Tuesday, February 1, 2011

Clowns, Toes, Vitamins and more....

Sam seems to be responding well to the various changes in meds and has only been having temps in the mid-late 37's. His circumcision has been cancelled tomorrow, but the surgeon popped in tonight to say that they would try and get it done when he is well enough and before he gets home... so hopefully that's early next week.

Vitamin D: For the past year we've been told Sam's vitamin D levels have been very low. Bizarrely it was decided to send his last blood test down to Christchurch to a different lab and it seems they test for vitamin D differently and he actually has normal vitamin D, so as of today his daily vitamin drops have stopped. I'm a bit perplexed and just don't get it but hey ho.... if it's one less problem that's fine with me.

Toes: Jas had her cast taken off today after an x-ray and it did make my stomach churn, but apparently it's looking really good. It is black and grosse and has a pin sticking out about 2 cms but the surgeon happy with progress and has put her back on antibiotics for a week and sent her away with strict instructions to keep it dry, clean and to promise to watch lots of DVDs. So she's still on crutches and it was bandaged but not cast.

Clowns: TV3 were on the ward today filming 'The Clown Doctors'. This is a relatively recent addition to the hospital. They come in groups of 2 or 3, with red noses, gawdy clothes, ukelele's and bubbles and ham it up with the kids. Personally I'm not a huge clown fan, but anything that can help the kids escape from where they are and the sadness and discomfort of why they are here, and to laugh, sing, clap and escape in to the magic of being a child again is a good thing. Sam is a little young to get who they are, but often he is stuck in his cot for hours at a time on a medical infusion and the boredom and monotony of chronic illness means he can take a lot to entertain....so these clowns come in with their songs and bubbles and silliness and momentarily Sam is distracted and entertained, joining in with them when he can. So if you are tuned into TV3 tomorrow you may see Sam on the lunchtime and evening news! Check out the link on the right column titled Shirley and Sam on TV3 news. http://www.3news.co.nz/Clown-Doctors-out-to-prove-laughter-is-best-medicine/tabid/309/articleID/196851/Default.aspx

TPN trial: Even though Sam had a rather awful day after his first night off TPN, they are still saying it was a success and we will continue with 1 night off each week. The bad reaction was due to bacteria not lack of TPN, as his fluids/weight and bloods showed all was good.

His Central Line: This is his life line. Debate is rampant, some want to whip it out, others want to try and attack the line with more different meds..... so I'm a bit confused but definitely want to do all we can to save this line. I've met kids on this ward who have no more veins available so are neither able to receive nutrition or be considered for transplant. So we aren't going to casually let this line go without ensuring all has been done to save it.

School: The girls started school today and seemed happy enough, so hopefully the routine will help them to cope better with our crazy hospital life.

A plan? Just waiting to see Sam back at 37 degrees....and then we have to wait atleast 48 hours before heading home... but only once a course of meds has been decided by ID (infectious Disease), so realistically as it's Tuesday night, he still has a temp, we're in till atleast the weekend.



Anonymous said...

we hope you are sleeping well and are as ever thinking of you often, though we need a new photo for our fridge Sam is looking so grown up!

Samantha said...

Thinking of you and hoping you are able to get home very soon! I loved seeing you guys on tv, brought a tear to my eye seeing our ward again and you spoke really well Shirley!

Anonymous said...

Go you super mum Shirley on TV. Wonderful to see Sam smile, he is such a beautiful boy!!

The Doughertys said...

Prayerfully thinking of you all. Much love, Fi