Dylan got moved into a side room in the end to protect him from infection, we've managed not to need anymore chest drains so still only have the upper right hand side one in, he hasn't really had anymore coughing fits and his medication wean is going quite smoothly with only minor withdrawals at certain points of the day so lots of small steps in the right direction..
We have had a few issues with him opening his bowels, they've become a bit bloated and sluggish with all the medications but hopefully we are keeping mostly on top of it now and he is even using his potty at points with lots of help from Mummy and Daddy..
Physiotherapy is going well, he is still weak and shaky but is managing to sit up quite well now and hold his own head up, plus he has been using his arms and hands to eat at points and play which is good progress from the start of the week. We haven't really worked much on his legs yet but every day there seems to be progress being made and he gets that little bit stronger so hopefully we can start looking at walking or at least standing in the next week..
Speech wise he is pretty much back to normal.. demanding and cheeky! He gets a bit breathless at points but mostly when doing other things at the same time such as playing or eating (which he has done lots of since stopping the ng feeds)!!
The only other real 'news' is that the test results for the BRAF gene mutation came back all clear which was a massive relief to us.. yes if he had tested positive it would have opened up new treatment options to us but it also would have increased the risk of it coming back either in his lungs or elsewhere or even opening him up to other forms of cancer that are connected with that gene mutation. He has also had some CD25 blood samples sent to GOSH which will be taken again tomorrow, the purpose of these is to see how the disease is responding to chemo. I am VERY nervous about these results.. yes his X-rays before his infections were looking clearer but with how bad he got with the infections and during his week off chemo I am worried as to whether it started to come back a bit. I think to analyse the results properly they will need to send them off over the next few months so lots of waiting and anxiety to come!
Either way, whatever the results I am so in awe of Dylan and how amazing he is.. I never in a million years thought he would pull through Easter weekend let alone be doing as well as he is so far and that we would be busy planning his birthday with the hospital staff.. every minute of every hour is an absolute blessing and I am so grateful for him, he is my miracle!
No comments:
Post a Comment