We had a lovely relaxed week mostly last week, lots of getting out of bed with Dylan's chest drains on his little pull along trolley (Daddy brought him his own special Mickey Mouse one) which meant plenty of exploring! Dylan had a go in the push along cars, played in the playroom and did some craft activities too..
As we had him off oxygen at points and he maintained his O2 sats so the decision was made to do a sleep study (even though he still had two chest drains in) on Thursday night. This was slightly different from usual as it was brand new equipment, very exciting..
This however did not happen as smoothly as it should have as poor Dylan spent most of the night being sick! They couldn't get his Hickman Line to give them any blood to test so he ended up having a Cannula put in. His temperature and heart rate were both elevated so they started him on antibiotics whilst waiting blood cultures which take 48 hours, these came back all clear. They also put some medicine in his line to see if they could get it to start working which they did.
Now, he wasn't the first person on the ward to get sick, and he wasn't the last either! Saturday night / early hours of Sunday morning it was my turn which was not what I needed!! I know they can't control what people's visitors might unknowingly bring in, but it took them a LONG time to admit it was contagious and do anything about it. So because of all this I had to stay away for 48 hours which was so hard..
It did mean however, I got some extra one to one time with Bryce and helped him with his Easter bonnet ready for his school disco on Friday..
Bryce also had his own appointment at the QMC on Monday just to double check his lungs were fine. We went to see one of Dylan's consultants Dr Bhatt and then he had an X-ray done to give him the all clear! Dylan's condition is so rare it was highly unlikely that Bryce would have the same issues but it was nice to be able to draw a line under that worry as before Dylan's diagnosis we were worried about different genetic problems.
Dylan also got his Beads of Courage today, these represent his procedures, chemotherapy, X-rays, transfers to ICU, medications etc. He has so many already and they only start from the date his biopsies were taken (21st January) so I hate to think how many more he may have had!!
He loves them and is so proud of them already. It is a wonderful idea and helps give a visual of the journey he is undergoing..
Although we soon realised he is actually missing 32 beads from his steroids and 1 from the biopsy so looks like I shall have to request them and add them in the correct places!!
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