Archive for September, 2009

End of therapy

Tuesday, September 22nd, 2009

Waiting for the end of therapy

Jasmine, Calista, and I have had coughs and colds, which in itself wouldn’t be too bad. However, Jasmine on dialysis is more vomity than usual and wakes up at 4am all congested which leads to vomiting and so we are starting the day very early at the moment. She is attached to the machine for 12 hours now which is less than we used to have but can still seem like a long time.

So, we have a portable DVD player which we put in her cot to distract her from the waiting and the vomiting. Calista enjoys watching it too whilst we wait for the magical message ‘End of therapy’ which starts our day (along with disconnecting, observations, washing the vomit out of her hair, etc). Kung Fu Panda is our favourite even if we do watch it twice every morning before we get up.

Today we went along and met the transplant surgeon. He seemed very nice but, he had to tell us about the not nice risks of transplant: loss of donor, patient, kidney. We have been aware of these from the word go but somehow when someone is sitting telling you in measured tones, it is frightening.

I just had to stop typing there as Jasmine was throwing up in the cot as she is back on the machine now. When you see her vomit as violently and painfully and frequently as she does, you know that she needs Neil’s kidney and we just have to press on.

Then we got onto the practicalities of the transplant process. They do a lot of clever stuff during and after the operation which was explained to us but now as I write this blog I am a bit hazy on the actual details of what I was told (I think I was in shock) and will have to read up. But just as a quick example, Jasmine will more than likely have to have a blood transfusion during the operation as they need to keep her blood pressure up. They wash the antibodies out of the blood so that her body doesn’t react to the new blood or vice versa and cause rejection and she will also be on a massive dose of immunosuppressants straight after the operation which will be reduced gradually until they get the right dose.

So to protect Jasmine which is the most important thing, we are following the surgeon’s recommendations of no visitors to the hospital whilst Jasmine is an inpatient and no public transport when Jasmine is an outpatient visiting the hospital daily.

After this meeting, we were exhausted so we got a cab home. I think I may have cried all the way, Neil was a total star, as usual, and Jasmine threw up on her little pink book in which we record all her feed, vomits and poos. So the book smells just like our carpet which I am now going to clean again.

Neil: Delivery day

Friday, September 18th, 2009

It was delivery day again today. It hardly seems any time since our last one. Time is flying by. We had the 8:00 am to 12:05 delivery slot and the guy came at 10:00 am, which was brilliant, as we had time to get everyone fed and dressed before he arrived. He got the 23 boxes of fluid and other supplies unloaded and into our flat very efficiently.

The cuff that we use to take Jasmine’s blood pressure sprang a leak this morning. It was due to be changed at GOSH for a larger size anyway, but we were hoping to hang on until next week. As it was dressing day today Ruth changed the exit site dressing, and did the swab that we were given on Monday. She took the swab out of its tube, dipped it in some sterile water, then rubbed the exit site where the catheter comes through Jasmine’s skin with the cotton bud end, and put the swab back into its tube. At the hospital they will see whether any bacteria grow on the sample. Ruth then set the machine up straight afterwards.

On the way to the tube to go to GOSH we went to the doctors to sort out some blood results for Ruth that have been taking ages to be sent back by UCH. We made appointments for all of us to have flu jabs and picked up a prescription from the chemist.

At GOSH we swapped the blood pressure cuff and dropped off the swab and were in Pret-a-Manger for lunch by 2 pm, feeling very satisfied with our days work!

Neil: Clinic, ECG and echo

Monday, September 14th, 2009

Jasmine had her dialysis clinic at Great Ormond Street today. It was five weeks since the last one, which is the longest time that we have had between clinics.

We phoned up last week to check whether Jasmine had done all her pre-transplant work-up. She still needed an electrocardiogram (ECG) and an echocardiogram (echo), and we got an appointment at 9:30 am on Monday. To avoid trying to take two buggies through the London rush hour we got up and out of our flat early to get on the tube for 8:15. We went for a lovely coffee and almond croissant until it was time for our appointment and then went to the Cardiac department. Unfortunately we had to wait a long time for the ECG and the echo machine broke down.

The ECG involved sticking ten electrodes to Jasmine’s chest, which she tried to peel off as fast as the nurse could stick them on. The results were normal, and Jasmine helped to peel the stickers off.

When they got the echo machine working again there was another battle with Jasmine to get some different electrodes stuck on. The technician couldn’t get a clear scan, so went to get a more senior sonographer. The senior sonographer turned on the TV, tuned in to CBeebies and had the scan done in five minutes. Jasmine’s heart looked normal.

During the echo Ruth had to take Calista to her hospital for the results of her scan that she had in July. Everything was normal, and she was discharged, which is great news.

After that we had the usual dialysis clinic. Jasmine is growing well. We had already done the the exit site, so the nurse had the great idea of taking a swab and doing it at home. Jasmine threw up everywhere while getting her bloods done, which was rather messy.

The consultant was very appreciative of our graph of weights and blood pressures, which was nice. Most people give us a strange look. When we told her about Jasmine joining in while we do our yoga she said that she would love to be a fly on the wall in our house!

Personal best

Thursday, September 10th, 2009

When we first got home from hospital with Jasmine, dialysis seemed to take all day.  It was overwhelming.

As time has gone on and we have gotten more confident and it has become part of our routine, dialysis takes about an hour or so a day when you add up everything you do.

We have to do it in three parts: disconnecting on a morning followed by observations, setting up the machine whenever during the day, and connecting on an evening following observations.  Then on alternate days we clean Jasmine’s exit site and change the dressing.  Once a week we give her an epotein injection with a thin needle.  If she was over three years old, she could have an epo-pen but since she isn’t, we use a needle and inject her subcutaneously.

Today, I was on duty and I had to set up the machine, clean the exit site, and inject Jasmine.  It was  10.07am when I began my first one-minute handwash and at 10.52am I had finished everything and was just picking up the packaging.  We were trained to  throw everything on the floor as we go along so that we are not tempted to touch any of the ‘dirty’ packaging with our scrubbed clean hands.  I was amazed  and will probably never do it as fast and well as that again so thought I would write it down here to remember.  The dressing looked really neat too.

Some days it is not like that at all and everything seems much bigger and scarier than normal.  I will touch the wall by accident so that a three minute handwash takes six minutes or the dressing won’t be all lined up nicely and then I fret that I might have touched Jasmine’s skin by accident or something (not that I will have because you know when you touch something you shouldn’t).  The other week the machine just didn’t look right.  The bags had a funny patch on one of them and I touched the patient line by accident, and in the end, I just threw the whole thing away and started again, as I knew I wouldn’t have slept that night for worrying about infections.  It was the first time I have had to throw away the bags and cartridge off a machine which is ready for the night in the whole time we have done dialysis.  I felt weary at the thought of a load of new hand washes and repeating the set up but it was the right thing to do.  With the experience that I have now of doing dialysis,  my one rule is do everything as best you can so that when you get into bed you can stop worrying long enough to go to sleep as you know you couldn’t have done anymore.

Neil: Jasmine helps out with the observations

Monday, September 7th, 2009

Piglet gets weighed

Jasmine has been getting much faster at shuffling across the floor. She sits upright and wiggles her way around the living room. We have to keep a much closer eye on her now.

Calista had to go for her second round of immunisations. She is now 6.14 kg (13 lbs 8 oz) and tracking the 75th centile. She is doing really well and starting to look around and smile. We think she is teething already, as her front teeth are visible through her gums and she is drooling. Ruth has been carrying Calista in the sling, which she likes, as she always goes to sleep.

The other day I was sitting on the floor feeding Jasmine and managed to bend my big-toe nail back, causing it to bleed. Ruth got out some sterile water and dressings and dressed the wound, which was great. I went back to feeding Jasmine, and Ruth promptly stood on my remaining toes!

We got Jasmine a mini buggy that she can put her dolls in. Now she shuffles over, puts piglet in the buggy and shouts what sounds like “I did it”. Then she pushes him over to the scales that we weigh Jasmine on every morning and evening (Jasmine is now 10.3 kg or 22 lbs 11 oz). She takes piglet out of the buggy and puts him on the scales (piglet weighs 0.1 kg). We thought that she was going to do his blood pressure and temperature next. It was only then that we noticed that piglet actually had a plaster on his foot. Jasmine had stuck one on to copy her dad.

Neil: Wedding anniversary

Tuesday, September 1st, 2009

Happy Anniversary

Last year we had a line break in Jasmine’s catheter and ended up doing two weeks of antibiotics over our wedding anniversary, so this year we were prepared, and began celebrating a week in advance. In the end nothing bad happened, and by the time our anniversary arrived we were worn out celebrating!

Happy Anniversary to us