And so it continues

We had to take Ben back to the hopsital on monday as he was in so much pain. Luckily we got to see our usual consultant who knows him well and is lovely. She decided he still had an infection inside from the tube site as he was very tender and swollen. She changed his antibiotics to augmentin.

We looked at the xray and she felt the amount of gas and the pain he's been in indicated a bad flare up and a lot of inflammation. We debated more steroids but decided to treat the infection first. We are back at GOS on Nov 3rd. These antibiotics do seem to have helped and he is no longer crying anytime his tube moved or holding it up as he walks around.

His bowels are being very odd and I had to change 3 dirty nappies during the night on friday. Only one last night but he's not done that since a baby. Between that and the pump not much sleep for us.

We took him to see the physio and she confirmed hypermobility in his fingers, thumbs, wrists, elbows, feet, ankles, knees and found him particularly weak in his hips and pelvis. She has asked we be seen at the hypermobility clinic at GOS. We got him some boots to wear to give more ankle support.

We are having bad mornings with Ben at the moment. Hysterical crying when he gets up. Not sure why. Also meal times are fairly bad with usually at least 2 out of 3 him being on someone lap and spoon fed or he won't eat his cornflakes. Izzy finding the screaming very distressing.

Iz improved on the steroids but still some pain and distension. She is being reviewed by our local con on tuesday. Getting her seen by the physio too.

Ben got all the bloods the dietician wanted done plus his immunoglobulin levels on thursday then community nurse friday so a week of hospital appointments for us just when my husband goes to mexico for 9 days tonight! Thank goodness for my mum!!!!!!!!!!!!!

ShareThis