Archive for March, 2008

Continuous dialysis cycling

Monday, March 31st, 2008

Jasmine's new t-shirt

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.

Neil: High white count again

Sunday, March 30th, 2008

Jasmine today

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.

Not quite herself

Saturday, March 29th, 2008

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.

Neil: Lipids

Friday, March 28th, 2008

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.

Neil: Peritoneal dialysis boot camp

Thursday, March 27th, 2008

Gorgeous Jasmine
We did more training today. I set the dialysis machine up from scratch, and am getting more confident with it. I connected, and disconnected the teddy bear. We also did some training on different types of infections and peritonitis, and how to recognise potential problems. It is essential that we take her temperature and blood pressure twice a day, and check her dialysis waste bag for cloudiness.Ruth did her first dressing change on the catheter exit site. Jasmine was very quiet as she had just finished a feed. She hardly cried at all as Ruth pulled off the old dressing, cleaned the exit site, and applied a new dressing. (Ruth: I cried more than Jasmine) We have to change the dressing every other day, and check for signs of infection.

Jasmine pulled her NG tube out again today. She is getting really fast. We turned round for two seconds and she had grabbed hold of it and pulled it out. We gave her all her feeds and meds orally through the day, but she will have the tube put back in overnight.

Jasmine was 3.005 kg this evening, but she had just had a feed, and was retaining some water, as her dialysis schedule was shorter overnight. The target is to put on 150g or 200g a week. Currently she is putting on 50g a week, so we have to increase that. The idea is that if she is on a continuous pump feed she won’t wake up in the night, and won’t waste energy crying or sucking on her bottle.

A five day old boy arrived on the ward today. Jasmine is no longer the youngest child.

Another busy day

Wednesday, March 26th, 2008

Stripey Jasmine

We arrived today at 12 noon but the nurse had already fed her for her 12 noon feed, so I felt a bit disappointed that we had missed out. Then we met a mum whose son is now 14 years-old but was born with kidney failure like Jasmine and had gone through dialysis and got a kidney at two years-old. She was lovely and encouraging, saying that we would get used to it and organise the medicines and dialysis around our lives.

After that the counsellor popped in but we were on our way to lunch, with Jasmine in the tri-cotti sling. We decided that lunch was our priority but we will see him at some point. For the time being though we are doing our best to eat and sleep well and that takes us a long way. Neil also made me walk up and down the tube and hospital stairs today as the first step (or 175 steps) back to fitness, after my operation.

We were just eating our lunch when Grandma and Grandpa Firth arrived. They had baked us a lovely Victoria Sponge Cake with fresh cream (my absolute favourite). Neil has just eaten a rather large slice whilst I am typing this and says he feels a bit sick. Greedy man, my slice was just the right size. Anyway, after that we went back to the room and fed Jasmine. We took her blood pressure and temperature and then we had to go off for training so Jasmine got cuddles from her Grandparents.

Today in PD training we learnt how to disconnect a patient from dialysis. I set up the dialysis machine and then connected the teddy and then disconnected him. Neil will practice this tomorrow. Having been through the whole cycle I feel more confident and less afraid of what dialysis means. The main message I took home today was to do the three minutes handwashes thoroughly, confidently perform the tasks in the same order so that you become comfortable and familar with the routine, making sure that you don’t rush or panic so that you don’t inadvertently touch anything you shouldn’t.

Jasmine isn’t growing as fast as they would like so tonight she will be put on a continuous feed over night. This means that she won’t have to wake for her feeds and she will take them all through her tube. In this way she will use up less calories, not vomit any feeds up, and finish all her feeds. They have also decreased the number of cycles she needs during dialysis. I can’t remember exactly why this helps, we did have it explained to us but have forgotten. We can ask again tomorrow.

Neil’s Tuareg Sling

Tuesday, March 25th, 2008

Neil's Tuareg Sling
This morning I had to go for my six weeks check-up at Homerton hospital. They lost my notes and wrote on the letter I had brought because they thought it was scrap paper and didn’t tell anyone that I had arrived. So, after an hour of sitting with pregnant women and new mums glowing with their babies – all with working kidneys – I burst into tears. When asked if I wanted a drink of water I said that I wanted my appointment, which I got two minutes later. They were very apologetic for their incompetence but by that time I was beyond consolable and forgot to ask the questions I wanted to and just got out of there as quick as possible. So I am no wiser than before I went and wasted a whole morning. My scar is pretty small though and it is amazing to think that Jasmine came out of there.

I came back to GOSH and my lovely family and we went for lunch, but Jasmine was hungry and wouldn’t settle, so we made it quick and took her back upstairs for her feed. Later in the afternoon we took her back down to the cafe for a cup of tea when she had been fed and changed and Neil wore her in his homemade Tuareg sling, which is actually a turban that Neil used to wear when he was in Niger. She was very happy, but then who wouldn’t be snuggled up near Neil’s chest?

Andy came for a visit and brought Jasmine a baby music centre in the shape of large underpants, which we strapped to the cot and admired. Andy is thinking of getting himself one to wear during his Brazilian Jiu-Jitsu, which he will no doubt perform on me when he reads this! Thanks for the music centre, Andy.

Today, we learnt how to wash her PD catheter exit site with a non-touch technique, which we will be doing every two days. It needs to be wiped with antiseptic, then sterile water, and then dried. The catheter is wiped with antiseptic and then a clean, new dressing is applied over the area, and then a waterproof one over that. Jasmine didn’t complain much and was quite happy afterwards.

Oh yes I am totally getting into the plinkety plink CD and might have to get a copy. It is called Classic Chimes, and is well catchy. Jasmine and I were listening to it all yesterday afternoon.

A baldie baby

Monday, March 24th, 2008

Jasmine chews her hand
Jasmine is losing her hair at the front. We might have to organise some sort of comb-over for her as it is still long at the back. As it was Easter Monday, the hospital had a quiet weekend feel to it and we had a calm day cuddling Jasmine in her room.

Jasmine’s feed has been increased to 61mls every three hours, so that she can put on a little bit of weight. Her weight has crept back up past her birth weight so it is 2.845kgs and it looks like proper fat. However, with dialysis it is difficult to know whether it is just fluid. But we think she might be starting to fill out.

She had a little vomit when I gave her a syringe full of sodium bicarbonate. Normally she is ok. We laughed as some of her medicines do sound like cooking ingredients. We keep waiting for the syringe of 1ml of hundreds and thousands.

We gave her the 7pm feed early so that she wouldn’t vomit when she was put on dialysis at 7pm. However, she had trouble finishing it and fell asleep so we had to put half of it down her NG tube. I have stopped worrying about the tube, I just want to her to fill out and grow.

Neil: Easter Sunday

Sunday, March 23rd, 2008

NG Tube back in

It was quiet on the ward today. Jasmine had her feed increased from 52 to 58 mls every three hours. She hasn’t put much weight on so far, and needs to build up. She was feeding well all day, but was sick at 7pm. She had just been filled up with 170 ml on the dialysis and the extra 50 mls in her stomach seemed like too much volume.

We took Jasmine’s blood pressure twice today, under the nurse’s supervision. The first time Jasmine got upset and we couldn’t hear her pulse on the doppler over the sound of her screaming. We had to redo it later. We also took her temperature.

The nurse was telling us some more about the dialysis training today. When Jasmine is ready, in a few months, we will go to ‘D’ side of the ward, and stay for a few days. We will be responsible for Jasmine’s food, medicine, dialysis, fixing alarms during the night, etc, but will be able to get a nurse to help us if we need to.

NG tube back – whatever works

Saturday, March 22nd, 2008

So we arrived today to see that Jasmine’s feeding tube was back in her nose. I was a bit sad but then it is really whatever works. She is still beneath her birth weight because she has been retaining fluid after her dialysis and when she has a fill, that is when they leave fluid in during the day, she absorbs that too. So they have stopped the fill and she has now dipped below her birth weight again. She is starting to fill out around the face though, so hopefully she will continue to put on weight.

Her nephrostomy was leaking again today and an urologist came up to check on it. He said it was ok for now and the nurses are keeping an eye on it. We took Jasmine for another coffee downstairs today and that was lovely. She likes the sling and snoozes quite happily in it. I like the sling too!

Tonight she just wouldn’t go to sleep. We changed her nappy, nursed her and kissed her. But she wouldn’t close her eyes and kept screaming. Apparently, she wakes up for her three hourly feeds during the night and screams for them too. So we were wondering whether she knows now that between 7pm and 8pm we get ready to leave her and go home. Eventually, we got her to go to sleep by playing her some mad soothing music CD collection a nurse had left in there the other day. Jasmine calmed down and fell asleep to a plinky-plinkety tune. As I said: whatever works.