Hi everyone

Wyatt has had a fairly good couple of days.  He is still slowly weaning down on his vent, and also on his morphine.  His vent settings are now down to a peep of 6, pressure support of 12, and oxygen at 35%.   His morphine went down Saturday night to 10mcg, but he didn't tolerate it.  So they put it back to 12mcg and they were trying to figure out today if they should try to wean it again tonight.  I am not sure on that decision yet. 

Wyatt  was much more fidgity today than ever before.  He was moving his arms and legs alot, and trying really hard to open his eyes.  He could open them, and he did it quite a bit, but could only ever get them open about half way.  He had a bit of a fever, so he had ice on his head again.  His new line (the one line the PICC) is not working properly, they are able to infuse with in, but not draw blood, which they should be able to do, and always have until last night.  So today they were trying to figure out what to do about it.  They put a heavy duty blood thinner in it for a couple hours in case it is a blood clot blocking it, and so now we are just waiting to see if that worked or not.  If that doesn't work I am not too sure what they will do.

Lisa got to give him REAL baths yesterday and today, actually in one of the little blue tub thingys, it took four people, but they did it, and Wyatt enjoyed it very much!  He swished his hands around, and stayed very calm, and had a nice sleep afterwards.  He has always liked his bath, so he must have thought it was great to have one again, and Lisa sure enjoyed giving it to him.  Of course that will get much easier when he is extubated as well.

He has not had to have extra sedation the last couple of days either which is really great.  They have been able to calm him down in other ways.  He is still being suctioned, but not too much, so that is good.  His heart rate is staying pretty steady, and he is doing all his breathing on his own, just having the pressure support.

All in all though, a pretty good day again, in terms of him behaving, and the weaning on the vent still going as planned, so hopefully this week he will get extubated.  That would be so great. 

I will update again soon.  Prayers for extubation this week!

Laura

Hi everyone

Well, after some really rough new on Friday, Saturday was a pretty good day.  Wyatt's CT results from his chest CT came back, and Dr VanArsdell came to tell Lisa the GOOD news, (finally) that the right side looked "much better" and the left side looked "better" (talking about his airway) since they did the lift of his aorta and artery, so this is great news, and the plan now is to just keep weaning him off the vent, and see how he tolerates it, which, so far, so good.  If he can tolerate getting off the vent with his airways the way they are now, then there will be no need for stenting them.  This would be GREAT for Wyatt, so, lots of prayers that this is the case!  If he continues weaning at the rate he is right now, he should be extubated mid-later this week.  This would be so great for him, and of course for Lisa, because it will be much eaiser to hold him then!

Lisa did get to hold him saturday as well, for a good couple of hours, so that was really nice .  He had to be suctioned a couple of times while he was sitting with her, but he settled right back down afterwards.  I think its safe to say he was pretty happy to be snuggling with Mummy.

His food is at 11mls still, and up to 3400 calories.  They are going to go up to 12mls today, and then in 2 days will increase the calories again.  He seems to be tolerating this very well so far, which is also great.  Get some nutrition into him, and get him growing!

His morphine went down to 10 late afternoon yesterday, but they had to put it back up to 12mcg later last night, as Wyatt told them he was not ready to go down yet   Lisa had said earlier that maybe they hsould slow down going down, as he was getting pretty low, and he still has the chest drain in, which is painful and uncomfortable, but they wanted to try, so Wyatt spoke up! 

We were teasing him yesterday, because sometimes he does this little eye fluttering thing when he is sleeping, so it almost looks like he is fake sleeping, so we were asking him if he was, and he gave us a grin, then we asked him if Eric taught him that, and he gave us another grin.  A few minutes later (when Lisa poked him with his Enox needle) he opened his eyes partly, for a few seconds.  But we couldn't get him to do it again.

He had a very stable day in terms of heart rate etc, and his vent is getting down there, as of last night he was down to 35% oxygen, peep of 7, and pressure support of 13. 

Lisa was saying that the Dr also told her that the eye opening thing could be due to the fact that when he opens them, since he is seeing, but not getting the message right, maybe he is just not bothering to open his eyes.  Only time will tell.  We need lots of hopes and prayers that this will correct itself in time, and when he gets off the meds. 

We read lots of stories, listened to some tunes, and had some laughs with him, so it was a good day.  He didn't need any sedation (extra I mean, like ativan or chloral) all day, which is a good record for Wyatt.

One of Wyatts favourite Drs, Damian, is finally back after a leave of 6 months... He was very surprised to see Wyatt still there, and had a talk with him...  We are hoping that Wyatt was just waiting for Damian to come back before he headed back upstairs.  He wanted to make sure one of his favourite Drs would be there to take care of him!  SO, Wyatt, if your listening, DAMIAN IS UP THERE WAITING FOR YOU!!!  GET UP TO 4D SOON!!!!!

Hope for another good day today, more vent weaning, tolerating his increase in food, and to keep trying to open those handsome little eyes.  Hope for more snuggles with Mummy today too.

I will update again soon,

And once again, I will take another moment to remind everyone about the tournament on Saturday June 7th, and to please come on out and help support Wyatt and SickKids.  Please pass the information along to anyone you know who golfs and / or eats dinner!    We still need golfers, and it is going to be a great day!!

Email me at wyatts-warriors@hotmail.com for more info! 

Laura

HI everyone

Well, Lisa finally got some results today, although not any real definitive answers to go with them.  I know everyone is waiting for these, so  I will just get right to it..

Wyatts hearing in his left ear is diminished.   At this moment, we aren't exactly sure how much or how much it will affect him, but it is diminshed.  We do know he responds to sound, so thats a good sign, but they can't really do any more testing to know the extent until he is awake, and out of CCU in a quieter room. 

Wyatts vision is distorted.  He is seeing, and his eyes are trying to send the message to his brain, and his brain is eventually getting the message, but not the way it should be.  It is a distorted message when he gets it, and does not get it as quickly as it should.  It is taking a long time for the signals to get where they should.

Wyatt has fluid in his head, between his brain and his scalp.  This is likely to due lack of oxygen to the brain at one time (or several times)   There is more there than what should be.

Wyatts brain is shrinking.  This is in comparison to the last CT a few weeks ago.  This again is due likely to the lack of oxygen, although it can also be due to the fact that it is not being stimulated at all.

What does all this mean??  Good question.  There are no solid answers.  A lot of it is wait and see.  They say some of these things can be caused by the medications he is on, that he is still on alot considering.  If you or I as adults were on the meds he is on, we'd be knocked out...  They will not be able to REALLY tell if the damage is from actual damage, or an effect of the drugs, until he is off all sedative drugs for a week straight... that means no morphine, no ativan, no chloral, no nothing, for an entire week.... he is no where near that right now...  This will mean alot of waiting for answers.  Once he is off the drugs for the week, they would do another test again to see how that one showed things.  Even once that is done, there is no way to know really the extent of the damage, or to know if it could get better.

Sometimes, the brain can find other ways to do the job of the part that is not working properly, it can re route for lack of a better word, to a different area, and still get the same job done... this is a possibility, especially since Wyatt is so young, but of course there are no guarantees, and there is no way to know if this would happen or not.  Alternatively, the damage could be there, but could be very minimal, or of course, the worst cased scenario, of bad damage, that doesn't correct in any way.

Obviously the best thing we can hope for right now is that it is the meds doing this, and that when he gets off them, things start to turn around.  They will not be weaning him any faster than they are, as he is still in considerable pain of course, and needing his pain medication.  So it will be quite a while before we actually get to know what is going on.   We cannot really help in any way, as he cannot really be stimulated right now at all, in terms of using his brain, or even his body much still, since he is still so sedated.

Wyatt also had a chest CT today to take a look at the airway, and compare it to before they lifted the aorta, and the CT immediately after they did that, and see what the differences are.  Lisa did not get the results of this yet, and so probably won't now until Tuesday.

Wyatt was really grouchy and irritated today, probably due to all the testing and being fiddled around with.

His Dr talked to Lisa about weaning the vent today as well, and he is still tolerating that well so far, so they will continue with that, and if that continues on the same track that he is on right now, he would hopefully be extubated in a bout 5 days.  Lets hope he keeps tolerating this.

That is all I know for now.  I will be down at the hospital for the day tomorrow, so I will update again when I get home, and maybe have a little more details.  Sorry, but there isn't really way a good or nice way to write all this, so I just put it out there.

Lets just hope and pray that Wyatt will continue to be Wyatt, our brave, beautiful, strong little man, who loves to do everything that everyone says he shouldn't, and that he comes off all his meds and shows us all what he is made of again.  Such a sweet smart strong little man that he is. 

WE LOVE YOU WYATT

Laura

Hi everyone

Well, we are still waiting for much of the results....    It has been a long week of waiting that is for sure.

Wyatt got his drain in, and that went well, he drained 160mls right away, and has still been draining since then, but not nearly as much.  They cultured the stuff from the drain and it was not positive for kyle, and they are still waiting to see if anything grows bacteria wise from the drain fluid.  They also recultured his lungs and the antibiotics that he is on for the pneumonia are no longer good for his pneumonia, so they have to change the antibiotics today.

The CT scan showed that there is a lot of white matter in his brain, but they aren't sure if it has been there all along, or if its new.  White matter are spots where the brain has not gotten enough oxygen.   It also shows that there is more fluid around it than there should be, again they are not sure if its old or not.  It also shows that his brain is looking smaller than they would expect as well, and again, they are not sure if that is the way it has always been, or if these things are all new....   His head is growing at a normal rate.  So, they did another test today, something called an evoke potentials test.. this is kind of like and EEG, but better, in that it is more detailed.  They attached a whole bunch of lead type things all over his head, sedated him more (we don't really understand this, but they say more sedated is better) and they do all kinds of things to send messages to his brain, like touch his feet, his face etc, and read the brain waves.  This should help them to be able to determine damage.  Lisa should get the results today, and will let me know as soon as she does.  If there is damage there, it will be hard to say whether it is old or new, and hard to say how bad the damage is.  It will also be impossible to say whether or not he could recover from it..... meaning sometimes, people have brain damage, and there bodies and brains find other ways to compensate for it, and find other ways to make everything work, other times the damage can repair, while other times, of course, nothing gets better either way.  They really won't be able to tell what the outcome would be.  So we have to hope and pray today that all looks well, and that Wyatt not waking up is just Wyatt being Wyatt and doing things his own way. 

Other than that, they have been working on increasing his food a little at a time, he is at 12mls now, and 3200 calories.  We need him to gain some weight and strength.   He keeps trying to open his eyes tiny little bits, but can't get them all the way open, and seems to have a harder time with his right eye for some reason.  Lisa asked if this could be due to a stroke, but they said that would have affected the whole right side of his face, and he is moving his mouth like crazy, so they don't think thats what it is.   He has a fever today as well, so they are trying to get that down.  He has been very grouchy today. 

Dr VanArsdell came in yesterday and spoke with Lisa in regards to Wyatts heart, and the airway situation.  He said that the only way that they could "fix" it, would be to undo everything he just did in his heart... which obviously, he is not going to do, as Wyatt needed that, and so it obviously would be no help to him at all.  He could take everything out, and put smaller stuff in, but then he would be right back in there in two months having to put bigger stuff in again, and its just way too much for his heart to handle.  So, at this point, these are the options... wait it out, keep trying to wean the vent, and see if he tolerates the airway being partly squished, and hope that in time, he will grow, and his airway will have more room (he would need to be able to be off the vent and tolerating it though) or else, if he is not tolerating being weaned off the vent, they would have to stent the airway.  This is an absolute last resort, as Dr V does not want to do this, as it is an ongoing thing for the rest of his life, they can never take it out, it would have to repeatedly be re stented, and can cause damage to the vocal cords etc.  We have to hope he can tolerate being weaned off the vent, and get growing.  If  this were to be done, it would be the Ear Nose Throat DRs doing it.   They are going to come and see Wyatt today.  They may want to do another bronch to see things for themselves. 

Other than that, his peep is at 8, his oxygen at 40%, and he is breathing on his own again.

I will update again as soon as Lisa calls me with results.

Lots of prayers for good results.

Laura

Hi everyone

Well, after a nice stable couple of days, and a nice Mothers Day for Lisa, Wyatt has decided to get back to his funny business. 

On Sunday, they had decided to do a CT Scan of his head, as he still is not waking up, and they feel he should be by now, as he is down to 14mcg of morphine.  They did this scan on Monday, and we are still waiting for results, but hopefully maybe we'll get them today, as they said it would take a couple of days.  They will be looking for any type of damamge, or evidence of stroke etc.    Obviously we are hoping and praying that there is nothing there, and that he is just weak still.  Though one would think if he is able to kick his feet and hands, that he could open his eyes.  We will soon see I guess.

His food is up to 11mls, and they are leaving it there for now, as they are working on increasing the calories instead of the volume.  He was up to 3000 Monday, and today will go up to 3200.    His morphine, as I said above, is now at 14mcg.  They were supposed to wean it down yesterday, but due to what needs to be done today, they left it alone.  They changed his ativan to diazapam for sedation/calming.    They rtook some lung cultures on Tuesday, one from each lung, when they did another bronchoscope.    During the bronchoscope, they discovered that his airway is again very squished, and that there is a large fluid build up in his chest.   His settings on the vent have all had to be increased, he is up to 65% oxygen, and his peep and pressure support are up higher than they have been in quite a while.  We are unsure at this point if it is due to the fluid build up in the chest, the  squished airway, a combination of both, or if the fluid is whats squishing the airway, or what iexactly is going on we don't know.  So, they will put this chest drain in today, drain the fluid, test it for Kyle again, and see what happens.  If his sats improve, and he is able to wean back off the vent to where he was, then the assumption would be that the fluid was causing all the problems, if not, then they will have to look further at his chest, with a CT scan of it, and decide what to do... do they need to go back to the OR, or to the Cath lab, or what.. but it will take a couple of days to figure that out.

Neurlogy came down today to evaluate Wyatt (not sure how you can evaluate a sedated person, but apparently you must be able to ;)  ) and so we are waiting to hear what they had to say as well as we are still waiting for the CT Scan results.

So, prayers for Wyatt today that the fluid build up is whats causing the problems, and that whatever caused the fluid build up is easily helped, and that he can get back to where he was on the weekend, and doing well.  Hope and pray for good news on the CT scan as well.

I will update as soon as we hear some news on either.

I am going to take a second again and remind everyone of the upcoming golf tournament.  It is coming up fast, the last 5 months of planning sure have flown by for me anyways ;)  But, we still need some golfers, so, if you know anyone out there at all who is a golfer, please pass along my contact info to them, and ask them to come out and support a great cause.  The proceeds will be distributed between Wyatt and the Cardiology Department at The Hospital for Sick Children, through the SickKids Foundation.  We need to raise awareness of Congenital Heart Defects, and make a difference in these childrens lives.  It promises to be a lot of fun, we will have a lot of different things going on through the day, so please come out and show Wyatt and SickKids your support.  Anyone is welcome.

Thanks everyone,

Laura

OH, there are new pics in the post surgery file, about 15 of them, from Mothers Day, when Lisa got to hold him, and him waiting for her to hold him.

HI everyone, Happy Mothers Day!

Wyatt has had a couple of better days, I am happy to say.  He is really not waking up still, but has been slightly more stable in terms of his heart rate, he is still going wacky, but not as bad as he was....  his lungs are looking a little better, and he is needing suctioning slightly less frequently.    For a couple of days there, he was needing it pretty well every hour, at least, so thank goodness that has settled down.  

Friday was the last day that seemed to be really out of control wacky, and he had us pretty worried... his heart rate was all over, quite badly, and he was having to be suctioned almost constantly.  He sats were so bad, they got down as low as 8, and it would take him quite a while to get them back up... then, almost overnight, he turned around for the better, thank god.
He has had visits most days, on Friday was a busy day, Granny Lyn, Maama, Granny Cels, and Grandpa all came.  Saturday was a quiet day, and today myself, Eric, Grandpa and Grandma all went.
Wyatt moved rooms, along with his new friend Parker, just to a different room in CCU.  No particular reason why, but it is a change of scenery!                 The Drs decided that they would work on weaning the different settings of his ventilator, every twelve hours.  So far, that has been going well.  He is at 40% oxygen, peep of 6, and pressure above peep of 16.  They are still weaning his morphine every 48 hours, so today he went down to 18mcg.  His food is up to 10mls/hr, and tomorrow they are going to increase his calories as well.  His sats have been sitting well, and his heart rate pretty good, though he is still pacing sometimes.
The great news for today was that Lisa got to hold Wyatt!  The nurses took him out of the bed, and weighed him first, and then handed him to Lisa.  She got to have a snuggle with him for aobut an hour and a half.   His weight was 6.66kg, so up a bit from before surgery, but he is also positive in fluid, and had all his wires and tubes on him too, so in reality he is probably about the same weight.    We had a nice little visit, then Grandpa and Grandma came for a visit as well.

The BIG surprise for the day is WYATT NOW HAS TWO TEETH!!!!!!!!!!!!  When Lisa was holding him, she noticed them, the two bottom, front and center!!!  YAY WYATT!!!!!!     This is VERY exciting news!!  We have been wondering when he would get those little teeth!   

The Dr came in this afternoon, and they will be doing a CT Scan tomorrow, as they are concerned that Wyatt is still not waking up.  Now, they had done one a few weeks ago, and it was fine, but they want to rule out that anything could have happened since then, such as a stroke etc.  If all looks fine again, then they will assume that he is just too weak still to wake up, and then they would concentrate alot on more nutrition as well as much more intensive physiotherapy.

That is all we know for now, all in all, a pretty good couple of days, after Friday that is!  Hopefully he will continue to tolerate the weaning of the ventilator, and then maybe he could get off of it this week!  He is still doing all his breathing himself, so that is excellent!   I will update again when we get CT Scan results.

What a stellar Mothers Day for Lisa, a cuddle, AND to find two teeth... hope for more good news in the days to come,

Laura

HI everyone

So, maybe I shouldn't have said out loud, that Wyatt might have been behaving... we all know he likes to do the opposite of what anyone says, or what he is told... 
Wyatts pneumonia is worse, since yesterday, quite a bit worse actually.  They had recultured him, and it grew pretty fast.  They put him back on two different antibiotics, but are still waiting for the sensitivity test to come back, which is what will tell them what antibiotics it is responding to.. well, they should've been back today, but they aren't yet.. which probably means that they are having a hard time getting an antibiotic that is working.  In the meantime, all the hard work he had been doing on getting his ventialtor settings down, have kind of gone by the wayside... he is back up on his oxygen and peep and support....  He is getting suctioned ALOT still, and they are having blood in the secretions most times.  They aren't sure if this is due to them irritating his lungs by suctioning them so much, or if it is edema, or what it is.  He is very irritated still, and is down to 22mcg of morphine now.  they are going down on that every 48 hours now, so that will go down again tomorrow.   His food willl go iup to 8mls tonight, and he is still tolerating that ok.  He hasn't opened his eyes again like he did the other day, but is fluttering them still, and opening them a little slit for a few seconds. 
Lisa said he is extremely tired, which I am sure is a combination of things.  I know pneumonia in itself is exhausting, so I can just imagine on top of everything else, how tiring that would be.

Lisa had thought they might do a bronchoscope today, to get a better look in his lungs, and clean them out, but for whatever reason, they decided not to. 
His heart rate is still all wacky, not quite as much as it was, but definately still is.

He lost his art line today.  They tried to save it, but couldn't, so, now he just has to behave, or he will be needing to get poked again for a new one.  If he is behaving fairly well, they won't put a new one in (this is used to measure his BP very accurately) as they can jsut use the cuff, which is less accurate, but not so bad if he is generally doing alright, but if hes not, he will need a new art line, so lets hope he doesn't need it!

That is about all for tonight, I will update again soon, hopefully by tomorrow they will have figured out what anitbiotics he needs, and get him on them.   Hopefully he can have a nice restful peaceful weekend.

Laura

HI everyone...

Wyatt has had a pretty decent couple days, and we MIGHT say, he MIGHT be behaving....

His heart rate is still very much all over the place, from in the high 200's, to below 100... they increased his heart rate regulating meds a bit, but it is still doing that. 

Monday, I was down to see them, and he had a function echo.  The echo was ok, his function was not better, but it wasn't worse either.  His pressures were the same (so still too high).  Colin and I went down for a visit, but it wasn't the greatest visit, as he spent most of the visit getting suctioned.  At one point he was getting suctioned for an hour straight!  He had so much gunk in there that it seemed that everytime they finished, it was time to start again.  He was blowing bubbles out his nose and mouth.  He was getting very mad at the whole ordeal, and his heart rate was pretty high, and his sats were low.  They had to turn all the vent settings up to try to get him back to where he should be.  They got him up to 5mls of food per hour, and his morphine down to 24mcg.  He appparently spent much of the overnight being suctioned as well.

Yesterday, Lisa was having a  chat with one of his Drs about how she was conerned that Wyatt was still not opening his eyes.  The Dr was saying that it would still be hard to tell anything as he was still on quite a bit of morphine (though not in terms of what he has been on) and that it also can take a while for everything to clear out of his system.  He said there was a possibility that he could have had a stroke, and they didn't know, but still that even if that had happened, it wouldn't be likely that he couldn't open his eyes because of it.... Well, Mr Wyatt must have been listening,  cause as soon as that Dr walked out of the room, Wyatt opened his eyes right up, and stared at Lisa for a good 5 minutes!!!!   Lisa said he looked dopey, but he was watching her, and following her when she moved, so that is FANTASTIC!!!!!  He didn't really open them up again, so that must have taken quiet a bit of energy!  They turned his RESP rate down to 5, and also turned the support down a bit, and his oxygen down to 35%.  Granny Cels went for a visit during the day, and then Grandpa went down in the evening.  He was still needing lots of suctioning, and he would get very agitated again when he was needing it.  All those secretions really seem to bother him too, even before the suctioning.  He also had a fever last night, so he had ice packs all over him. His blood gases have been good.  Due to all the secretions, they did another culture, to see if he still has an infection, or its gotten worse, or another one etc.  They also restarted his antibiotics.  They are still upping his food every 24 hours, so he should be to 6mls per hour now, and they have gone from decreasing his morphine every 24 hours, to every 48 hours, as he is getting down pretty low now, and is quite aggravated.    So today will be a decreasing day for the morphine, later on this afternoon.  He is at 24mcg now, I am not sure how much they will go down.

That is about all I know for now, lets hope for another day of positive steps, and that there is no new or worse infections there.  Lets hope for more eye opening, and less secretions.  Lets hope the morphine weaning goes well.

I will update again soon

Laura