Jasmine Stalker-Firth

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.

Jasmine was nil by mouth today as she is still vomiting bile and having x-rays whilst the barium goes through her. She was back on dialysis. We had another scary talk from the consultant today. If Jasmine’s bowel is twisted and she needs an operation she would no longer be able to have peritoneal dialysis. She would have to have hemo dialysis which is even more difficult in a baby and she would need continuous blood transfusions.

We held Jasmine lots today.

It turns out that Jasmine is in good company. Johnny Depp’s daughter had acute kidney failure last year. The Daily Mail has an article here.

Also, there was a programme on five about Great Ormond Street Hospital.

Jasmine was still not feeling well today. She was sick in the morning and vomiting bile. In the afternoon she had an ultrasound to check that there was no backup of urine in her left kidney. That looks fine.

The doctors are concerned that there could be a kink or twist in Jasmine’s bowels due to the operation. That may be why she keeps vomiting. The radiologist also checked Jasmine’s digestion. She had an X-ray scan of her upper digestive tract. She had barium injected into her stomach through her nose tube. She has reflux, where some of the contents of her stomach returns back up her throat. To get the barium to progress through Jasmine’s digestive tract the radiologist kept turning her backwards and forwards and gently shaking her. No wonder she ended up crying! There does not appear to be any abnormal twisting of the intestine. However, the intestine does appear to still be sleepy after the operation. Jasmine will have X-rays every three hours through the night, to keep an eye on the progress of the barium through her digestive tract. There could be an infection, but it may just take time for her digestion to get back to normal.

On top of that the renal consultant is also concerned about the state of Jasmine’s bladder. Due to her kidney problems she has not been using her urinary tract. If you don’t use your bladder then it can reduce in size and shrivel up. This obviously makes any potential transplant more difficult. This will involve more scans to see what shape the bladder is in. It may be possible for the urologists to operate to remove the blockage at the exit from the kidney, or it may be something more serious.

Jasmine says thanks for the bunny Great Auntie Carol!

Jasmine began dialysis today as she had been vomiting most of the night. I was very upset. However, it is better to get her used to dialysis when she is calm and stable, rather than waiting until she enters a critical condition and then setting it up in an emergency. They have started her gently with 30 mls an hour, every hour (10 mls per kg). It takes 30 mins to run the dialysis fluid into the abdominal cavity and 30 mins to run the fluid out again.

The dietitian came round today and said that they are going to fortify her milk again with SMA. Jasmine needs more protein to help her grow and the amount of milk she can drink on a good day is insufficient. Being a vegetarian with strong views on what I eat, drink and rub on my body, I had a bit of a stress about this. However, the doctor and nurses pointed out that these are the sorts of things I feel like I have some control over in a situation where I have no control. They are right. Today I stressed about SMA. Yesterday I worried about the sterilising unit. It is much easier to worry about the small things rather than facing up to the big things. Now I have calmed down we will tell the dietitian to do whatever is best for Jasmine.

Grandma Stalker arrived today and declared that Jasmine was very beautiful. The nurses think that Jasmine looks like me but Granny Stalker said that wasn’t possible and Jasmine must look like her. Very rude! Jasmine is very beautiful and looks just like herself.

Jasmine was sick twice whilst we were there and that was the end of the bile. She was wide awake and happy and sucking madly on her dummy like Maggie, the Simpson’s baby, which seemed to indicate that she might have had a good clear out.

Poor Jasmine couldn’t keep her food down today. The reasons for this are potentially numerous:

• They put her on 44 mls per three hours to feed her up as she needs to put on weight.
• She is still recovering from the drugs from surgery.
• She didn’t eat at all yesterday prior to her surgery and was only on fluids afterwards.
• She is still trying to get used to being bottlefed.

So poor Jasmine didn’t know if she was coming or going today and kept being sick: being fed more than normal, having her stomach pumped and having her tube washed with saline solution. However, the nurses have to press on and get her fattened up. They are very good to her and we are so grateful to them, for all they do, all day and night. It was a bit hard, at first, to think that other people are feeding my baby, but I wouldn’t be helping at all if I was to try and stay there all the time. She is getting my breast milk so at the present time I am doing all I can for her.

Tonight the consultant said that the vomiting might be a sign to start dialysis. I know people think dialysis is a good thing but with it there comes a whole new set of problems (or challenges – depending on your world view). Dialysis is not a solution only a temporary fix. The longer Jasmine can manage without dialysis then the better it is for her. Anytime at all without dialysis is time well spent. There are no long term plans in place yet we are still at the day by day stage and daren’t look ahead too much. However, Jasmine will likely be in hospial for six months, then she may be stable enough for us to dialyse at home (after training!).

Her blood pressure was all over the place today and her creatine levels have gone up again to scary numbers (in the 600s). Although the fact that her right kidney still produces urine is a good sign.

Blossom’s parents gave Jasmine a teddy today which was really nice of them. Blossom is feeling slightly better now after some variable blood results and Blossom’s dad was giving Neil lots of peritoneal dialysis tips.

I wore a mask all day today as I have a bad cold and feel really ill. I went to the doctor’s this morning and he said it was just a cold – it just felt much worse because I was awake half the night with a rash down the lower half of my torso and legs – a heat/stress rash and I was boiling. I was mainly stressed that I might pass something on to Jasmine, but everyone was reassuring that it should be ok. Apparently, I am run down and my hypothyroidism could have gone hyper so I might not need to take drugs anymore. Normally, I would be thrilled about this but you know…

Thanks to everyone who has texted and emailed saying that they are reading the blog, we really appreciate all your support and we tell Jasmine everyday how gorgeous everyone thinks she is, she was even very beautiful this afternoon when she threw up on her dad’s shoulder as he winded her. She looked really impressed with herself afterwards and the happiest she had been all day. She frowns an awful lot and her dad reckons she is as moody as her mother.

Update 10pm: I phoned the hospital and they have reverted to feeding her continuously through her nose, and she has been able to keep that down.