Jason has been good today. I saw our dietitian and we are starting to try and reduce the TPN feeds and increase oral feeds to keep within his nutritional requirements. Today we needed to do two elemental 028 feeds and sips of pediasure which we did manage. I find after oral feeds he does get symptoms of redness, gaggy then exhausted and sleeps.
I saw our paed and nephrologist today. We repeated the urine tests and bloods this morning. The urine protein creatinine takes a few hours so we should know tonight or tomorrow. The potassium has decreased to 2.3 now which is concerning. His blood pressure is still high. The plan is they're going to increase the enalipril to twice daily. They have stopped the nebbing as that can contribute to the low potassium.
I had a good chat with the nephrologist about Jason, his symptoms, his health and his future. He said we won't be going home until we can get his electrolyte problems under control and the blood pressure and of course oral feeds. He said long covid may be a problem with Jase. We don't know how it will affect him and he will need to be closely monitored. School wise he said definitely not for the rest of the year. Feeding wise for his future we have a lot to consider. I have discussed this with all the doctors. Lately every time Jason gets sick we have feeding and hydration problems and can't feed him or give him liquids and we end up in hospital and have to commence TPN feeds straight away which is not ideal. We have to make big changes.
Yesterday I received a lovely delivery from Nicole's school - a beautiful bunch of flowers 💐. So spoilt.
I saw Bruce and Nicole today. They are out of isolation and came to bring me some Nandos livers 🤪, snacks and drinks. Bruce phoned when they arrived and I could see them walking in the parking lot. We tested to see if they could see me but the windows are tinted. I climbed on my chair and opened the top window and stuck my head out. The three of us managed to have a conversation and see each other which was great. I haven't seen them in 12 days and that's hectic. I'm missing them so much.