Hi everyone,

I just wanted to do a quick update and let you know where we are at right now....

The plan was to do the trach this week.. either today, or Thursday.. but now Wyatt has a blood infection, and they need that to clear before they will do it.  We aren't quite understanding why, since they did open heart surgery with a blood infection, however, they won't do it, so that is that, we need it to clear up.  He is on the right antibiotics now, so we just need them to kick in and start working.  He has pseudonomis again, and that is what is in his blood as well.  It is coming from his PICC line, and we are not sure yet if it is colonized to the line, or not.  They have done a culture again from the line, as well as a poke elsewhere to try to determine that.  The Drs want to pull the PICC line out, but there are a couple of concerns with that.  First of all, they had SUCH a hard time even getting that line, that they told Lisa when they did that one, that they would not be able to get another one in anywhere else....  If that still stands, that is a big problem, as Wyatt needs his line... his TPN and Lipids run through there (they are too concentrated for an IV line), as well as his heart arrythmia meds (which burn him if they go through IV), among other things.  He does not keep IV's very well, and even they are hard to get into him... So, they did an ultrasound yesterday of his whole body, to try to determine if any of the old blood clots are gone, opening up any new spaces for a line again... If not, they have to decide what to do... because if it is the line causing the infection, they won't get rid of the infection without taking out the line, yet he needs a line... we will see what happens over the next couple of days.  The other concern is the blod clot that is at the end of it.  There hope is that it either A comes out with the line, or B is fastened to the wall inside now, and won't come lose and move.  This is concerning because it sits right above his heart.  They do seem to feel though, that it has been there long enough that it should be attached to the vessell.   He also has three infections in his lungs right now, pseudonomis, enterroccoccus, and another one I can't even begin to spell..  They are all being treated now.

His feeds have been going well, knock on wood.. he is going up to 11mls today, and is at 3300 calories.. they are interchanging increasing volume and increasing calories..   They have been weaning his medaz (sedative) and he was going through some nasty withdrawal for a couple days there, along with the infection, he was pretty miserable.  But today seems to be a better day, so hopefully he is over that part, and they can get back to the weaning, though I don't think it will be tonight.  With the weaning, he has been more awake, enjoying his baths, and watching toys and baby einstein.  Also, being more awake, he does not like being intubated of course, so he has self extubated a couple of times this week, little stinker.    Luckily, they have been able to reintubate both times without too much trouble.  He is just doing his job by keeping his nurses and Drs on there toes!

Lisa has met with the trach nurse, as well as the palliative care team this past week.  The trach nurse was just to give her more information, but she really didn't get any more than she already knew.. and the palliative care team was a requirement, so that Lisa was aware of all that they offer.. and as it turns out, they were not only about end of life care, but also about helping them out for long term care... meaning help get Lisa and Wyatt set up with the rehabilitation services, nursing services etc that they will need when they head home, I guessi n ocnjunction with the social workers etc.  So, the meeting wasn't as bad as Lisa was thinking it would be.  She also got to meet today, with a mum and a little boy who has a trach, just a little bit older than Wyatt, so she got a little more practical information from her as to what it is like living with one, for both her, and her little boy.   Some of it was encouraging, like the ability for the little boy to move around easier, and get his development back on track, and other parts were more discouraging, like being told it takes three people to bath him... so I think it was good for Lisa to meet with them, and Lisa also has friends who have been through it who can help with information for her.

So, please pray that Wyatts infections get under control, and he can get his trach, sooner rather than later.  The sooner he gets it, the sooner he can get on track rehabilitation wise, and the sooner we get more answers as to what is going on. 
Please also pray for our friends Sofia, and her parents Mark and Courtney, as Sofia has been placed back on the transplant list, and is now waiting for her heart.  Just over a week ago, they had been preparing her to go home, so things have been turned upside down for them again.   Please pray she gets her heart soon, and that it goes smoothly for her.                                   Our friend Emma is still doing well, so thank you for the prayers for her as well.

I will update again when we know more about the line and what they are going to do, as well as when we hear when the trach will be now.  Hopefully the ultrasound has shown somewhere else that he can get a line, and things can move ahead soon.   We would really love to get him his trach, het him to Bloorview, and get him HOME for Christmas this year.. Heck we are still waiting for that 1st Birthday Party Wyatt!!!

Reminder to everyone about the upcoming Casino Rama Bus trip, it is Saturday October 4th.. Leaving Whitby at 2:30pm, anyone 19 or over is welcome.  Please contact me for more information at wyatts-warriors@hotmail.com 

Laura