Jasmine Stalker-Firth

As Yogi Berra would say. The nephrostomy started to leak again today. It will be great when Jasmine has her operation and she no longer needs it.

We had a nice day. We watched the first half of the Boro v Man U match in the canteen downstairs. Then we went back upstairs for the second half as it was time for Jasmine’s feed. Feed times are much nicer now that she is enjoying her breastmilk.

After the match, Neil changed her PD exit site dressing and I set up her dialysis machine so we felt that we deserved a tea-break. We took Jasmine back downstairs for another cup of tea until it was time for her last feed and observations.

The only worrying thing is that during the night Jasmine’s machine alarmed several times to say that she was filling slowly. This could be due to fibrins (stringy bits) in the dialysate, though her fluid this morning was clear. The nurses are keeping an eye on it.

Jasmine was totally into her feeds today because she was back on breast milk. They had taken a sample of her peritonium dialysis fluid last night and it didn’t have any lipids in it. So, for now she will continue on breast milk. This is good news, as she takes her feeds all orally and enjoys them. She was even back into sucking on her dummy, so it seems that she just hated the monogen and didn’t want it.

Aarti came for a visit bringing lots of chocolate and a lovely dress for Jasmine (thanks Aarti). We met Aarti in the canteen with Jasmine and later on when we went back to Jasmine’s room Aarti was cuddling Jasmine.

At the end of the day Jasmine was tired but refused to sleep and kept whingeing everytime we put her back in the cot.

It was the end of a tiring week. I was glad that it was Friday so I can have a bit of a lie in tomorrow! Ruth set up Jasmine’s dialysis machine again, and was much more confident with it. She also had a go connecting and disconnecting teddy again. I changed Jasmine’s PD dressing for the third time, and each time it gets a bit easier.

Jasmine has been changed back to breast milk during the day, as the monogen concoction is making her vomit. She is still on monogen through the night. They think that the chyle and the infection have both cleared and they want to get her growing. Her white count was 1 today, so that is good.

Later on Trish came to visit bearing more gifts including some really nice hand cream for after those handwashes (thanks Trish).

Today we registered Jasmine’s birth. She is official. They use fountain pens to sign everything because they use ink which never fades.

The nurses took a sample from Jasmine’s dialysis fluid last night, and her white count is back down to 2, so this latest case of peritonitis seems to be under control, which is good news.

I set up Jasmine’s dialysis machine this afternoon, which was nerve-wracking as I was actually setting up a machine that our daughter would be plugged into later. Afterwards, I felt really glad that I had done it. It is another step towards us taking care of our Jasmine.

Afterwards, the nurses and I worked out a daily routine with specific times for feeding, bathing and dressing changes so that as each shift changes over, Neil and I can stay with the same routine.

Sarah visited later with lots of lovely smellies for Jasmine and for us (thanks Sarah). Sarah’s Grandma also sent a soft blanket which she knitted (thank you Mrs Vincent). Unfortunately, Jasmine christened it by being sick almost immediately. We are washing it this evening and will try again tomorrow.

Kelly Rowland, from Destiny’s Child visited the ward this morning. She wanted to hold Jasmine but since we weren’t there, she couldn’t without our permission. One of the nurses pointed out that this was just as well. Had Kelly washed her hands? Can you ask pop stars to wash their hands and wear a plastic apron and latex gloves? Apparently, she was very nice and sat and chatted to the older kids as well as signing autographs.

Jasmine had her bloods taken.  The doctor asked me to close the curtains and turn out the lights, which was slightly worrying.  However, she just took Jasmine’s arm and scanned it with an infrared light to find her veins.

This afternoon, Jasmine had her brain scanned. This was to check that her droopy eye and lip smacking are only symptoms of dialysis – too much or too little fluid. She slept through the ultrasound and the cold gel on her head and only got upset when she filled her nappy on the way back up in the lift. She is my gorgeous strange girl.

Under supervision, I changed her PD exit site and that was good as I felt less frightened of it. Although, I did have to wash my hands for six minutes as I managed to touch the sink after the first three minutes hand wash. Jasmine was brilliant throughout the whole thing. She didn’t even flinch when I was pulling off the large waterproof dressing. Neil and I both took her blood pressure too.

She was put on dialysis early today and the nurses took a sample which was clear and sent it off for analysis. Hopefully, they have caught whatever infection it is. Jasmine will be on antibiotics for two weeks.

Jasmine wasn’t sick at all today, which was good news. She even had an extra feed, because we got a bit muddled up again with times. This could explain why she wasn’t too excited about her feeds and had to have quite a lot through her tube today.

Now, when I put her up on my shoulder to wind her she puts her arm around my neck and pants little hot breaths onto my skin. It is wonderful. I spent most of the day winding her.

I went back to work today. That was a big change after weeks of going into the hospital every day.

Ruth had a tough day at the hospital. Jasmine was sick, and wouldn’t stick to her routine. She had to have her NG tube repositioned, which is always distressing. Also, there wasn’t an opportunity to do any training. Jasmine is still on continuous dialysis with antibiotics. She will be taken off dialysis at 6am tomorrow morning. They will then take a sample of the fluid from Jasmine’s peritoneum and send it off for analysis to check that the antibiotics have worked.

I came along after work and changed Jasmine and gave her a feed. She took all the feed, despite it being a monogen, liquigen cocktail. Jasmine has rather sunken eyes today, and a sunken fontnelle, indicating dehydration.

Last night Jasmine was put on 48 hours continuous dialysis with antibiotics in the dialysate to tackle a suspected infection. Her white cell count had reached 1000 when it should normally be less than 100. It doesn’t seem to be peritonitis as she doesn’t have the other symptoms such as a high blood temperature, abdominal pains, vomiting. Although, she was vomiting the other day, but that might have been due to the increased amounts of protein in her feed. Hopefully, with the dialysis the infection will clear up.The nurses took another sample from Jasmine’s peritonium last night and got it tested to see if she had had an allergic reaction to the dialysis. Thankfully this test came back negative. So, the increased white cell count could just be a reaction to the lipids and resulting chyle. It is difficult to know for certain because chyle in the peritonium is such a rare thing.

Jasmine seemed better in herself today but was struggling with her feeds and pulling faces and sometimes spitting it out. Poor thing will be on this feed for a month yet, so hopefully she will get used to it. I had to put some of her feed through her NG tube using a gravity tube. Later, she was put on continuous feed for her 7pm feed as she was still sleepy and didn’t want any of it.

Neil cleaned the PD catheter exit site again today and said it was much easier than the first time. He touched the wall when trying to turn the tap off with his elbow and had to redo his threes minute handwash. Six minutes is a long time when you are holding down a naked wiggling baby whilst watching your husband wash his hands.

Being a popular girl, Jasmine received, through the post, a new t-shirt (Thanks Trish), dummies, socks, two outfits, and a pair of Middlesbrough FC slippers (Thanks Barbara and Lee, and for the shortbread – my favourite). So, Jasmine is all set for her next football match. She may be needing her dummies as the Boro have some tough fixtures.

They tested a sample from Jasmine’s peritoneum again this morning. Unfortunately the white cell count was over 1000. Jasmine still doesn’t have a temperature, or other signs of infection. Later in the day they took another sample, which was still cloudy, and sent that off for analysis. The doctor thinks that there is a chance that Jasmine might have some sort of allergic reaction.

Jasmine is now on slightly more concentrated feed, as she has not been on dialysis. Her urine output has increased, so she is not looking puffy. Her creatinine went up some more, to 240. She didn’t take the last 6 mls of her feed in the evening, so I had my first go at opening the NG tube, feeding her the last 6 mls, and flushing the line with water. It wasn’t too difficult, much easier than some of the other tasks.

Jasmine’s blood pressure was really high in the night and the nurses had to give her something to bring it down. She was also sick through the night even though she was on a continous feed. She was put back on continous feed mode this morning after she had been sick during a ‘normal’ feed at 9am. She didn’t throw up at all for the rest of the day and slept for most of it.

After about 5pm she seemed more like herself and woke up when we changed her nappy. Then Neil did the catheter exit site dressing for the first time. He said afterwards that he found it very stressful. Jasmine was quiet through most of it and only wriggled a bit. Jo, the nurse looking after us today, changed Jasmine’s nephrostomy dressing as Jasmine had managed to get poo on it.

They are keeping Jasmine off dialysis again tonight as she is managing ok without it and they want to see how much kidney functionality there is. Her creatinine level has started climbing (from 161 to 214) but her kidney is producing more urine. They have reduced the amount of protein in her feed to try to stop her urea levels rising.

When Jasmine was taken off the dialysis machine this morning she had a cloudy drainage bag. This can indicate peritonitis, which is an infection of the peritonium. The nurse took a sample and sent it off for analysis. Jasmine didn’t have a temperature though, which can be a sign of peritonitis too. The initial tests showed a white count of 15, too low for peritonitis. Later on in the afternoon some more results came back, indicating that the cloudiness was caused by lipids. Apparently these are leaking from her lymphatic system. The lipids have been identified as chyle. The doctors think that maybe the peritoneal dialysis (PD) catheter has poked or scraped something and caused this breakage. It is an extremely rare complication of PD, but the few reported cases have cleared up without further difficulties.

The long-chain fats in breast milk and SMA are seeping through the lymphatic system and into her peritonium, making her fluid cloudy. To give this breakage a chance to heal, Jasmine is being put on medium-chain fats in the form of Monogen. (Ruth: Monogen smells and tastes like potato starch, I would throw it up too.) She will also be on Liquigen and Vitapro. Given a few weeks, the damage should heal and Jasmine can return to drinking breast milk.

Jasmine was much more sick than usual, for reasons that are not clear. It may be related to the excess chyle in her peritonium. The nurses on the night shift will drain her peritonium tonight. She threw up three times during her 3pm feed and was quite distressed. She threw up her NG tube too and so the nurse had to put a new one into give her half of her 6pm feed, which she didn’t want and threw it up. Her blood pressure was also all over the place between 60 and 140.

Just to keep us busy the doctor said that he is taking Jasmine off dialysis. Apparently her creatinine levels have decreased faster than is possible with dialysis alone. Therefore, he suspects that the function of the right kidney has improved somewhat. This sounds like fantastic news, but we have to not get our hopes up. Her creatinine levels are still 10 times higher than they should be. Jasmine is not going on dialysis tonight, so the nurse locked off the line with heparin (an anti-coagulant) to stop it clogging up. They are going to monitor her bloods and see how she does. Hopefully her head won’t swell up to the size of a wagon wheel this time.