• About

teddyhasaspecialheart

~ My Little Boy's Fontan Journey

teddyhasaspecialheart

Tag Archives: chronic illness

Two sleeps

23 Monday Feb 2015

Posted by carolyngalvin in Uncategorized

≈ 11 Comments

Tags

anticipation, CHD, Children's Hospital Westmead, chronic illness, Fontan, HLHS, Open Heart Surgery, staph, surgery

“Two more sleeps til my operation, I’m scared I might die.”

Ted’s words today came at me like a very sharp kick in the guts.

There is no terror in the bang, only in the anticipation of it.

Alfred Hitchcock

Anticipation is indeed something that can terrorise even the littlest of people.  Knowing Ted, this is why I chose only to drip feed tiny bits of information to him about his operation. I don’t know how he made the correlation between his surgery and the very real risk of death but he did. And it was a very sad thing to hear.

We are doing our best to put his mind at ease, all the while hiding our own very real fears. This is a challenge in itself. One of the hardest things on the day of surgery is making the very long drive out to Westmead pretending to be chipper for Ted’s sake but feeling the dread building with every kilometre. Such a hellish drive. Then the long walk to the anaesthetic bay, that’s another journey we try to make fun for Ted while fighting back massive sobs.

Today and tomorrow we have to wash Ted in this weird pre-op stuff that smells like flea shampoo (he is Staph A positive) but it has the added bonus of giving him cute hair: 

IMG_0071-1

Rich and I will spend the day with Ted tomorrow being an only child for a day, doing fun things ahead of Wednesday. Wednesday won’t be fun. Today after dropping Tabitha at school at 8 o’clock in the morning I let Ted have this green frog cake full of sugar and rubbish. Just because.

IMG_0051-0

Friday will be a big day for Teddy

12 Thursday Feb 2015

Posted by carolyngalvin in Uncategorized

≈ 6 Comments

Tags

Australian healthcare, bureaucracy, chronic illness, communist, Fontan, get to the back of the line, pre-admission clinic, public hospitals, red tape, yes minister

Tomorrow Ted and I have to be at The Children’s Hospital Westmead by 9 am for his pre-admission clinic. It represents everything our underfunded public hospitals stand for~ queues, red tape, frustrating people and pain. Excellent. My kind of place, my kind of day. My love-hate relationship with this hospital will be a common thread in my upcoming posts I am sure.

Pre-admission clinic is a day of testing for Ted. Imaging, pathology and consults with some of the medical staff who will assist in his post operative care next week. We have done quite a lot of preparation for tomorrow. Ted has a very significant needle phobia and together with his child-life therapist we have tried to desensitise Ted to the process through play.

wpid-img_20150203_134535.jpg

How this works tomorrow will set the tone for his Fontan recovery since Fontan (& Warfarin) brings with it many months of needles. We are praying for tomorrow to go as smoothly as possible for Ted, and also for me to control my temper. I’m not good with mindless bureaucracy at the best of times, add my child suffering in to the mix and you have yourself one very tricky customer.

In case anyone is wondering, no we did not choose to go to Westmead for Ted’s care! It was selected by default.  Here in Australia we have three hospitals to choose from when planning to deliver a baby with HLHS. Here in Sydney we have only Westmead and there is another hospital in Melbourne and now another in Brisbane.  If we could go through the private hospital system we would. Believe me we would do anything to avoid being in-patients in the public system, anything to expedite red tape and actually feel like a respected person not a prisoner… Alas we do not have those options when it comes to paediatric cardiology in Australia. It is very different in the US.

Ted’s cough is stable and I am praying that his chest x-ray tomorrow does not reveal any nasties. Unfortunately Tabitha, Monte and I are all very unwell at the moment and now even Grandad has come down with this awful bug. So far we think Ted has escaped the worst of it… Perhaps his lucky escape is due to the loving care he has received from the mum of his special friend and classmate Mitchell. This week Mitchy’s mum has been bringing Teddy some beautiful Chinese broths and congees to keep his cough at bay and we are so grateful to her. She is a real blessing!

wpid-img_20150208_184807.jpgwpid-img_20150210_1156252.jpg.jpeg

Please enter your email address to follow my blog all about Teddy's progress and you will receive notifications of all my new posts by email.

Join 106 other subscribers
Follow teddyhasaspecialheart on WordPress.com

Blog at WordPress.com.

Privacy & Cookies: This site uses cookies. By continuing to use this website, you agree to their use.
To find out more, including how to control cookies, see here: Cookie Policy
  • Subscribe Subscribed
    • teddyhasaspecialheart
    • Join 106 other subscribers
    • Already have a WordPress.com account? Log in now.
    • teddyhasaspecialheart
    • Subscribe Subscribed
    • Sign up
    • Log in
    • Report this content
    • View site in Reader
    • Manage subscriptions
    • Collapse this bar
 

Loading Comments...