Following my entry on Wednesday, Chiara developed a redness around her neck which was being treated with cream but she was becoming slightly flushed around her face. She had spiked a temperature overnight through to Thursday so as per protocol she had several swabs taken for culture and was commenced on a broad spectrum antibiotic to cover any infection. She was tired and out of sorts all day Thursday and her redness had progressed into a rash over her body. At that point it was thought it could potentially be a drug allergy. Her CRP markers had increased slightly. Her Neutrafils were 1.9. I settled her down on Thursday night and headed over the road and at that point I didn't feel overly concerned.
On Friday I arrived and she was extremely flushed and the rash had no improvement at all. Her temperature had increased through the night and she certainly wasn't her normal self, she was slightly off her food and had vomited a couple of times with her medicines. Later on in the day I was told that it looked as if she was developing Graft V Host Disease. This is when the stem cells start fighting against her own body. I was hoping and praying this wouldn't happen but despite all the prophylactic steroids and medication she is given to prevent this I suppose there was always the risk that this could happen. I did read that if it happens within the first 100 days then its considered acute so I am hoping this is true. Chiara was prescribed 2 lots of steroid cream to be applied twice a day. In addition to this she was given a platelet transfusion again as her platelets were low.
On Saturday I had been telephoned at 2am in the morning as Chiara had become unwell with high temperature, increased heart rate and "out of sorts". The hospital had said they were going to put her back on her BIPAP machine. I quickly dressed and ran over to hospital anxious to see what I was going to be confronted by. When I arrived Chiara lay struggling around her cot, anxious, agitated, extremely flushed and very uncomfortable looking. I quickly placed her on her BIPAP machine and she settled down. I felt sick at the thought of her requiring her BIPAP again after getting her off it for only a few nights. It was pointed out to me that it wasn't through respiratory compromise that she was given her BIPAP mask it was more just to give her a rest as she appeared to be working harder at breathing which was probably a complication from the high temperature which in turn had given her the increased heart rate. She slept for a few hours comfortably as I sat by her bed, her temperature was struggling to decrease and I had discussed with the staff at the possibility of her being allergic to one of her antibiotics. Later on in the morning one of her antibiotics was stopped to allow them to see if her symptoms improved. She appeared to get better as the day progressed and her temperature dropped and stabilised. Her colour became less flushed and I thought she was on the road to recovery but by early evening after her bath she became red and inflamed therefore it was not a side effect from the antibiotic. Now I had to digest the news that it was most probably Graft v Host or possibly an engraftment side effect that sometimes happens in the early stages, either one had the same treatment. She recevied a blood transfusion today also and was given her GCSF again tonight as her Neutrafils were only 1.1.
The boys and Richard had arrived on Saturday but as Chiara was not 100 percent the boys didnt get in to see her. Neutrafils today are over 3 but she did receive the GCSF last night. She was reviewed and it was decided that she would be commenced on an additional dose of Steroid to try and improved the rash and the redness. Chiara already receives a prophylactic dose of Steroid in the morning she now she will receive an additional dose at night for approximately the next 48 hours. We settled down on Saturday night and I prayed the phone didnt ring with more bad news.
The news today (Sunday) is her temperature remained normal overnight last night. She ate well today, played well. The rash most of the day seemed to be improving along with the redness of her face although yet again after her bath and after I applied her cream her face became extremely flushed and inflammed. I settled her down tonight (for the first time all week since giving up her BIPAP mask)on her side cuddling into her blanket. Fingers crossed that she keeps well with no temperature. If she remains well then tomorrow we should be on a move to a different ward. This would be great as it is another step closer to getting home but I am not getting my hopes up as the complications in the last few days has been enough to dampen my spirits.
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