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.