Monday, November 7, 2011

Transplant Day +28

Bloods:
White cells: 7.25
Neutraphils: 5.95
Hb: 96
Platelets: <10 (at least one, possibly two, transfusions today)
Bilirubin: no result back as yet

Morning all...
before I came on line, I was trying to think of lots of positive things to say... my blogs of recent, have been somber and low...
- Logan is pink and breathing (LOL)
- Logan has balloons in his room
- Evan and I are happy and strong
- We have a house
- Brad and Charlotte are happy and healthy (although fighting like cats and dogs)
- Logan has a pretty nurse named Sabrina today
- Logan has 1-1 nurse care today
- Logan cracked 2 jokes at 3am this morning
- Logan's pain is not so severe as in previous days
- We got to see Nana and Grandad, Paul and Yvonne, Rosie, and Charlotte on the weekend
- Logan has more money in the bank than us! (although that may not be a positive point... LOL)
- Logan is using his small bag of big puns every day to give himself something to smile about
- I have had more sleep in the last two nights than in the last two WEEKS put together
- Logan got to watch RENT thanks to Jill (and thanks to everyone else who found it for us also...)
- We had a lovely bacon and egg pie courtesy of Jill the other day... which lasted several meals... YUMMY
- Evan fixed Logan's door so that it doesn't bang and wake him up anymore
- Logan is having periods of sleep now ranging from an hour to four

The docs are about to come in... will give a briefing to you shortly... must be cup of tea time!

Hope you enjoyed your break... here is the latest info:
- Logan's BP is far too high
- Vomiting and passing blood - vomiting only about twice a day
- Totally without energy
- lost his funny bone

What the doc said:
- in general, skin is improving
- feet still dry
- cyclosporan causing hot flushes
- stomach still tender
- bowel sounds active but not overly
- more albumin today - two different concentrations
- start betaloc (blood pressure med) today - twice daily - pill form (lord help Logan)
- still waiting for biopsy result
- platelets twice daily maybe - possibly small tear in bowel
- fluid still in organs - albumin level still too low - will give more today to bring fluid back into blood and capillaries
- 20% concentration of albumin over 8hrs
- all other fluid replacement will be 4% concentration of albumin instead of saline to help re-hydrate

I feel I could comfortably say that Logan is probably the sickest child on the ward at the moment. He is the only one with 1-1 nursing.  His doctors meet for half an hour in a large group before they even come and see us. Logan has a strong mind, but his body is growing weaker daily.  His is even struggling to get into the weigh chair now, and this has to be done twice a day!  Today when I asked him to prick his finger for his blood sugar reading, he told me to do it! I have never, ever done it before! He hates having it done!  The reading was he highest ever at 20.6, requiring both Novarapid and Protaphane. When Logan is asked how he feels now, he no longer says 'fine', he invariably says 'shit'.



Evan comes up in the morning to see Logan, and to hear the doc report, and then leaves (as he has just done so), to go back to the house and work... It is strange how life goes on... When Evan left he said he was heading 'home', and although we laughed, we realised that this is probably going to be home for longer than we expected.  People's lives continue as before... school, work, hobbies, moaning, gossip, laughter, joy... it all goes on... but we seem to be stuck in some sort of loop... slowly family and friends  have gone back to their lives... as they need to... this blip is our lives is never ending... but a few have remained at our side... phoning, texting, sending letters and packages, coming to visit, lending an ear... long past the obligation 'use-by' date... thank you for that. And almost all of you are from home...

Speaking of home... thanks to everyone who is looking after the kids with meals and invites out.  Thanks to Rosemary Aldridge who is looking after our chooks, and Brad who is caring for the cat and fish.  Hugs to Dan and Charlee who did a big clean up of the house the other day and mowed the lawns, and to Alex for watching over the fence.

Today we have been in Auckland non-stop since 24 September - 45 days... feels like more and less all at the same time. During this time Brad has turned 21, Grandad has turned 84, Logan has had his 1 year anniversary of his diagnosis and he has had a bone marrow transplant... Our darling friends Jae-Maree and Phil have brought another beautiful boy into the world and a doctor at our surgery has lost his son... I could keep listing but you get the point... life has gone on...

love and hugs to all....

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