Rohan has always struggled a little with his breathing and during the night he became a little tired his blood gas levels dropped a bit. For security the staff put him back onto cpap but he wasn't very comfortable with this so they decided it would be best to put him back on ventilation. He was relatively easy to ventilate so his lungs should be okay. It may be that he is a bit anemic so he has been given a blood transfusion (what is it about this family and blood eh?) and he has been started on a course of anti-biotics in case he has an infection. There was a bit of gloop in throat when he was ventilated so this may have been contributing to his difficulties but we'll have to wait and see how he does over the next few days. They were a bit happier with him and were beginning to reduce the level of his support this morning.
Category: Diary
The latest news from the Mambo Team
Coming Home
It looks like Vanessa will be discharged from hospital tomorrow. She has come on really well the last couple of days and she looks great (but I always thought that!). She has lost a fair bit of weight and is on a high protein diet to try to boost her up a bit. Her haematology consultant has seen her and told her she has three weeks before the chemotherapy starts. She is just chuffed to be home in time to watch Big Brother!
Rohan is now off his ventilator and onto a CPAP driver (I think that is what it's called). It breaths about 20 breaths a minute for him and he is doing another 30 by himself. I was able to put my hands in the incubator and touch him tonight. He has a very little hairy back and is a real wriggler. We're still praying for him and it will be little steps at a time for both Blake and Rohan over the next wee while. There is so little difference between both boys in terms of looks and size and yet they are separated by their level of progress. Rohan is in ICU and Blake is in Special Care now (he left high dependency a couple of days ago).
She’s home!
Vanessa has come home and it's great to have her here. It's been a long day for her and she's currently soaking in the bath. She'll update the blog tomorrow or Monday with her wonderful adventures! C.
Click here for a great story from Scotland on Sunday
Been on holiday for a couple of weeks?
Well…what do I say? I didn't see that one coming. Trust me to have a problem bowel on top of leukaemia and twins! So much has happened since I updated the blog on THAT Friday night. Charlie's been really good at updating everyone via the blog (aw…bless!) but I'll just do a whistle-stop recap of the last, rather frantic two weeks!
On the Friday night I was taken into hospital, I'd sat down after a nice tea. Charlie had put Amber and Megan to bed and was busy tidying up the kitchen. I came over a bit queer, shouted out "Charlie!" and promptly threw up! Lovely 🙁 I was really crampy but definitely not in labour. After about an hour of being sick (I did catch the sofa just the once!) Charlie had enough of me and called the Haematology Ward. They very quickly arranged for me to go into the maternity hospital. I was thinking I had taken too much mixture to help unbung me and was paying the price for thinking the more you take the faster you clear! (I will not use the words Read More
Countdown has begun :-(
I went to see my consultant last Thursday at the Haematology clinic and my leukaemia continues to be in remission. I have a date for my chemotherapy; well I actually have a date to go into hospital for my chemo to start. It's the nineteenth of June – a Sunday. I'll get booked into the ward on that day, on the Monday I'll have a minor operation to fit a Hickman line. It is a tube that is used to give chemotherapy. The Hickman line is one type of 'long line' or 'central line'. This one will be in my chest rather than the one which I had after by bowel surgery which was in my neck. Once I've had a general aesthetic, I'm operated on under x-rays so that the surgeon can see the major blood vessels in my chest and fit the line to one of them. Once fitted the end of a Hickman line hangs out of the chest and is usually sealed off with a cap. Cool eh? I'll look very fetching with my supa-tube. I wonder if I can put Megan's glitter tape round it to make if funky!
Get Set!
It's been a very busy week since I last posted on the blog. I am absolutely fed up of not being in my own home. What I find most difficult is not having all my stuff with me. I go to try to find something and then realise that it isn't here. It will be three or four weeks before we can move back into the house. We've moved from my Mum's to Charlie's Mum's on South Deeside. Mary (Charlie's Mum) has a fairly big house which can all fit into and, because she is currently on night duty, we have the place pretty much to ourselves. The downside is the extra twenty minute journey to take the girls to Westhill each morning but that has actually worked fairly well. There is space for Charlie to stay here so he's been sleeping here as well which is great!
Go – Hair today, gone 2mrrow!
Had a bit of hair cut today!!! Natalie Portman's got nothing on me! Charlie's cousin, Fay, is the one in the middle of the picture below, she cut our hair (I think she was terrified!-). I went with a No. 8 to start with, then down to a 4 and finally a 2. Charlie went straight to the No. 2 after I'd finished. Charlie's brother, Jacko, even went for the No. 2 cut as well!
Drugs and other chemicals
On Sunday I was admitted to Ward 16 Haematology. It seemed like I'd hardly been away. I know all the staff and the ward was full of smiles when I arrived. This definitely put me at ease. I have a room to myself, which is great, and means that the kids (all four of them!) can visit me in hospital when I can't get out to see them.
After having some initial bloods done in the ward, I was allowed out for the rest of the afternoon. Charlie and I took Amber, Megan and Blake on the big wheel at the beach. My life is so sad that I actually got excited when I saw Cameron Stout (from Big Brother and the panto!) getting of the big wheel just before we went on…I really don't get out enough.
They came for me just after nine to fit my Hickman line. I was sedated and..wow…great stuff. In fact, so good that I have no recollection of conversations I had with staff, a meeting with my consultant…in fact I don't even remember getting changed from my gown into my clothes…for all I know I could have done this at the nurses station or the middle of the corridor!
Just when I thought it was safe
I finished my chemo treatments on the 26th June. To be honest, getting the chemo drug was a breeze for me. I just sat there and it all went on. My hair didn't change colour and I didn't feel any different at the time. I had great week after I received the chemo – I was out to the school to pick up Amber, I went into Cults Academy with Charlie to let everyone see Blake and Rohan, went out for bar lunches and generally had a fantastic time.
Charlie and I went to see "War of the World" on Friday night, I was feel fine but about half way through I started to get tired. We passed on a night cap (poor me!) and went back to Charlie's Mum's (where we're staying). I didn't feel too great on Saturday morning, my mouth was really sore. I had a couple of huge mouth ulcers which made it difficult for me to eat or speak, These gradually got worse during the day and my whole mouth began to feel incredibly sore – so much I gave up speaking and resorted to grunts and pointing.
It’s been a while since we talked…
A lot has happened since I updated my blog at the start of July. I was really pretty down at that time. My blood counts were through the floor and I'd just had such a great week – I really did think "Hey, this chemo is a breeze. Nothing is going to happen to me!" and then BANG…I woke up one morning with a bit of a temperature and hundreds of tiny red bruises all over my legs! Basically I could have picked up some infection AND my platelets in my blood had fallen so much that my blood wasn't clotting and I was getting these tiny red bruises! I spent four or five days in hospital where my blood counts were upped by transfusions of platelets and blood. I really struggled in hospital, my mouth was sore and I really didn't want to eat anything. I have more tablets to take than a bus full of pensioners on an outing and I've lost so much weight that I officially have no bum!
I was discharged after a few days and had to go into the day clinic every day. We were still staying at Charlie's Mum's House – all six of us. The boys were sharing a room with Charlie and me – I was waking up every time the night feeds were being done and I was getting more and more tired. I was home for three days when I discovered a irritation round my neck – which over a 24 hour period slow crept down my body to make me look like I had all over nappy rash! Charlie took me into the clinic again (on the 12th – I think) and I was admitted again. My counts were low (my platelets) and I had taken an allergic reaction to one of the many anti-biotics I was taking to fight infection. I took a funny turn after receiving a bag of platelets in clinic on the 12th – I started shaking uncontrollably – very weird. I got a shot of Piriton and I was right as rain (apart from being back in hospital – AGAIN!). My hickman line was taken out because it wasn't working. The doctors think that it was an infection in my hickman which was putting up my temperature and the same infection was blocking the tubes in the line. This does mean that I will have to have yet another surgical procedure to fit another hickman…oh what fun!