Archive for February, 2008

A day of scans

Friday, February 29th, 2008

bunny

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 goes onto dialysis

Thursday, February 28th, 2008

dialysis machine

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.

Vomiting all day

Wednesday, February 27th, 2008

Cutie Jasmine

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.

Neil: Peritoneal dialysis catheter insertion operation

Tuesday, February 26th, 2008

Today Jasmine had her procedure to insert her Peritoneal Dialysis (PD) catheter. She wasn’t allowed any milk, so she was put on a drip to keep her hydrated. She went down to the operating theatres on the third floor at 1.30pm. The anesthetist removed the remaining milk from her stomach using the line into her stomach through her nose. She was put under a general anesthetic using a tiny mask over her mouth. She wriggled a bit, but once she was under I had to leave the room. The operation took about an hour. Once Jasmine had regained consciousness she was moved back to the nephrology ward.

Jasmine was a bit irritable once she was back on the ward, so they gave her some morphine. The nurses were checking her stats every 15 minutes to keep a close eye on her. The catheter is used to insert fluid into the lining of the abdomen. This fluid is then left in the abdomen and removes impurities from the blood by osmosis. The fluid in the abdomen has to be exchanged a number of times to clean the blood sufficiently. They are going to leave the catheter as long as possible before using it, to give the area time to heal. In adult dialysis the catheter would be left for a month so the skin heals and holds the catheter in place, and reduces the infection risk. Jasmine will probably not have this luxury, as the doctors may have to start dialysis at any time. Her electrolytes are fairly stable at the moment, so they will build up the amount of fluid used slowly. In adults the fluid exchange is done by machine, but in new born babies it all has to be done manually, and the amount of fluid exchanged varies.

Neil: Bottle feeding

Monday, February 25th, 2008

Neil feeding Jasmine

Jasmine was bottle feeding today, but it is a bit of shock for her. She managed 10 mls from Ruth and later on I fed her 30 mls, which she promptly sicked up again. The nurses are trying to train Jasmine up to feel hungry, as she has been feeding continuously through the tube in her nose so far. She is back to 2.9 kilos, so her fluid is back down and she looks much less puffy.

While we were cuddling her we managed to knock off one of her nephrostomy bags. Luckily it was the left one, which doesn’t work, so Ruth just got a little “kidney sweat” on her jeans. The surgeon came in and decided that the left kidney has been given enough time and is completely non-functioning, so he removed the catheter by snipping the stitches and unwinding the pig tail catheter. The skin under the dressing was sore, so it was good to clean that and put on a fresh dressing. We had been hoping for a miraculous recovery from that kidney, so it is a shame to give up on it.

Today one of the doctors explained the procedure to insert the catheter ready to start peritoneal dialysis. This is difficult to do in babies as small as Jasmine, and there are lots of potential complications. Jasmine has been through a lot already, but she is a strong little baby. She will probably be going in for surgery tomorrow afternoon.

She had her cannula moved from her foot to her hand. She had so many bandages around her hand that we couldn’t get her gown on or off.

Jasmine’s fluid has reduced

Sunday, February 24th, 2008

Jasmine and her dummy
The nurse looking after Jasmine today said that she had to fight off another nurse to get to spend the day with Jasmine. It is really nice to think that Jasmine is a popular girl.

It was a lovely day. We got to hold her lots and have got the hang of getting her in and out of cot without setting off the alarms. The line in her femoral artery was taken out and she has a canula in her left foot now. Because her fluids are down she has had better blood results: she is losing less electrolytes and sodium and her creatine hasn’t gone up anymore. Her blood pressure has also come down.

Since she was born she has been fed my breast milk through her nose on a continuous feed,  so today’s main goal was to get her used to feeding through her mouth.  She didn’t like it much this morning when they tried a bottle and vomited. However, this evening we gave her a dummy dipped in glucose water and put it in her mouth.  At first she didn’t like the idea of having something in her mouth but soon got the hang of it and was trying to eat it.  With any luck she can gradually get weaned off the tube and begin to feed orally.  In this way she will learn to recognise when she is hungry and establish regular feeding patterns.

Jasmine is stable

Saturday, February 23rd, 2008

So we arrived at the hospital expecting another day of terrible things. However, we had a lovely day. Jasmine was having an ultrasound but when she got back the doctors told us that she was stable and as long as she continues to be so, they will hold off with dialysis for a day or two. It is better if her fluids reduce, as it will make the operation to install the dialysis catheter (in her stomach) much easier. They will do the operation early in the week unless she enters into a life or death state in which case they will do it earlier.

She had a heart murmur yesterday but this is all due to the excess fluid she is carrying.  She does remind us of a beautiful cabbage patch kid as she is still looking puffy but managed to open both her eyes. She is regularly pulling the oxygen out of her nose and yesterday during her ultrasound pulled the feeding tube out of her nose too. She didn’t like the ultrasound and made her feelings known. She also turns her head if it is put in a position she doesn’t like.

We met another parent in the parent’s room who was in with his 20 month-old daughter Blossom, who had an infection. They had gone through the same early days and then they had managed with dialysis for twenty months until Blossom was big enough for a transplant. She has her dad’s spare kidney and looks like a happy normal baby. He was really kind to take time out of his own worries to help us.

We googled about the internet too to look at how babies manage on dialysis and found www.savebabygavin.com. This family managed to look after their boy and raise the money for a transplant operation. He has his mum’s spare kidney.

We mentioned to the doctor that we had been reading things on the internet and he said that we shouldn’t as you only find the worse case scenarios. This made us laugh a lot. What could be worse than total kidney failure? Funnily enough though, there are some hideous stories out there much worse than total kidney failure – so be warned if you go looking.

It is official that I am from good working class stock and have definitely missed my vocation as a wet nurse. The nurses on the ward have organised me a nice breast pump so I can sit and pump away and I am thinking of selling my spare milk on e-bay to weird men who have strange fetishes to make a few bob. Jasmine likes my milk too as she was chewing her fingers yesterday, as for several hours she was nil by mouth in anticipation of her catheter operation. They are still fortifying my milk as she is on restricted fluids but sometimes it can be a bit too rich for her and the other day she vomited green stuff.

We got to hold her for quite a while yesterday and she stopped crying immediately which was very nice. She is good at filling her nappy especially when the nurse takes it off to weigh her (she had lost 20gs of fluid) and we are so impressed with her and look at her all the time with awe and love.

My caesarian scar has healed up nicely and I am back in my jeans and had a bath last night for the first time. The midwife asked me the other day if a black bruise was off my trousers (she thinks I don’t get washed).  I now have a big lump on my stomach which is normal and could take up to a year to disappear.  This was not mentioned in my UCH ‘Guide to Caesarian Sections’ pamplet.  Not that it would have made any difference if I had known, it just looks so weird.  Good job I burn by moonlight and never wear a bikini in case I blind people on the beach.  Although I do have a shelf to rest my beer on.

Dialysis

Friday, February 22nd, 2008

The website was down on Thursday and Friday, as Zen Internet’s servers crashed and needed replacing.

Jasmine looked even puffier today. The fluid seemed even worse. She had high blood pressure and the diuretics weren’t doing anything at all. Her creatine levels haven’t come down, her potassium levels are rising, and even though the left kidney has started remarkably to produce a tiny amount of urine, her kidneys haven’t recovered any functionality. She is losing salts and she is entering into a critical state.

They want to begin dialysis as soon as they can. We were warned that only two thirds of children make it through dialysis until they have grown enough enough to have a transplant. Along the way they may be seriously ill because of the dialysis and they may need to be fed by tube because they cannot absorb the necessary amount of calories needed to grow. There are no guarantees.

The doctor said that some families stop at this point because dialysis everyday is a major commitment and no one can predict a child’s quality of life.

Puffy Jasmine

Thursday, February 21st, 2008

puffy Jasmine

Jasmine is retaining too much fluid so she looked really puffy today and had trouble opening her eyes. We both got to hold her for an hour each and she slept peacefully in our arms. There was no change in her situation, just waiting for the diuretics to work and to see if the kidneys can produce urine which is of any use.

Six months in hospital

Wednesday, February 20th, 2008

Jasmine could be in hospital for up to six months, but everything is still up in the air. We were warned today though that we should prepare ourselves for a couple of rough days.

At some point she will need dialysis but it would be better if this could be put off for as long as possible.

Currently Jasmine is retaining too much fluid so they are changing the diuretics to see if they can get the fluid out of her body and from her lungs to help her breathing improve and to give her kidneys a chance. This is the big challenge for now – reducing her fluids. They had to increase her oxygen today as she was struggling with her breathing, even though she still pulls the tubes from her nostrils.

We both held her for a long time today so that was lovely. Neil washed her in the morning, and I changed her nappy twice in the afternoon. She was snoozy again today in between wriggling and stretching and she is very beautiful.