Normally I would write at about 3 in the morning after I’ve changed the boy and put him down, but he let me sleep until 8ish this morning. In fact it was the nurses who woke me up. What do they think this is? A hospital!
The day has been good. The best news is that he had his first proper breastfeed for about 8 days. It was so good to watch him, and he was so settled after. Surprisingly, Karli didn’t shed a tear – I came close. I think she was just so relieved for him to latch on and keep going rather than pull off like he has done for the past few attempts. The funny thing is we had just had a bit of an angry moment with the nurses over storage and use of Karli’s expressed breast milk (that’s EBM for all you who like TLA’s). It’s not an issue at the moment I suppose, but it may become one again, so better to sort it out now. Oliver’s morphine keeps coming down, and he is off his ketamine (yay).
We have been a little bit concerned about his level of anxiety. The rule is that he gets 3 taps on his foot before he receives any attention that will cause some pain. Unfortunately this rule came in fairly late and Oliver had already received a number of painful treatments. It seems that he has attached painful treatments with having his blankets removed. This means that he seems to get worked up whenever he is uncovered. At the moment he doesn’t receive too many painful things, but he is getting agitated whenever we try to change him, or go to pick him up, or just lay him down. This has become a little worse as the morphine wears off and he becomes more aware of his surroundings. Tomorrow we will see Ranita, the OT, and possibly Lousie, the music therapist, who will help us to put into place some things to help him identify ‘safe’ times.
Oliver also seems to be losing more hair every day. It isn’t coming out in clumps, but there is more and more hair left where his little head has been laying. It won’t be long before his hair, eyebrows and eyelashes are all gone. Dad had a sympathy head shave today. It’s not all gone, but I will complete the job when all of Oliver’s starts to completely disappear. There is a potential positive to this side effect. If the chemo is affecting his hair, that means it should be affecting his cancer too. That’s probably a good way to look at it.
We are starting to go a little stir crazy. We are still hoping to go home on the weekend. There’s no place like home.
1 comment:
I can't imagine what you must look like with parts of your hair gone!!! Which parts did you remove and what parts have you left? I certainly hope that your head is better shaped than the lumpy thing God gave me!
As a nurse, I am curious to know what they were doing with Karli's breast milk. Is there a black market for such a thing?
I am glad to know that you are possibly going to be home this weekend. You are right, there is no place like home and your own comfy bed.
Your Canadian family continues to pray for Oliver's healing and strength for you and Karli as you travel along this difficult path.
Hugs
Nancy
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