Sorry there haven't been many blogs this week... Alex has had a rough time since Sunday and we seem to have been much busier than we have been before......
Probably due to the amount of drugs that Alex is now on...all the usual suspects...plus Morphine/ketamine mix, extra antibiotics x3 because of temperature spikes, blood, platelets, anti sickness, drugs for high blood pressure, drugs for his liver because of raised something or other...magnesium, potassium, drugs to make him wee and of course his TPN so that he is at least getting some nutrition to keep him going.
He has lost quite an amount of weight this week.... can't wait for his mucositis to heal so that he may be able to start eating and drinking again....he is shrinking before my very eyes!!!! :)
His hair dropped out, very much like pine needles dropping off a Xmas tree!!!!! All at once!!!!! We had to scrub the last few annoying clumps out, as every time Alex moved he got showered in little bits of itchy hair.... poor boy!! :((
He has been really poorly this week...the Docs are amazed at his stoic nature and the Pain Team...( yes I am still giggling) commented today on how little extra morphine he was using for the severity of the Mucositis.....I'm so very proud of him...even though he has been feeling rubbish, he has been lovely and polite to everyone and is STILL remembering to say thank you to all the nurses and doctors...
Our Nurse today said that she has rarely seen a child with Mucositis this bad stay so upbeat and outwardly well and happy....she is amazed by him...as are we, every day!!!
He is feeling a bit fed up at the moment....he has just kind of realised properly that there is NO WAY he will be at home for Christmas.... So.....understandably he is a little teeny bit down.....I'm sure that come next weekend he will be fine..... ( I hope it's not too depressing here....although apparently, last year, the kids got Heinz Soup for Xmas Dinner from the kitchen!!!!!!!!)
His White Cells are recovering quite well...they are at 0.4, and have been creeping up very slowly every day...we have had a slight drop in Neutrophills....gone down to 0.1 from 0.12......quite normal by all accounts.....just hoping they don't stay down for long..........fingers and everything else crossed.......we need them to keep going and not start to fail....PLLEEEEEEEEAAAAAASSSSSSSEEEEEEEEEEE!!!!!!???????
He is a bit croaky today, as you can hear on his diary, but they think it is just due to healing of the mucositis....if it carries on they will have to check him out for other viruses.....
All in all...as we have all ALWAYS know........ Alex is an ABSOLUTE superstar and is taking it all in his stride and staying very positive and happy...(the PS3 and the Wii are helping tremendously with that!!!!LOL)
It is taking its toll on us all a little...we are all tired and miss home terribly........ Can't wait to see you all again and live a slightly more normal life (unlike here...... where random people can just walk in whenever they feel like it and you have triple hepa filtered air conditioning that makes you feel like you are on a long haul flight all the time...... YUCK)
Here's hoping for more positives this week.
Lots of love, as always.......miss you all lots XXX
Dear Alex
ReplyDeleteMerry Christmas. Hope you are feeling better and hope you have a fun Christmas, Thinking of you, love Dara.
Alex, you are as brave and super as ever! We're really looking forward to your return. With much love, Aine
A blonde (Lou H)and a brunette (Lou A) jump off a building
ReplyDeletewhich one will hit the ground first?...
The brunette (Lou A) because the blonde (Lou H) would have to ask for directions!:) xxxx
By the way this is from Alice !!
hey Alex this is Rose, I have a joke which you will hopefully enjoy reading, here goes.
ReplyDeletesomeone stole my milk the other day.
how dairy
Good to see you on the blog again Alex, hope you continue to feel better and are able to work your way through every type of iced confectionary available! Ben is really missing you and is always pleased to see your video blogs. We all think you are all doing exceptionally well,and are proud of you all. Hope you are feeling much better by Christmas day and get something tasty to eat - turkey flavoured ice cream perhaps???
ReplyDeleteDear Alex,
ReplyDeleteMerry Christmas. Hope you're feeling better and having a fun Christmas. Here's a joke for the Joke of the week competition: I went around to a friend's house today. His wife was there with their new-born baby. She asked if I'd like to wind it. I thought that was a bit harsh so I gave it a dead leg instead!
Best Wishes DaraJ