So another 24 hours have gone by and man have they been busy! I feel like time is flying, which may not be a bad thing as I just want to get through this now.
So today is Saturday, 6 days before transplant and day 2 of chemo. Seth had another busy night with 3 or 4 vomits and a pretty constant temperature of 39+, this continued today and his top recorded temperature at 5pm was 40.
His bloods today are reflecting his presentation. The infection marker in his blood (CRP) has increased to over 300, but although his liver function has gone up it is around 370 where as last week it was over 600 so hopefully that will stay down (absolute best would be for it to come down further)
In himself Seth is ok, when I arrived to take over from Nik this morning he was in a good mood and asked to play on the floor, however, within a few minutes he just wanted to sit and watch me play (and give me instructions on how to do it right!). I gave him his second bath of the day at lunch time and after that he was saying he was cold and was shaking quite a lot despite being dressed and wrapped in a blanket. At the time his temperature was reasonable at 37-38, but we know that he gets cold before he spikes and 30 minutes later his temperature was 39.6. He had already been given the maximum dose of paracetamol for that 24 hour period so once again he had an alternative drug, but this time it did not really perk him up or help him sleep.
The doctor this morning was concerned he could hear something on Seth’s chest, but an X-ray showed no changes from the last x-ray he had a few weeks ago. However, x-rays work behind what is actually happening so we still need to monitor it.
Seth is also complaining that his Mic-Key Button is hurting. We noticed yesterday it was looking a little yellow round the edges, and today it seems to be oozing a little so we have asked the staff to clean it regularly and a swab has been taken to see if there is an infection.
This afternoon Nik and I swapped again for a couple of hours. It sometimes feels like you are living two separate lives. On the one hand you spend your day caring for Seth and living in a medical environment, and then you’re playing with a happy developing healthy 6 month old who has no clue about what is going on around him. We try to take Hugo out and about as much as we can as it is not fair for him to spend all his time in the hospital. So this afternoon as his swimming lesson. Doing this with Hugo is bitter-sweet really. You feel bad for doing things like this when Seth is in hospital. But you can’t be with Seth all the time because his dad needs to spend time with him to. Also Hugo is now 6 months old, Seth was in intensive care at 6 months old. It is so different being with a baby who has not got health problems at this age. I only realised this recently when I was digging out 6-9 months clothes for Hugo. I couldn’t understand why we had only kept Seth’s sleep suits, then i realised, Seth did not need clothes at this age.
I digress anyway! Seth started his second day of chemo which meant that in addition to the Treosulfan he began his second chemo drug Fludarabine. Yesterday was the last day of the buffy coat (temporary neutrophils) so he is now without any protection and the Human Herpes Virus 6 has its best opportunity to thrive. He is on 2 anti viral medications in a bid to control the virus and we just have to wait and see if that is going to work.
This evening I again swapped with Nik and Seth was still the same, pretty lethargic but chatting and having high temperatures. I gave him his bed time bath and did all his cares, after her perked up all of a sudden and started chatting and wanting to sit up. He was making jokes about Ice Age being on the television and it being magic because I had not put the DVD in. Then it was my turn to come back out and take Hugo to put him to bed. Its hard leaving when he had just perked up but at least he was feeling better, and I have just spoken to him on FaceTime where he was beating Daddy up and his temperature is now down to 37 for the first time today. At least he is having a break!!!!!
So we continue to take it day by day
I would also like to take a moment to mention the nursing staff on the ward. At the moment they are short of staff, but not one of Seth medicines was late and we were never left with a machine beeping for ages before someone came to resolve it. I have noticed how well this ward works and how happy the staff are, which works as they help each other out and work together as a team. Despite them being under so much pressure working in an environment with not enough staff and incredibly vulnerable patients they are continually positive and Seth loves them all which helps him.
On 1st May (transplant day) Seth’s family and I will be once again wearing yellow for our little hero. A number of people have already said they are going to wear yellow, if you would like to join us then we would love to see, but we did not want to formally ask again as people have already given so much support to us. THANK YOU.