Today: T+11

  

International Nurses Day today, and we as a family appreciate the nurses of the world.

We appreciate them spending 2 hours to change the dressing on Seth’s hands because it is too painful to rush.

We appreciate them taking the time to explain what they are doing and why.

We appreciate them taking the time to make sure we, the parents, are ok. (even though that is not their job).

We appreciate them dealing with traumatic events and then coming to our child and putting on a brave face.

We appreciate that if they are worried, or panicking, we don’t know about it.

We appreciate them making Seth laugh playing with him and building his trust so he is happy for them to do their work. Making this all that bit less stressful for him.

We appreciate them working constantly hard for their 12 hour shift to make sure Seth gets the drugs he needs. Seth is currently require 12 intravenous medicines per day. One of these is 24 hours a day, another 20 hours a day and quite a few are more than once a day. The shortest is half an hour but the rest are all an hour – and that is without a flush. All this with only 2 lines and a child that often needs little extras such at blood, platelets, magnesium, potassium and the like.

We appreciate them answering our seemingly never-ending questions;  going away and getting us an answer they’re unsure of, and not telling us what we want to hear because that would give us false hope.

We appreciate them taking a later break because Seth’s in pain

We appreciate them taking the time to learn about a child with complex health needs and adapt their practices to keep them safe.

So thanks to all the nurses in the world. You’re doing alright!

Today we returned to our bubble – as a BMT parent it is the place you feel most safe. But mainly it is nice that we were able to come back as planned. The trial Seth was on is a 4 day trial so was always planned to end today, however, if Seth had needed intensive care he would have stayed there. It’s always nice not to need it.

The numbers in his blood (liver, kidneys, inflammation etc) are all good. They are not perfect and won’t be for a long time, but for Seth on day 11, they’re not getting worse and that is a good thing.

The hair is gone now. It starts falling out slowly and then just falls out in clumps. When it began falling out more it was long and patchy so we asked the play specialist to come and shave it off…..Seth though she had taken all his hair and made him bald! Haha – until I reminded him that the medicine would do that and i got a sigh and “o yeah”. Today we showed him what his head now looks like and he says he quite likes it! Hopefully he will also be happy when it comes back!

His skin is starting to setting, it is quite flaky at the moment and his ankles, toes, heels, armpits and neck are still sore to touch but slowly getting a little less angry each day.

His hands are still so sore and the patches where the skin had become raw have now joined up. However, we had someone from Burns and Plastics come and see him yesterday and they have recommended a non stick dressing which has some silver in it that will help prevent infection. Unfortunately there is nothing more that we can do until the graft starts taking and he starts growing back the skin. In order to help him with the pain when we took the bandages off yesterday he was given some Ketamine and Midazalam. The really helped and he was not screaming in pain like he has been the last few times. But he had to have a bit extra Ketamine, which made me a bit sad because he must have been in complete agony the previous times for him to need so much medication to help him cope. Hopefully it will start healing soon. At the moment all we can do is try to keep it clean and infection free whilst managing his pain. Luckily when it is bandaged the pain is manageable with Fentanyl which runs 24 hourly.

Over the weekend we have been having Lymphocytes showing in his white cell count. This has been analysed and shows that Seth has 1500 T cells (Gamma Delta) in his blood. These could be the cells they gave from Nik as they only gave Gamma Delta cells. Also the Neutrophils have been coming in, but then going down again (0.03 then 0.01 then 0.3 today). Were waiting now with baited breath. Lymphocytes coming in before Neutrophils could be a sign that the previous graft has come back – therefore evidencing rejection of the new cells. Or they could be Nik’s cells floating around in the blood attempting to fix the things that are inflamed in Seth’s body. We just have to wait and see what happens and keep taking it day by day