Today Samuels breathing improved and he is definitely more alert and happier. He is coughing up a lot of gunk and that is good news. His chest sounds less wheezy, but still a bit rattly.
His liver numbers continue to go down, now into the 70's. The milk formula he was changed to to see if his system can cope with partly processed milk rather than totally processed has been a success. He continues to take it and the right amount comes out his ilieostomy bag. Now that he is on TPN for only 18 hours a day he is really getting hungry around 4pm. Because he is so hungry he is much more desperate to drink from a bottle, so he is having around 30 mls of pepti-junior (milk) orally each afternoon. And the good news is that it is managing to continue on through his system.
So we've been encouraged this week to see lots of little improvements.
No-one is rushing to get us home as we want to ensure his breathing is back to atleast what it was before (.5 litre o2). So we could still be in hospital for a few days. We are making the most of the time to sort out some people to offer respite care/home help which is being funded by various grants/trusts. It's great to have this facility and we will be making the most of it, to ensure the general well-being of all 5 of us!
Tonight was hard with the girls - we thought they had been doing so well, but tonight there were lots of tears and big questions and anger flowing about being here and not Laos. With their child-like minds they want simple answers, but there aren't any.... so they are frustrated as don't feel that I'm answering them. It is hard for them going back to 'parent swap', so we are trying to give them some slack, but it is heartbreaking to hear some of the things that come out of their mouths..... but we've always said they can talk to us about anything anytime and I'm glad they feel they can......even though we don't have the answers.
I dropped Mum at the airport this morning so she could get to Napier to see her newest grandchild. Congrats Justin & Elaine - we look forward to meeting little Mackenzie Bell sometime.
I'm tired - Samuel slept well last night, but the baby next door didn't...... may take in earplugs tomorrow night!