Thursday, 11 August 2011

DAY THREE....

What a day yesterday.  Brody was in excrusiating pain yesterday. It was the hardest thing to be around as there is absolutely nothing you can do for him other than sit there rub his head and tell him everything will be ok (when in the back of your head you can only imagine what he is going through).  We can't even imagine having to go through this again but at least we have a few years before we have to do so.

With this procedure he gets "headaches" which they compare to major migraines.  Needless to say he had those and was not happy yesterday.  We could not console him in anyway..ie even holding him upset him.  So we talked to the doctors and they put him back on his "happy juice" pain killers and he was a much happier fella.  Also, there is a side effect to this operation where the lymph nodes may leak fat as the body is trying to get used to the new blood flow and they don't know what to do.  So he got that side effect they have changed him to Monogen formula, which is low fat, to help drain all the fat from his lungs and get his body working.  He only needs to be on it for a few weeks to clear his system then we can go back to normal formula.  Last night,  he kept fussing and mussing with gas pains so they had to give him a glicerine tip to relieve his gas.  Once they did this he has a big "fart fest" and poop and slept from 10 - 5 this morning.  We were so happy to hear that...

He will be transferred up to 3M today (the cardiac ward).  It will be quieter and hopefully he can get some rest.  We are a bit scared as we do not know what he will be like without his meds but we can't stay in the PICU forever (even though we would love to).

Once we get to our new room we will post a picture as it is amazing how far he has come from day one as the tubes keep disappearing as the days go on.

Here is the picture as promised...only the drain tubes are left :)

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