It has been a few days since my last update. Apologies, but the stress of getting Seth to transplant I think took its toll and I have been pretty exhausted since the magic went in!!!
Well he is ok, he is doing better than had expected so I am struggling to stay realistic. We still have potentially very rough times ahead. Nothing has changed in terms of risks and expectations, but he is not critically ill which is what I had prepared myself for. I keep having to remind myself that it can still happen. Seth still has no working immune system. The cells are in, but they are not home and not working yet.
Also his Kidneys are an ongoing concern. At the moment the Creatine (used to monitor kidney function) in his blood is at the highest level of OK for his size. So it is a worry. Doctors have reviewed his medication to make sure they are only giving him drugs that are absolutely necessary. But inevitably they are all going to risk his kidneys to some extent. The positive thing today is that the kidneys have not got any worse and although it is not common for a BMT patient it is not unusual, so it is something we have to watch.
Since T+2 Seth has been having temperature spikes regularly and his CRP (inflammation/infection marker in the blood) is high at 450 (less than 5 is normal). We re not sure what is causing the temperatures at the moment.
In himself Seth is ok. On Saturday (T+1) he was in pain and discomfort but the morphine was helping, and he started to sleep a lot more. At the moment he is sleeping most of the day only having approximately 2 hours of awake time per day in half hour stints. He is getting tired quite easily. When he is awake, however, he is content. He has played and did some drawings today and yesterday.
His skin has an almost tanned look to it at the moment, which is a side effect of the chemo drug Treosulfan. His hands are very swollen and raw so we have a dressing on that won’t stick and bandages.
Seth is still positive fluid wise and the doctors are trying to manage it as best they can by monitoring his input and using diuretics to help him flush the fluid from his system. At the moment his genitalia are quite swollen and doctors think that this is because he is retaining fluid. But he is quite sore and uncomfortable with it.
At night he is continuing to struggle to maintain an acceptable oxygen level. So today we are spending sometime getting him used to oxygen prongs on his face, this will enable them to monitor how much oxygen he needs.
Another side effect of chemotherapy is Mucositis. Seth has bleeding on the roof of the mouth and the inside of his top lip from ulcers caused by the chemo. We are trying to manage this with god oral hygiene – brushing his teeth, cleaning his mouth with a sponge soaked in mouthwash type medicine, and a bonjella type medicine 4 times per day.
We still need to take it day by day. We do not know what is causing these temperatures, and we do not know how his kidney’s are going to cope with the ongoing medication. We also do not know how Seth’s body ill react to the stem cells, or how the new cells will react to Seth, also we do not know how Seth’s body will continue to respond to the chemotherapy. So at the moment there are a lot of unknown answers. But now everyday that passes we are one day closer to the next step – neutrophils. Hopefully we will start to see those come in at around day 10.
Seth says that Daddy’s magic is still finding its home, so he will feel better soon.