Friday, December 14, 2012

Port Pictures

The Port was installed about 2 1/2 years ago. it is inserted just below the skin and attached to the top of the rib cage. A tube runs up and into the jugular vein.
Every time Luke went to get chemo or an EUA he was accessed which means the tap into the port so they don't need to continue poking him. kinda like an IV in your hand.

Chemo is injected into this as for young children the type of treatment Luke received for chemo was a really strong dose and would have burned through normal veins.

when just going for an EUA they access the port and draw blood and anything else they need to do.

when not in use the resevoir is filled with a drug called heparin which is a blood thinner and makes sure no clots form in the port.

Pre-op you can see the port under the skin
A port can last up to 10 years or that's what we were told at least.
Actual Port that was removed

Thursday, December 13, 2012

Port removal

Well 12/12/12 was the date and we had Luke's port removed.

We weren't to sure how things would go as Luke had a bit of a cough. But he was cleared by the doctors to go ahead with the removal. So everything went fine Luke got a dose of  midazolam to help calm his nerves. He's been having a tough time going in by himself so we gave him a little helper to "relax" him.

So surgery goes fine port is removed and into recovery he goes. BUT low and behold there is something wrong. His oxygen stats are low around 85 when they should be around 97-99%

So on oxygen he goes and the doctors start to hear "crackles" (medical terminology)
And the doctors are nervous. So they tell us we are staying to keep an eye on things.

Then begins the barrage if doctors. Ophthalmology who is the primary doctors but thy don't know nything about the lungs or the body just the eyes so they defer to pediatrics but these guys have no idea what's going on. BUT
While we're still in post op we're the responsibility of anesthesiologist BUT were also under the care of the IGT team (the guys who removed the port)

So thats 4 different departments.

And everyone has a stake in the case. It makes sense that peds is in charge cause he is having some lung issues and what do these other guys know about lungs.

Doctors decide Luke has a mild case of pneumonia. But no one is sure how to proceed and no one is telling us when we are leaving.

During the night Luke was having a horrible time sleeping because of his cough. I ask the nurse can you give him something and she tells me no we don't have cough syrup.(your a hospital, and you can't give him something to sleep or stop coughing.) so I have to go down to Starbucks for some honey and warm water and 10 minutes after he drinks it BAM he's out daddy to the rescue

In the morning ophthalmology comes in and tells us we can go home.
IGT comes is says hi
Peds comes in and says hey we're gonna take a look then I'm gonna go get another dr so you can!
Explain everything again.

Other doctor comes in says ya were gonna do an X-ray I say umm no your not he doesn't need one dr
says well we need to rule out some bull%^#%% EXSCUSE about bout blood clots in his leg which when I tell Monica she looses it cause she can't think why he'd have a clot in the first place. Turns out this guy is just a douche who wants an X-ray.

Next door I notice dr Chan. (Oh oh someones in trouble) I catch her and get her help
To get us out and sure enough an hour later we're leaving. Also finding out that the dr in emerg
are running tests that they shouldnt be (oh oh)

Needless to say we're home. We're rested and glad to be rid of the port.

Friday, July 13, 2012

July friday the 13th 2012

I guess i should keep this more up to date and stop writing on the "unlucky" days.

What has happened in the last 6 months?

Luke got a prosthetic eye and with a couple adjustments we think its starting to fit right. Luckily it hasn't fallen out yet and there have been 0 issues with it.

Our last visit to the hospital was a trip to the exam room rather then the surgery floor. They tried (somewhat successfully) to look  in Luke's eye while he was awake. Next time we go it will be another EUA.

Ben was born 9lbs 13 oz. Luke now has a little brother.
We took Ben in to get checked out to see if he had any signs of RB. The doctor proceeded to tell us the chances of him having it were 1/50000 i said that's nice that's what they said about Luke so just check the eye.

Then there was one point of the check up on Ben where they had to put those things in his eyes to keep his eye lids open. The doctor seemed to be concerned that Luke shouldn't be in the room. Personally i thought he should be there to help console his little brother when it was done and that somehow it might help him with his own journey. When the doctor told me we should send Luke out of the room because it might upset him. (Again with a snide comment) Doc he's been through chemo pokes and prodes galore AND had his eye removed i think this would be a cake walk. So the doctor went and did it.

Luke was right in there wanted to watch and everything. When it was all over he went over to Ben and said it's OK buddy (very cute)

SO it seems that Ben is free and clear NO RB. woohooo

For me it seems that this will add another one of those tough questions. From why me? to why only me?
Just another self reflecting life question will will need to be able to answer when the time comes. Oh it will come as it always does whether the child realises it or not inevitably it will come out at some point either during a fight or in some what does it all mean god question on some Sunday night after dinner.

I'm getting excited about the abundance of questions that Luke and Ben will have for me as they get older about everything.

Other then that it's been a pretty quite 6 months.

Friday, January 13, 2012

Start of a new year!

Greetings all

Well it's been almost 2 months since Luke had his left eye removed and we went for our EUA.
Great news. Right eye looks great no problems at all. Cancer is there but doesn't seem to be growing. Our next visit is 8-10 weeks!!!

Prosthetic Eye.

While in for our EUA Luke had his eye measured for his permanent prosthetic. We go back in a week to get it inserted in. We found that with his temporary eye the only problem we had was excess build up of sleep in his eye and not a lot of eye movement.

The Doctor told us that there will be a lot less build up and more movement as the eye heals.

will keep you updated as thing progress