On Thursday we met Great Grandma Billie again, before she headed back to the USA, and all the Firths. We had lots of tea and cakes at the Wellcome Collection by Euston station.
Everyone took lots of photos and much time was spent trying to get Jasmine to look in the right direction – she was much more interested in looking at strangers and trying to pick chocolate cake off the sofa.
Yesterday, we got our dialysis delivery, all 22 boxes of dialysis fluid and lots of other stuff that we need everyday. We also got our shopping delivered as we go through 10 million nappies and babywipes nowadays and it is so nice to get them brought to our door. Once the girls are old enough, we are going to go out and plant a whole forest to make up for the massive landfill of rubbish we are currently generating.
Today, we are feeling all organised and are having a calm day. This is mainly because Jasmine slept through the whole night and woke up at 7.30am for the first time in about a year. It was fantastic. I put Calista down at midnight and got unbroken sleep until Jasmine woke. Neil made us a lovely breakfast (pain au chocolat and latte) and then we disconnected Jasmine and I fed Calista whilst Neil did Jasmine’s obs and washed and dressed her. And because we felt so rested we pressed on and I did Jasmine’s exit site and the machine and were all done by 10.30am. Amazing!
This week Neil went to see an podiatrist to get his feet fixed – poor man is dropping to bits – and I went to the chiropractor who has said that she doesn’t need to see me for three weeks as my pelvis has stayed correctly aligned, which is very good. As we didn’t have much in the way of appointments, we had time to catch up on all the exciting stuff like cleaning the windows, dusting, and hoovering round, and tidying up as our new bed no longer has room under it to store things. But because as we have traded in our king size bed for a double one we have room to wander about now – well not walk sideways all the time – so that is good.
We have had a big debate about Jasmine’s hair. Neil wanted to cut it so that it is easier to keep clean and tidy when she vomits (all the time) but I have resisted as she looks so cute with her lovely curls. So yesterday, I put her hair into pigtails which she wasn’t too keen on and kept pulling them out.
We often see other girls Jasmine’s age with hats, sunglasses, socks, shoes and hair accessories in, sitting happily in their buggies, and wonder how their parents manage it as Jasmine thinks everything needs pulling off and throwing on the floor. So we have given up putting anything on her so she will just have to look like a mad hippy (er like me then).
Jasmine has started to talk and is really funny. She babbles on in a way that sounds like conversation with the odd recognisable word. The other day, Neil took her blood pressure and said, ’90’. And then Jasmine said what sounded like, ’88’. We laughed for ages. She also likes the telephone and gets hold of it, presses a few buttons and then holds it to her ear. She can shuffle very fast now. She shuffles on her bum right across the room taking her opportunities where she can to grab things off tables or open cupboard doors before we catch her. She is great fun.
I am a bit sad today as we have decided to sell our chaise longue. We just don’t have the space for it anymore and it is much easier to sell this beautiful peace of furniture than to move house. It has been lovely to sit on and imagine all the people who must have sat on it over the years (it is supposed to be Victorian) and I am sorry to see it go. So, if you know anyone who wants to own a beautiful antique chaise longue then let us know.
We went out for lunch yesterday with Jasmine and Calista’s Great-Grandma Billie and Great-Uncle Johnny who are over visiting from the States. We had a lovely time and were sorry to say goodbye at the train station.
Today we are waiting in for the delivery of our new bed as our current one’s springs are broken because we sit on the end of it to feed Jasmine and we stand and scramble on it to get things out of the cupboards overhead and to get us in and out of it. There isn’t much standing room on our bedroom floor.
It is nice to be sitting down and not doing anything today as we have had a busy week. It started on Sunday night. Jasmine was up most of the night screaming, either because she was ill – she had an upset tummy, or because she didn’t want to be in the cot, or because the dialysis was tugging on her insides as it does when she is dry. It is hard to tell what was causing her discomfort, but she did quite a bit of vomiting. Normally, I would get her out of the cot to lie with me on the bed. But I was too tired to have her next to me as you have to be really careful not to lie on the patient line. And just lately I have had several dreams about line breaks, which was either my subconscious telling me that something wasn’t right or I can predict the future.
The following morning we were exhausted when we went to clinics (we walked down as I am feeling so much better hip-wise to avoid squeezing on the tube in rush hour). Clinics went well and Jasmine had an abdominal ultrasound. It took quite a while as she was wriggling a bit. But the technician said that her vessels look ok.
We came straight home and got Jasmine on early (5.30pm) as she was due back into hospital the next morning at 7am for her MRV. I was lying down on the bed and Neil sat entertaining Jasmine in her cot as she was outraged to be back in it and attached so soon. Then she went on her first drain and Neil kept staring at the patient line saying, “There is something not right here. There are lots of bubbles in this line. Why are there bubbles?” When she came to the end of the drain Neil picked her up to shake out the last few mls to avoid any alarms and then as he put her down he noticed that her leg was wet. It is amazing how you forget how tired you are when you notice that something isn’t right. I leapt out of bed and got a clamp out of the drawer as we stared down at the patient line and saw that there were bubbles BUBBLES coming out of the line. In my panic I forgot all protocol and clamped the line (without an alco-wipe) using the wrong end of the clamp. My main priority was to get the line shut. Neil got me to hold Jasmine as he got another clamp and an alco-wipe and clamped it further up and then wrapped the hole with an alco-wipe, then we phoned GOSH. During all of this Jasmine and Calista were both screaming their heads off.
After that Neil did a minute handwash, wrapped the catheter in an alco-wipe, opened a mini-cap and then did a three-minute handwash and disconnected her. He is very calm in a crisis. I was holding both screaming children.
Then Neil got Jasmine ready, called a cab and took her to the hospital. Jasmine was thrilled to be out of the cot and waved bye-bye. Calista and I stayed behind and collected together a bag full of clothes and toiletries for Neil and Jasmine. And organised some simple dinner we could eat on the ward.
By the time Calista and I arrived at the hospital Jasmine had a new connector-catheter on and had had a sample taken. The catheter had split just above the titanium connector so she has a rather short catheter now as the lovely nurse had to snip quite a bit off. On the whole, the catheter is great, as it is soft which is perfect for her exit site and her skin but not so good where the connector sits. We think that the weight of the titanium connector has strained the plastic so that it has split, which was where the bubbles came out. But it did well and lasted seven months. It was also better than the other connectors which seemed to split the plastic and caused us problems in the past.
Anyway! We were very lucky as Jasmine’s white cell count was 26 so she didn’t need to go on continuous cycling for 48 hours. She just had antibiotics in her dialysate bags for two days. Neil and Jasmine stayed on the ward so she could go straight back on dialysis and be taken off a bit later the following morning. Calista and I stayed until midnight and then got a cab back. And then we came back the next morning with milk for Jasmine and breakfast for Neil.
We had a nice day on the ward. It was wonderful to hand the care over to our lovely nurses, and to see everyone and to talk to other parents in similar situations. Neil took Jasmine down for her MRV, he said that she didn’t struggle this time as they put the mask on her. And when Neil went down for her after she had had time to recover from the general anaesthetic, she looked fine, as if she had just been for a nap.
Neil said that my bag-packing in an emergency is rubbish – he had two pyjama tops and no bottoms, he had footspray (I always think my feet get hot on the ward) but no nappies or dresses for Jasmine but it was full of various mad things. So we think that I should have an emergency packing list rather like my going away list which works so well.
Looking after Calista has shown us how ill Jasmine is and how time-consuming it is to look after her, especially with all the dialysis procedures we need to do each day, to say nothing of the vomiting that poor Jasmine has to go through before and after feeds and medicines. In contrast, having a new born baby is no work at all. It is the easiest thing in the world and lovely but makes me feel sad that Jasmine goes through so much each day just to stay stable. So, with this new knowledge, I am finally facing the prospect of transplant as a positive thing for Jasmine. I said as much to the nurse specialist down the hospital and she said that we must be, at this point, chronically tired with the daily grind of dialysis. I think she is right. Neil found himself in A&E at Moorfields Eye Hospital the other day and had to sit and wait for three hours. He said that it was bliss just to sit and wait and have nothing to do. It is funny that our idea of a good day out is to sit in A&E or on a hospital ward with someone looking after us.
That said, I am so grateful that we can do PD at home and that Jasmine is with us every night, so I don’t care how tired we get. It is magic. Words cannot express our gratitude for the wonderful team in the dialysis unit and on the ward at GOSH who support us so brilliantly and work so hard to keep Jasmine stable.
The day we travelled we all got up at 6am to disconnect Jasmine. I then went to pick up the largest hire car we could find, a Volvo V70 estate this time. Ruth had been packing for 48 hours and going through her checklists. She got the girls ready while I loaded the car. We left at 11:00am and arrived at 6:30pm after many feeding and vomit stops. We then had to unload everything, set up the machine, make the milk, and get everyone to bed. We flopped into bed ourselves about 1am.
Overnight we had more alarms than usual. Jasmine wasn’t at the correct height relative to the dialysis machine, so didn’t fill up properly. The machine kept alarming until it finally stopped working altogether, so we phoned the renal ward at GOSH. We tried a few things, then they suggested turning the machine off at the mains, and back on again. We thought we were talking to IT support by mistake 
That worked and Jasmine got through the rest of the night okay.
The next day an administrator from GOSH phoned up to schedule an MRI for Jasmine. We weren’t expecting the call and she was going on about MRIs, GAs, AM surgery lists and booking a bed on the ward for the overnight stay. As she wasn’t medically trained she couldn’t explain what she was talking about and freaked us out. A medical registrar phoned us back and explained that Jasmine has to be prepped on the ward as she needs a general anaesthetic for the MRI scan, so she stays still. We have the option to stay overnight, but we will get up early and go in for 7 am.
The day before we were due to come home we had recovered enough to try to enjoy ourselves, but then we had start packing all over again to get ready to leave.