We had some wonderful visitors this morning to cheer us up after another tricky night with Ted waking me hourly crying.
Ted was thrilled to meet precious new baby Amity and then a little later very excited to see Kahlee especially because she brought with her some amazing Iron Man gloves and a Light Saber!
Ted was so brave for the dressing change today. Here he is sitting up on the treatment table with his number one distractor for procedures- Angry Birds!
Afterwards Ted’s reward was a sticker on his bravery chart and we let him open his new Light Sabre.
Not long after we had a psych consult, then the cardiologists sent us down for his ECG and echocardiogram.
I had a long consult with a very nice haematologist and the haematology CNC today. They went through the complexity of one of Ted’s new drugs (he has so many now) -my most hated Warfarin (Coumadin) and I’m even more rattled about it than I was before.
He had his INR blood test yesterday and unfortunately threw another silly result so we have to re do the blood test tomorrow. I’m pretty bummed that his ongoing monitoring has to be back out at Westmead until Ted’s INR is stable. Such a long drive for Ted and I especially when we have Monte climbing all through the car!
After building his piggies a new “naughty pig house” we got some stellar news…
We were given the go-ahead to take our beautiful boy home! On the condition that we report back tomorrow. No problem~ we will be there!
So… We left!
Once we got home and gave Ted his night time meds he was very quick to snuggle wih Tabitha for some bed time reading. Here he is, right where he belongs.
We really are so thrilled to be home. Knowing that quite a few other kids with the same condition following the same surgery are in the hospital still and have been for MONTHS… We are blessed to have our boy back. He has bucked the trend and beaten the odds. How’s that for a double cliche?!
Since he is home very soon after his drain removal instead of being observed in hospital we have been told to be extremely mindful of the high risk of fluid recollecting in Ted’s lungs. While we are back out there tomorrow for bloods, a check up and another dressing change it still feel amazing to be home.
We are so grateful for the care we received and I’m working on a suitable gift for the nurses. It is rare to come across a dud nurse out there. They really are fabulous.
Erin M. said:
So glad to hear Teddy has come home. Have a look at a device called a coaguchek. It’s like a blood glucose monitor but for checking INR. It only requires a finger prick rather then a full blood draw. Most pharmacies should be able to order one in, including the one I work at.
Thanks Erin we have looked into it extensively and the coagucheck requires quite a bit more blood than a blood glucose monitor which accepts a tiny drop so it leaves the finger pad quite sore for days so for Teddy it would not be ideal. The haematologists prefer venepuncture a until the INR is stable anyway.
Erin M. said:
I was pretty sure you would of heard about it. Bummer that it’s not suitable. Hopefully Teddys INR stabilises soon.
This is wonderful news to hear Teddy is home.. what a champion. Lovely to see him snuggled up with tabby. Enjoy being in your own home there is nothing like it. Hopefully you can now get some much needed rest in your own bed. xxxx
That are all really really great news!
I’m so glad:)
Sleep well sweet family
Oh so happy for all of you – yay!
Yipee!!! Fantastic News! xx
Joanne Crisp said:
Awesome news Galvin’s. Way to go Teddy. You are a superstar little man. Xxx
Great news! Can imagine you will all sleep like logs tonight – especially you after so many nights on crappy fold out beds. Hope you also enjoyed having a shower in your own clean, yummy, private bathroom!
Such wonderful news!!!!!!!
So happy for you all!!!!!! Xxx
Kristina Cabala said:
What a great outcome after such a difficult journey. From now on I shall call him SuperTed – light sabre and all! What a strong little boy he is – supported by a super strong family. Loved the photo of him with Tabitha 🙂
The photo of Ted with Tabitha snuggled up in bed melts me. So utterly happy to see your beautiful boy home safe and sound. xx
Joanne Rose said:
Such wonderful news!
Just caught up, best news ever!
Hope the rest of recovery is smooth sailing 🙂 xx