Jasmine loves the ceiling in the hallway of the ward. It has a nice blue sky and strip lights. She likes the light. So walking in this morning I got very excited about the idea that one day we will take her outside the hospital so that she can see the sky.
This morning we met with the consultant who will look after us when Jasmine eventually comes homes and becomes an outpatient at the dialysis clinic at GOSH. From now on we will sit down with her every week to ask questions about dialysis and Jasmine’s progress. The consultant told us that when Jasmine has her operation to sort out her plumbing they will fix her hernia at the same time. We were a bit surprised that Jasmine has a hernia, as no one had told us. Hernias are very common in newborn babies, especially those ones on dialysis.
She also explained why Jasmine needs to take calcium carbonate and magnesium carbonate with some of her feeds: Jasmine needs calcium carbonate to bind with the phosphates in the milk so that the body gets rid of them and her phosphate level doesn’t climb too high. The downside of this is that whilst calcium is good for her bones, calcium in the blood can harden her arteries. Magnesium carbonate binds with the phosphates and also lowers serum phosphate levels.
We give Jasmine her medicines in little syringes in her mouth. She takes most of them quite happily apart from the magnesium carbonate, which makes her baulk. One of the nurses said that the magnesium tastes like chlorine in the swimming baths, so it is hardly surprising.
After our meeting I disconnected Jasmine from her machine for the first time. This was nerve wracking but I am glad that I did it. Tomorrow I will be connecting her to her machine. Whilst I fed Jasmine, Neil went to the treatment room to set up her machine for the first time. Once her machine was ready and she had finished her feed, Neil and I went downstairs to learn how to take a sample direct from Jasmine’s catheter. It uses a special adaptor so we practised putting that on and off and picking it up in a sterile manner.
By this time it was lunch so Neil went off to work to eat at his desk and I had a quick lunch and then went back for more training. I learnt how to set up the dialysis machine when we need to use different strength dialysate bags and how they are connected to a supply bag. Then I learnt how to take a sample from the machine.
At 3pm I wandered back upstairs to give Jasmine her feed and then, under the supervision of the nurse, changed Jasmine’s PD dressing. I managed to touch the top of the tap and also the side of the cot whilst trying to stay sterile so I had to redo my handwash.
Once I finished with the dressing I went back downstairs to learn about the dialysis machine alarms and what to do for each one. This took up to the next feed so I went back upstairs and had just started feeding Jasmine when Neil arrived. We were quite calm this evening and tiptoed off once she was settled but still awake so that we didn’t prod and poke her and make her overtired.