More updates on our day to day with our young man Joshua. Andrew and I are doing well, thankyou for your well wishes and messages. We are all doing ok.


This morning the epidural was switched off – it wasn’t working correctly, being patchy, sometimes blocking other times not. You could tell by his toes, whether they were cool or toasty and he let us know his discomfort. Perhaps it moved, no one is sure, so it’s off. His Fentanyl has been increased by the anaesthetist, and boluses given when required, like when it’s time to move him. Its difficult getting the dosage just right, we want enough to cover his pain but not too much to knock him out completely. Drowsy is ok, I’d rather he slept through recovery rather than hurt.

One i.v. has been taken down, as there is no need for glucose anymore, his BSL’s are high most of the time anyway.

Most of the morning he was uncomfortable, and the fierce teeth grinding would have had Wendy wincing, but by the afternoon the dr ordered the medication to be upped again and he spent the afternoon sleepy and fairly relaxed.

When his temperature went up it set everyone into a spin again as they tried to find the cause. An infection is the last thing he needs. First his epidural was removed, no pain or redness there, but the tip was sent off for testing. Even though he had bloods taken earlier in the day, they now needed a good sample for culture tests, but it was easier to get blood as he was relaxed.

By 1pm he was looking hot, but sleeping. His face now has good colour and his lips red instead of pale and he looks peaceful.

Everything is done; all that is left is cool sponges and soothing words, willing him to rest, to relax and to heal.

The afternoon was easy, he was comfy and we had visitors to talk to.

Another day done.



3 responses to “

  1. thanks for keeping us updated, i check each day for your entry, glad to hear the staff are on to it, stay strong, xxx

  2. poor little bugger…what some kids have to go through….he looks very pale in this pic Tan, but he does look relaxed. Thinking of you XOXO

  3. Glad to hear things are going well. Thinking of you all. xox

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