We are back home. After a very short stint at kings we were discharged on Tuesday. It was a frustrating hospital admission, since it was so obvious that Vega had the same virus as we all did and she wasn’t even neutropenic. Very regardless of all this she had to stay in hospital until all her cultures came back negative and she also had to have antibiotics as a precaution. With three children of all varying ages coughs, colds and sore throats are really unavoidable and this has been the second time that a bog standard bug has landed us in hospital.
All this was made ultimately worse when I (yes stupid mum) provided an ‘unclean’ poo sample upon our admission on Saturday night (hang on that sounds all wrong… It wasn’t my poo obviously..).
Anyone who ever had to give a mid-stream urine sample knows how hit and miss this can be given the size of the pots. Now imagine trying to hold a three year old, in the middle of the night, rather feverish and uncooperative, while attempting to catch some droppings before they hit the bottom of the toilet. Well I was not too sure about the sample but as I am always desperate to get out quickly and had no intention to prolong our stay by 12hrs or so because I waited for my sweet daughter’s next BM.. I did hand in the dubious specimen.. BIG MISTAKE! 12hrs later they came in with new medication saying Vega most likely has C Diff, a hospital acquired superbug. I have to say that Vega was the picture of health at this time, so I refused the medication, confessed to my questionable poo catching technique and asked to hand in a new sample to have it rechecked.
Now we left a day later, Vega still well, no symptoms of c diff. They did write on the discharge note that one stool sample was suspected of c diff but I didn’t think any more of it.
Today, we arrived at the Marsden for chemo and were instantly shown to the isolation room because of c diff! The second sample I handed in had not shown any signs of c diff but they can only be clear of this after 5 days. Here at the Mardsen, with all the neutropenic children in one ward together they can just not take any risks so we are isolated and not even allowed to go to the canteen. What was supposed to be a quick in-chemo-out job turned into a whole day of being locked up. Lyra was here too, bad for Lyra, good for Vega, because it wasn’t quite so boring. Alys is at home with Ray so I didn’t have to worry about her.
As if the isolation/ c diff issue wasn’t enough, there were also questions about Vega’s blood counts from the days in Kings. As I said before we arrived on Saturday night, and although she was feverish she was not neutropenic. On Sunday her neutrophils were above 4. Very good. On Monday her neutrophils were 0.4. Totally plummeted within 12 hours or so. Monday was exactly 7 days after her dose of IV methotrexate and this was the day when the effect would start to show-a drop in neutrophils and Vega also started to complain about pain in her mouth. She had slightly red patches in her mouth but no ulcers yet. Neutrophils at 0.4 would have been to little to have an escalating dose of methotrexate today, but when her blood was tested today, her neutrophils had gone up to 1.9 already again so she was cleared to receive an escalating dose today.
But all this meant a big to and fro with the pharmacy here at the Marsden, prolonging our isolation lock up by a few more hours.
But that’s it. First ten days of escalating capizzi are done. Vega was really quite sick for the first five days, then neutrophil drop and sore mouth around day seven. I expect something similar for the next ten days. Vega is still walking, and to my horror makes attempts to skip (!) and run (!). I say to my horror because she is still wobbly and trips and falls a lot. Last thing I want to do is take her to hospital for a skip related injury. Nevertheless I am delighted that her mobility issues are improving.
Her eating habits are getting more and more difficult to deal with. She barely eats anything but she has a particular aversion to anything healthy. She cries and screams when we ask her to eat a piece of apple or carrot. She has always been a good eater, didn’t dislike anything really but now I am constantly trying to convince her to eat something veggie or fruity and failing to do so, hiding things in foods I am preparing. She seems to have a sixth sense for this and finds everything I so skillfully hid. She is now weighing the same she was at diagnosis in January. She has grown, but she is thinner.
Lyra has been better since I took her to the doctor, she has not had any tummy aches since then and even with Vega’s short hospital admission, the last week has been good for us as a family. Ray had booked this week off and although he is obviously not pleased about spending his annual leave in hospital, we both said yesterday that we now work like a very well oiled machine. We have the tag team parenting down to a tee and all the children appear relatively well adjusted and happy. So there are moments of calm in all the madness, and a getting used to all the hospital stuff, pain, antibiotics, needles and chemo. We have had a decent dinner twice this week already and the dishes are under control (do not ask about the laundry…). Now depending on how sick Vega is feeling, rather than the weather, we are planning a day at the beach. Wish us luck!!