Tuesday, September 1, 2009

The Training Begins

Tomorrow marks the beginning of our training as we prepare to learn how to manage Samuel's care once he is able to be discharged and come home. The surgical team came around today and Samuel's surgeon recommended that the catheter draining from Samuel's left kidney and into a catheter bag be taken out tomorrow morning after another ultrasound scan to check the condition of the kidney. We will then be taught how to re-insert the cathether tube up the left ureter and into the kidney which we will need to do 3 times per day to drain the urine. It sounds daunting, but apparently it's not so scary once we get the hang of it. The next step will be to remove the cathether tube draining from Samuel's vesicostomy and then for us to learn to re-insert that catheter 3 times per day to drain the urine from the right kidney. Once Samuel doesn't have catheter bags attached to him all day, which could be as soon as next week, we'll be able to get him out for a short trip to the world outside in his buggy with an oxygen bottle underneath. It will be an exciting day when we can all do something 'normal' together such as feeding the ducks in the park next door.

Once we've learned how to manage Samuel's catheters, it will be time to learn how to give his nutrition intravenously (TPN) at home. There are about 10 families in New Zealand with children living on TPN, so although it will be steep learning curve initially, we know others have managed to get the hang of it with close support from the hospital and the TPN supplier.

To give us something to look forward to, we've booked a week's holiday this summer at a holiday home at a nearby beach north of Auckland kindly made available to families such as ours by the Immune Deficiencies Foundation of New Zealand IDFNZ www.idfnz.org.nz . The thought of having Samuel at the beach and outside of Auckland is beyond our ability to imagine right now but we have the faith to believe that by January 2010 it won't seem such a big deal.

Good night all


Anonymous said...

it is amazing to think that soon all those tubes may be out and samuel might be heading home. Will be thinking of you learning the ropes - I am sure it will soon become second nature for you but no doubt daunting to begin with. Who would have thought you would be planning a holiday....... it is really wonderful to read the blog tonight. I can imagine you guys pushing samuel out for the first time, what a special moment that will be. lots of love

Susana Asin - Verrier said...

You will all do great taking care of Samuel... God has been with you all this way giving you extra strenght and wisdom and he will be...
Love, Susana and Gui-Laurent

Hamish said...

Wow! How exciting. I can't comment on the catheters side of things but as for tpn while it seems full on to start with, it's actually a very simple process (especially the home stuff). You can always ask us for support and help with it too. Really glad to hear you've booked a break, the kids foundation are awesome. Look forward to hearing how training progresses and to the wonderful day when samuel gets to go home.

Margo said...

Wow - A-M-A-Z-I-N-G. What an incredible journey. God is good :)
Love Margo xxxx

The Heslop Family said...

So good to read your blog today, and be encouraged that soon you'll all be getting out and about. Can't get over what a gorgeous, 'chubby bubby' Samuel looks in those pictures; just delightful. A beach holiday - what a fabulous idea.
Love and hugs, Bron and the boys xxoo

Anonymous said...

How fantastic to read tonights blog.. Bless you guys and cant wait to hear about the first day out..

lots of love

Anonymous said...

he is looking so lovely in the photos, you'll do just fine with your lessons! it may take some time but soon you'll be catheter experts, looking forward to hearing about the trip out of the hospital lot's of love merrw