Tuesday, September 30, 2008

Sick Kids tomorrow

So we're going tomorrow to Sick Kids. Yale is going to be admitted onto the ward. Dr Golding called me this morning and expalined all the tests they want to do. Well the ones that are already scheduled. He says its more than likely that more will be needed to cover all the bases. As of right now Yale is shceduled to have a sedated echo and CT scan. Dr Golding isn't sure but has a hunch there may be an intervetion required that will mean a cath. He basically explained all the sames things that Liz did yesterday. Here's hoping this is fixable... and dare I say it,.. rather quickly.... although not too quickly as the jack hammers are finally working at the last side of my building repairing the balconies. YAY... so even though this trip is unexpected and unwelcome... as least we can be out of all the racket for a while and if I'm lucky they;ll be done by the time we come home :) Sweet! LOL... always a silver lining to every dark cloud, you just have to look for it. So I'll hopefully post while in the hospital, but it might be intermittant seeing as I'll be on the ward, and its kinda like jail there :) but trust me...when I know something you all will know something!
lets keep praying and sending the most positive vibes out everywhere :)

Monday, September 29, 2008

So we're heading to Sick Kids this week

So I got the call from Liz today after she spoke with Sick Kids. The team there agrees that Yale's function has decreased again, and so they want us to come this week (I'll be getting a call tomorrow with the specifics). Liz says they plan to do an MRI to see if there are any obstructions or causes for the decreased function that they can intervene. If that is not the case than there will be a med change. Hopefully the med change will help because if it doesn't, it looks like we will be heading towards a transplant.
Please everyone we need the prayers again.
Oh and to update on little Abby Knight, the baby I asked for prayers for, she is doing great. She's had a Gtube placed and is expected to go home sometime this week.... YAY! I am so happy for her. Her parents and family are ecstatic! Even though she will soon be back for her next surgery, they are glad she made it through this rough road! Sick Kids do it again!!!

Friday, September 26, 2008

So the freedom is gone :(

So cardiology visit today didn't go so well :( I'd go into all the details and whatnot, but really.... I don't feel like it. The gist of the problem is Yale's leaky valve. Its worse and his right ventricle has enlarged some more. So Yale is being presented on Monday when Dr Golding will be back at Sick Kids. Then we'll know if we have to go for a visit. (most likely) Liz says its most likely they will make a medicine change that can be started here in London. Only we'll have to make weekly visit until it is at a theraputic level...which Liz said could take quite a few weeks. There are other things that could be done.... but we don't want to think about surgery or cath lab or anything...
I just hope this is the course that everyone agrees on and it gets Yale's heart stronger. My biggest fear is it not getting better and them no going through with the Fontan. Luckily the fontan is quite a ways off, but still... Immediately when I got the news I went straight into the what ifs. I didn't ask anything yet because I just don't want to know the worst case scenerio...(but of course I know). Once again I have to put faith in the doctors..they know what they are doing... Its just so disheartening. He seems to be doing so well. I knew right away today looking at his xray that his heart was enlarged. and if I can tell...thats a bad thing :(

On the other hand I am very glad we got our visit home in there while we did. Yale had a great time and we had lots of visits...and lots of normalcy...which is far and few between.

Here are a few pictures of our visit :)
Yale having tea with his Great Aunts Nancy and Louise

A four generations picture!!

Hanging with Great Grandma Hartzke

Relaxing outside on the patio...enjoying the fresh air:)