Jasmine Stalker-Firth

Jasmine had a hectic day today, and not too many nice things to do for her one month birthday.

She was scheduled for the Newborn Hearing Screening test. However, this was neither quick nor easy. Jasmine was asleep when they started the test. After an hour of poking things in her ears and scraping the skin off her forehead to stick on electrodes she was very cross. The test was inconclusive and they wanted to try again on another day. It all sounds far more trouble than it is worth, so we’ll give that a miss.

Later in the day Jasmine sprang a leak. The nephrostomy bag that was collecting the output from the right kidney stopped filling up. Jasmine’s urine is leaking out of her side. We were obviously worried, but no one on the ward appeared overly concerned, so we are hoping that it isn’t too serious. The doctors have been discussing what to do about the nephrostomy for a couple of weeks, but this will no doubt bring plans forward. Hopefully they will be able to do something for her tomorrow.

Today we met the nurse in charge of the home dialysis programme at GOSH. She will be training us to take Jasmine’s blood pressure, and put her on the dialysis machine. She will be telling us how to prepare the machine, and what all the error codes mean. It is encouraging that they are planning that far ahead, as Jasmine will not be able to come home for months yet. We will need space to store the dialysis fluid, and somewhere to put the dialysis machine. The nurse will be visiting our flat to advise on the preparations.

Jasmine was taking most of her milk and medicines orally, and was looking about and sleeping and wriggling. There are still no signs of any infection, so hopefully the antibiotics have done their job.

We will also be meeting with Dr Rees once a week to check up on Jasmine’s progress, and ensure that she is growing well, and getting all the regular tests and immunisations she should.

Jasmine received a teddy from her cousins Cameron and Ewan and a lamb from Aarti.  Jasmine says thank you very much.

For the past couple of days Jasmine has been smiling to herself. She has a whole range of facial expressions but her latest addition is the smile. She can turn her head from side to side and tends to arch her back when you are holding her legs up to change her nappy.

Today, we had a lovely quiet day with her made up of feeding and nappy changing and holding her whilst she smiled at us – inbetween bouts of crying when hungry and being sick once.

Jasmine is getting into watching football on the television in her room. She was a bit down that the Boro lost today to Cardiff and she yawned a lot throughout the Wigan v Arsenal game.

Jasmine was on 34 ml of milk every 2 hours today. It is very important to keep her calories and nutrition under control, so her milk is being fortified with 2 percent of SMA gold. Some feeds she took immediately, others she wasn’t bothered. She was sick a couple of times, but her temperature and blood pressure were fine. She is now on a fill of 150 ml for the overnight peritoneal dialysis. This makes her stomach swell up rather bizarrely. We are getting more confident lifting her in and out of the cot. She is still on 0.1 of oxygen, a tiny amount.

We had a lovely day looking after Jasmine today. She was drinking 34 ml of milk every two hours. She was much more settled today. She got measured and was 50 cm long. She was drinking her milk and snoozing all day, wrapped up in her blanket wearing her nappy and her Eyore socks (thanks Auntie Zoe). Unfortunately just as she was settled and we were getting ready to leave she threw up.

At the end of the day we got an update on the white blood cell count in the dialysate (solution) after draining from Jasmine’s peritoneal cavity. The nurse couldn’t get a very large sample, as Jasmine was only on a fill of 70 ml, but the result was 35.  Below 100 is a good result. She now up to a fill of 100 ml.

My copy of Pediatric Dialysis arrived through the post, 663 pages of everything you could possible want to know about pediatric dialysis.

Jasmine had her first EPO shot today. This is a hormone that is required for the production of red blood cells. It has also been used as a performance enhancement drug in the Tour de France.

Jasmine was on dialysis for most of the day. They are putting antibiotics in the dialysis fluid to counteract the infection. Jasmine’s temperature and blood pressure were fine all day, so we are hoping that it doesn’t develop into anything. We don’t have any further blood test results yet.  She is now on a Baxter Home Choice dialysis machine. Machine dialysis involves fewer line and bag changes, which reduces the chance of infection, so is a good step forward. If Jasmine does well this would probably be the type of machine that we would take home with her to treat her overnight.We fed Jasmine 29 mls of milk every three hours and she was behaving more like a baby today, crying when she was hungry or tired. As she has fewer lines in at the moment she managed to get into a baby suit.

Jasmine had a go at breast feeding today. It wasn’t as easy to get milk as from a bottle and she was waving her arms around like a crazy person (Jasmine, not Ruth)!

Jasmine’s white cell count is really high in her dialysis fluid. This is a sign of infection. She is being treated with antibiotics and has been put on dialysis for the next 24 hours. If the PD catheter is infected and remains so, they will have to remove it and Jasmine would not be able to have peritoneal dialysis until completely healed. Again this means that she would have to have hemodialysis, and all of those complications.

Grandma Stalker left on Monday and today Grandma and Grandpa Firth came along for cuddles with Jasmine. We also got to hold her for a long time today and gave her lots of feeds. She is up to 13mls an hour. She filled her nappy twice with stuff that didn’t look battery acid.

The doctors were pleased with her bowel progress today, which made us happy. She filled her nappy twice and was up to 8mls an hour of breast milk. We got to feed her, wind her, and change her nappy in between holding her for hours and hours.

The next hurdle is to see if she has a bladder. She did have one during the pregnancy – we saw her empty it once on the ultrasound. However, if the bladder is not used it will dry up. On Friday they will run dye up through her bladder using a catheter and down through the right kidney using the nephrostomy to see what is going on.

Jasmine looked much happier being fed, but was awake for several hours so we could chat to her, and tonight she was put on dialysis for the night (14 hours).

Jasmine had more x-rays during the night, whilst they tracked the barium meal. The surgeons came around this afternoon to tell us that they were much happier with the way the x-rays looked and they were holding off on surgery, but keeping a close eye on her over the next couple of days. Her condition seems to have improved, and if there was any obstruction in her bowels then they would have expected her condition to get worse.

Also, Jasmine had a low potassium count on Sunday, and low potassium causes your digestion to stop working. She was given a potassium drip and her levels are now back to normal.

Jasmine’s stomach is now completely empty. She managed to fill her nappy three times and didn’t vomit up any bile today. So this evening she was put back on dialysis and then given 1ml of breast milk through a syringe. She was so happy about this she immediately stopped crying and went to sleep, licking her chops. They will gradually increase her feed over the next couple of days.

It was sad for Jasmine to be in hospital for Mother’s day. Just a few weeks ago we thought that she would be at home with us after she was born.

Jasmine’s digestion is still not working. She is bringing up too much bile, and the barium is passing through her system too slowly. Unfortunately there are no definite signs of what is wrong. Jasmine’s white blood count has been raised, so she is being treated with antibiotics in case she has an infection. The barium has been passing through her digestive system, but it is not clear whether there is a partial blockage, or partial twist in the intestine. If things do not pick up then the doctors think that she may have to have exploratory surgery. They will open her up and have a rummage around….

The consequences of this are that the surgeons will have to cut through the wall of the abdominal cavity. This means that Jasmine would not be able to have peritoneal dialysis until completely healed (3 weeks or so). This means that she would have to have hemodialysis, requiring the insertion of more catheters. Unfortunately Jasmine doesn’t have enough blood for hemodialysis, so she would require ongoing blood transfusions. Let us hope that her digestion gets going and she can stay on peritoneal dialysis.