It has been all go this week. Monday, we went to GOSH for our appointment which was cancelled last week due to the fire. Jasmine screamed through her bloods, but we all think that it is a good sign that she objects to having unnatural things done to her rather than sitting there looking resigned. They changed her dialysis program too, reducing it by half an hour to 13 hours every night. Saving half an hour everyday really does make a difference. We never thought it would, but on those days when we are running late through all the dialysis procedures and it seems never ending and we haven’t got her connected at her usual time, knowing that it will finish half an hour earlier in the morning really helps.
Now that Jasmine is bigger, 13 hours is a long time for her to be connected to a machine and to lie in her cot. We fish her out to feed her and put her on our bed, but we have to be careful, because of the lines, particularly since that time her patient line broke and we had to go into hospital for the weekend.
She doesn’t need 13 hours sleep anymore, so will often wake up at midnight for a sing-song, which can last some time before she goes back to sleep before waking up at 5am. By which time, she has been on dialysis for 10 hours and starts to vomit, so we have to wipe her down and give her glucose water to drink. Then, she is ready for the day and will sing and burble and be cute for about three hours, or on a bad day, will vomit and vomit and scream. Consequently, we don’t get a lot of sleep. This week we have been taking it in turns to get up at 5am and go off into the living room and sleep on the camp bed. Three hours of uninterrupted sleep: Priceless.
After our Monday appointment we went for lunch in TiffinBites in the City and Jasmine threw up all over the floor. The staff were lovely about it and got the mop out. I love it in there. They are so nice. TiffinBites is where we took Jasmine when we went outside of the hospital for the first time during the day, so it is somewhere I associate with great joy. One lovely waitress thinks Jasmine is so cute, she has offered to babysit a couple of times.
Later, we went past the Bank of England and watched the millions of journalists swarming about outside, reporting the end of the financial world as we know it.
Tuesday, Jasmine had her third Hep B injection at the doctors. She screamed and then got over it which the doctor found remarkable. Tuesday evening, I discovered that after leaving Neil in charge for a couple of days we had run out of medicines and maxijul. I beat him round the head and he had to go down to GOSH on Wednesday to get some supplies until our prescriptions came through at the doctors.
Thursday, we took a family trip to the doctors and all got flu jabs. Neil had a serious man-flu jab that was very painful. Mine didn’t hurt at all, probably due to the extra padding I acquired from stuffing my face, constantly, the three months Jasmine was in hospital, and Jasmine cried at being restrained whilst the doctor jabbed her in the leg. No doubt she was upset to learn that she has to go back next month and have a booster. Getting a flu jab when you are so small means you have to have it twice.
In the afternoon Jasmine and I were sitting on the settee having a little cuddle, when she took my index finger and put it her mouth. She has her first tooth! A whole tooth is poking through on the left-side at the front of her bottom gum. It looked tender so I rubbed some bonjela on it, but Jasmine was totally unimpressed and kept gagging in a dramatic fashion. The other thing that she has been doing a lot of this week is sitting up by herself. She sits there for a while unaided and then looks surprised, wobbles and falls over.
Friday was delivery day, when I normally have a complete melt-down and get really upset, but it passed by quickly and without any drama. The Fresenius giving sets turned up at 7.55am and then the Baxter dialysis man turned up at 10.20am with all of our dialysate boxes and swabs and alco-wipes and everything. I hadn’t even noticed it was delivery day and it was all over by 11am.
In the afternoon we gave Jasmine her third injection of the week: her epotein (to prevent anaemia). This was increased this week, as she had been looking slightly anaemic. She wriggled and cried but got over that quite quickly too, but her thighs look like pin cushions. Then we changed her PD dressing on her stomach and set up her machine and did the obs and all of that. So Friday was a busy day, but it went well.
Today, Jasmine is 8 months old. She turned her nose up at her porridge this morning, and didn’t fancy anything else, probably because of the new tooth and the drooling, but she is enjoying her milk. She has had the NG tube out now for 10 days and we will encourage her to drink out of her doidy cup for as long as she can. We are enjoying the break from the food pump, giving sets, syringes, etc., but will push that plastic thing back down her nose and into her belly anytime she needs it.
This morning, Jasmine was drinking beautifully -we are trying to teach her not to guzzle – and she only had a couple of posits, no vomits at all (normally she has 10 or more big vomits a day), until I gave her sytron (her iron supplement) and she threw up everywhere and wasn’t very pleased with me.
At the moment, she is sitting on her dad’s lap playing Grand Theft Auto (Neil has just blown himself up with his own hand grenade), waiting for the footy to start. Fans have been banned from wearing the mankini. Shame, I was looking forward to seeing them in all their glory.
Hello Cutie Pie
What a lovely pic. Glad to see and read that your pretty little angel is doing well (and so, then presumably are you two, too).
Lots of love
Jen xxx
p.s. might try to haul my ass down to that there London in the not too distant future as I’ve another friend who has recently moved down that way. Fancy a lunch on me?