Thursday, February 25, 2010

Getting Closer........

I think we just have to get used to the idea that dates will change from one day to the next. We were supposed to meet with the BMT Dr on Thursday for our final appointment before admission. I received a call at 8pm Tuesday evening asking if we could instead come in 9am tomorrow (Wednesday) as there was not enough time to see us on Thursday! So, we had the appointment today.

All went well and we have been given the all clear to proceed to Hickman line placement on Friday 26th. We need to check in at Day Surgery by 7am, be at Oncology by 8am for Max to have a platelet transfusion – required due to him being cut open for the Hickman surgery – then wait to be called to the Surgery Ward for the line to be inserted. Max will need to fast from Thursday midnight until after the surgery – this will be a challenge! As many of you know I have been very nervous about the whole Hickman line bizzo (infection, bleeding etc.), so I was relieved in a way to find out that Max is required to stay in hospital till Sunday - to get over the anaesthetic; and as he will have a lot of bruising, he may need further platelet transfusions. Oh well, it’ll be a great way to give Max a taste of what it will be like for the next couple of months.

This means I only have tomorrow (Thursday)left to get myself organized before the surgery. I’ve been asked to design/prepare some singlets with a pouch for Max, so as to keep his new Hickman line secure. I’ll have to drag out the sewing machine tomorrow and get crafty! As a way of getting Max used to having this line in him permanently (for the next 8 months at least) we’ve been told to give it a name. Any suggestions?? I thought perhaps “Mr Hickie”……but that just doesn’t sound quite right???

Some dates:

Transplant admission date is set for Thursday 4th March! A little sooner than expected – but that’s fine, less time for us to worry and wait! (How’s my positivity!?) Max will start with oral chemo (5th to 10th March – 16 tablets every 4 hours!), then the ‘hard core’ intravenous chemo (10th to 13th March). Sunday 14th March drug free (rest) day. Monday 15th March Max will receive his new stem cells (cord blood). If all goes to plan (with no serious reactions/side effects from the chemo or stem cells) we are expected to be in Hospital until the last week of April – I can handle that!

We’ve been told that we can bring in some of Max’s old toys, as long as they can be wiped down/sterilized. But, I thought it’d be a nice idea to buy some new clean fresh toys, so I bought some new ones today. I know I'm probably being over paranoid…but I think I’ll sterilize/disinfect these new ones too! We can take in soft toys – but due to increased rate of germs on them, we’ve been told they must be put through the wash minimum weekly…..so, I’m not too keen on Max having such toys in there. Luckily Max prefers, if anything, to cuddle up to his matchbox cars at night!

I’m not likely to post again until I’m back home after Max’s Hickman surgery on Sunday….so till then, wish Max Hickman luck!

3 comments:

  1. Hello Bee - so glad to hear everything is moving forward. I think buying new toys was an excellent idea! As for having to sew and design singlets with pockets - well, it's lucky Mack had GT not BMT as I dread to think how any singlet I sewed would have turned out. As for a name, perhaps use the first name of one of the two Drs who are Wiskott Aldrich? Their first names were Robert and Alfred - Alfred sounds like a good name! "Come on Alfred, let's go for a walk" What do you think? Memorable, not easily confused and sort of cute! Hope you are all sleeping and eating OK and that the year flashes by till Max is cured.
    Love,
    Sue xx

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  2. Hi Bee,
    Things are moving forward-quickly! And you are doing great handling these changes that are being thrown at you! I'll second Sue on those singlets-first off, I have never used a sewing machine...I cannot imagine what my "thingie" that I turned out would look like. Good for you.

    I know that you will be worried no matter what, but the Hickman placement should be an easy in and out for Max and for you.

    Many kids seem to end up calling them Tubies or something along those lines, but I love the concept of taking Alfred for a walk! You are lucky you have Sue for company right there. She and Bob can get a smile out of anyone.

    With all good wishes,

    Sumathi

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  3. hey love, finally tapped in with Oscar...who said oh max, poor max, max is sore....then saw the pic with Max smiling & said all better :). Keep an eye out for Tali (Oscars friends Gileads mum, cant miss her as she has an Isreali accent!) It will never be the same as mum but I know (sort of) whats happening etc. Just know that our thoughts & love are with you.

    Claire & Oscarpus

    PS "h" for hickline maybe Henry or something beginning with h

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