 hours a night, with 9 dwells, but her fill volume has been increased to 450 mls, and her last bag fill is up to 250 mls. Increasing the volume causes Jasmine some extra discomfort, and she took a few days to get used to the change. She has been waking up at 5am vomiting and screaming every morning now, for several months, whatever the program, so we take turns to get up and see to her.

Jasmine is also due for a line change on her catheter, as it has been on for six months. We have to go back to GOSH to have the catheter changed. We will probably have to do prophylactic antibiotics for two days, to prevent against infection.


Calista is doing well, sometimes sleeping through the night to 5 am. She is putting on weight, and is up to 5 kg (11 pounds). She is starting to stay awake a bit through the day and is looking about at lights and peoples faces and smiling. She has had various rashes, nappy rash, prickly heat spots on her head, and rashes around her neck where she dribbles, but otherwise is doing well. We are taking down to UCH this week for an ultrasound on her kidneys. Her blood results came back fine last week, after our last check up there, so that was a big relief. We also registered her at the nearby town hall after our visit.

Ruth’s hip is much better and she only has to go to the chiropractor every two weeks now. She has her six week check up next week, and will hopefully get signed off, so she can start doing some exercises, and strengthen her back.

So, we will be a little busy this week as we have to go to UCH for Calista’s ultrasound, then GOSH for Jasmine’s ultrasound, then the GP for Ruth’s six week checkup and I have to go to the chiropodist, then back to GOSH for Jasmine’s line change and a chat with the transplant co-ordinator, and then off to the baby clinic for Calista’s six week check-up. We also get our monthly Baxter delivery of dialysis fluid and the other medical supplies, and we will get a new food pump from Abbot, which our PCT has decided should replace the Fresenius one.

Thank you everyone for all the lovely presents for both girls. We very much appreciate them.