Monday, October 31, 2011

Transplant Day +21

Three weeks ago today... my boy received his sister's bone marrow... We kinda knew things would be hard... but oh dear... we didn't account for the exhaustion...

Thanks to our amazing nurse, Carl, I was able to have 3 hours sleep last night whilst he sat with Logan... who got basically no sleep.  Logan, with support from Carl and I, spent all night with stomach cramps, passing blood, pieces of his stomach and intestine lining, and vomiting. His weight is now down to 73.4kg and they are replacing 4hrly, what his output was for the previous four hours.  During the night, Carl gave him platelets to try to slow the bleeding, but this can also cause problems for his VOD as we don't want the veins in his liver to clot more than they already have.

As usual, I text Evan this morning when I felt I needed to put my head down again... He arrived quickly, as usual, then his phone went off with an alarm, and we both realised he has a conference today... so back for a shower. Evan discovered that his conference doesn't start till 10am, so he has popped back here for a short while, making me a coffee and toast... such a sweety!

Big hugs to Dan and Charlee who visited Logan on Saturday arvo fresh from the Armageddon expo, bringing him a goody bag which contained signed posters, badges, a frisbee, and other paraphernalia...  They even got a large dedicated and autographed photo (which they didn't have to pay for) from the voice of Bumblebee.  Apparently the guy was really nice when he heard it was for Logan.  Cousin Chloe was coming to visit on Sunday, but Logan was too exhausted to entertain, he said, so she is hoping to come back today instead.

Speaking of Logan... LOL... the significance of his having one to one nursing is only just coming home to us... we assumed it was because they were low on patients, but in actual fact it is due to his high status as a patient.  We also discovered that they are only putting senior nurses with him... not sure how they qualify for that as their ages tend to differ... vary... not sure which word to use!

I imagine, they have also put the words 'difficult parents' on Logan's folder. LOL.  But I am passed caring... Every thought we have goes into Logan and Brad and Charlee and how we can make sure we are meeting all of their needs... This tends to make us (me) a little blunt at times, and a little pointed, but I will issue an all encompassing apology later...

Opps... sorry about dashing off like that... just spoke with the docs.  Logan is not responding to the steroids as they had hoped he would.  They are going to talk with the transplant team about doing a bowel biopsy to confirm the diagnosis.  If it is not GVHD, then they need to find out exactly what it is and fix it.... fast!

The doc said, at this stage they are not sure it they are dealing with a blip on the screen, which will last 3 days, or a blip that will last 30 days... We plan to spend Christmas  in our own house, so they had better get their act together me thinks!

The boy has now been sleeping an hour and 4 minutes... a small miracle... his Dad just left for his conference and kissed him on the cheek and he didn't even budge.

May I send out a request... Logan's favourite movie is 'RENT' which is about people facing their own demons at the turn of the 21st century.  If anyone can find a copy and buy, hire, or steal it... (just kidding), I would be very grateful... Logan gains strength from it...  I doubt it is watched very much so we might be able to hire it for a couple of weeks.  Hillcrest Video has it I think...

Have also just discovered that my big boy (Brad) has been basically living alone, as Charlee spends most of her time with Dan.  If any of you have spare places at your dinner table, or time to stop by for a coffee and a play on the playstation, please help a Mum to reach out to her son... We are stretched too thin...  I miss them both terribly, and Brad refuses to read this blog... he finds it too depressing...

On a positive note (so there Brad), Logan has now been asleep for 1 hour and 12 minutes! A newish record!

Just got Logan's bloods from our nurse Sabrina...
Hb 127 (yay)
platelets 22 (will need another transfusion due to blood being passed)
White cells 3.43 (yay)
Neutraphils 2.54 (yay)
Bilirubin 46 (boo - hopefully this is due to the diarrhea)

I am going to ring a friend of mine who is a Gastroenterologist (yes I mean you), and ask about this gastrointestinal GVHD and the implications of a biopsy... knowledge is power!

Logan has now been sleeping for 1 hour and 41 minutes.... yay....

Send 'solidifying' prayers to my boy...

love and hugs

1 comment:

  1. Is it this film ??
    If so I have reserved from Auckland libraries and can drop it off when it arrives :) . I dont think it is on loan at the moment, it just needs to be delivered from another library so hopefully should only be a day or two?

    Rowena :)