Hi everyone

Sorry I have been a little slow at getting back on here, It has just been a crazy week for the golf tournament, I have been out everynight working on it, except the night I was at the hospital, which I got home too late.. SORRY!

So, I had a really nice visit with Wyatt and Lisa, and he was behaving fairly well, though his sats were sitting really low.  He was definately more aware, and was getting really ticked off at his nurse, who, poor guy, had to constantly keep suctioning him, as he had spit bubbles coming out his nose and mouth over and over again.  Wyatt was not impressed about the repeated suctions!  So, during all that time, his sats were mostly sitting in the 50's (haven't been there in a while!)  Lisa got to give him a little bath again, wash his hair, wipe down his body a little bit, but he wasn't overly impressed by this either.   
Over that night, he had a bit of a rough night, and needed ativan quite a bit to calm him down, and also was having a rough time with his heart rate and BP dropping too low.  HIs pacemaker was set to kick on at 78, and it was pacing him constantly.  His blood pressure was sitting in the 30's for a while.   
It is getting a bit harder too, because he is more aware of what is going on, but still unable to really move much, or open his eyes etc, it is hard to watch him like that, and seems to get harder as he gets older.  We can see that he is crying, there are tears coming out of his eyes, and he is flinging his arms and legs, but you can't hear a thing.  That is hard to watch, and hard to not be able to pick him up and cuddle him when he is feeling that way.  His little feet and arms are so bruised from all the lines.

Yesterday they wound up re adjusting the pacemaker to be on at 120, and it was on constantly pacing him.  They got the vent settings turned down a bit, so that his peep got down to 7, and his oxygen down to 40%.    His day was realtively quiet, other than this pacing issue.

Last night, he apparently fussed and whined and cried all night, but the nurse did not give him any ativan (Lisa was not impressed with this, as she had discussed this with her right before she went to bed, yet she did not give him any anyways, and let him be upset all night)  So, this morning, he wound up up a bit on the oxygen again, to 45%, and upped his peep again to 9.  

They lost his CVL line today too now, so that is pretty much all lines have been lost.  They tried to get IV's in, but weren't real successful.  They got one IV in his one foot, but he just had one there, so who knows how long it will last.  He has not been getting any food or meds all day because of this.  So he is in IGT right now, and they are trying to find somewhere they can get a line in.  They had to re muscle relax him of course, and first tried to get one in the other side of his neck, but had no luck with that.   They will put one in where ever they can in IGT, jsut be hopeful they can get one in SOMEWHERE.  They will still have to work out how they are going to get everything into him, as obviously all the stuff he was getting in so many lines before, cannot all go into one line, its just too much, not to mention, some of the meds are not compatible to be run with each other.  So this is a real dilemma.          They wanted to try to wean down the vent again today, but will see when he comes out of IGT how he is doing.  Also, they have been weaning down the morphine a bit each day, and have him down to 48mcg now.  They are still not feeding him, as each time they try, it just sits there too long, and takes way too long to digest.  Hopefully as the morphine decreases, his metabolism / digestion will speed up.

That is about all I know for now.  We have to hope he gets a line in now, and that it lasts.  I will update again with how IGT went later on, but it will definately be later on tonight, not early.

Laura

HI everyone

Well, I am pretty happy to say that in relative terms, it has been a pretty quiet day and a half.  Wyatt behaved himself quite nicely for the rest of his birthday... nothing too major happened, except that he lost one of his IV's.  (A typical Wyatt thing)  Yesterday was fairly quiet as well, again, in relative terms, this IS Wyatt we are talking about here!!   But really, he did pretty well, he still had ups and downs with his heart rate, and downs with his BP, but nothing toooooo major, so that is good.  They are continuing to wean him daily off his morphine, just little bits at a time....  But to give you some sort of idea, this is what Derek told Lisa last night...  If we (meaning us as adults) were to have stomache surgery, we would get 10mcgs of morphine...  Wyatt was getting 80!!!!!   SO, that explains a lot of why he is so dopey still, and not waking up or moving around too much... though he is making little bits of more movements, and fluttering his eyes a bit.... he is down to 54mcg of morphine now...  

He lost his other IV as well yesterday, so now the pharmacist is trying to figure out if she can put his heart regulating meds in one of the other lines... the meds have to be compatible... also, he is starting to lose his arterial line.. which is what measures his BP, and they know they won't get another one in.. they already tried in the other arm.. so they will just have to use the cuff.. which isn't quite as accurate, but theres not much else they can do about it... 

Dr VanArdsell and Dr Russell spoke yesterday, and here is the plan they have come up with.....  They will wait for the pneumonia to be gone, as having pneumonia will definately increase his pressures... so they should definately come down at least somewhat.. the question will be if they come down enough, or to a level that he tolerates....  If they don't, then they would go back in again, through surgery, not the cath lab, and re open a part of his VSD.  They don't want to do it through the cath lab, because that would be kind of poking blindly, and they want to get it where the patch is now on the old hole, as opposed to making a new one.  If they do come down enough, and he is tolerating, then they don't do anything except monitor him.  Lets hope for that!  We really don't want him to have to have another surgery right now!

They keep trying to feed him little bits, but he is digesting super slow, so thats not going so well.  Hopefully as the morphine goes down, his metabolism/digestion will speed up, and he can start eating some more.  He really needs to start puttin some meat on that body!

Lisa has been kicked out a lot the last couple days due to other kids in the room not behaving so well.   Yesterday, Granny Lyn, Granny Cels, and Grandpa and Grandma Celsie were all down to visit throughout the day/evening at all different times, so they had company most of the day again.  I am going down this evening.

Thank you everyone for all the birthday wishes, hopefully soon we will get to have a real party for him!

I will update again after my visit, and hopefully will have some new pictures to add for you all as well.

Laura

Hello there everyone, on this very special day, Wyatts very 1st Birthday!!

Wyatt was a very busy boy today, with many visitors!  Right from the morning till night, Mr Wyatt and Lisa had company.  Wyatt got so many nice cards, and they are all posted up on the wall beside his bed.    He even got some special home made cards and pictures... What a lucky boy!  He got a couple of gifts too, from his friends in CCU and on 4D, and from his friend Samir, and one of his favourite nurses, Lauren.   So, what he got was a REALLY cute set, that says Birthday Boy on it, and had a hat and bib and shirt etc, and he got a glow worm, an ocean wonders throwing in fish game thingy (like my description LOL), a stuffed dog, a squishy tweetie throw in birdies thingy, and a mirror with dangly toys.   
His visitors were, Mamma and Babboo and Colin, Auntie Laura, Uncle John, Sean, Eric & Gabriella, (the kids weren't allowed in to see him though, which they are still not impressed about of course), Great Aunt Lisa and Uncle D'Arcy, Jordan and Alyssa, and Grandpa and Grandma Celsie.  Some of Wyatts nurses from 4D came down to see him through the night to wish him a Happy Birthday too.  He was a very popular boy today, and as I can see from both of his sites, he has also had a lot of Birthday wishes here too, from all over the place!  He is one lucky and very loved little man.

He had a fairly decent night last night, with his usual little monkey business of his heart rate, but nothing else other than that.  Today, with all his company, he had to put on little shows of course, for us to see his tricks....  He had a few blood pressure drops, so they changed his pacemaker a little bit, and set it a bit lower, and that seemed to do the trick.  They flipped him back over to his back, and after they did that, his sats were pretty crappy.  So, he had been on 40% oxygen, and satting great, they wound up getting him back up to 55% and he still wasn't satting great then.   He was suctioned a few times of course, and while he was getting suctioned, he was getting a bit ticked off, so while we don't want him to be mad, it is nice to see a little action!  He was flinging his arms about when they did it, like he was trying to push them away.  He didn't seem to be too interested in the fact that it was his birthday, or that he had gotten all these cards or visitors.  They were weaning him again a bit today off the morphine.  He had a chest x ray after they flipped him over again, but I am not sure of the results of that yet.

Tomorrow Dr Russell is supposed to talk to Dr VanArdsell about what to do about his high pressures.  I think they have to wait regardless to see if it is because of the pneumonia (unless he can no longer tolerate them) and then see if he tolerates them with the pneumonia gone, or if they need to go back in and do something.

So, that is all I know for tonight.  Happy Birthday little man, we love you so much.  You are such a fighter, and such a brave strong boy.  You are my hero, and an inspiration to all of us.  It has been one hell of a year Wyatt, for you, and for all of us who love you.  I hope that you have a wonderful second year, one with a little more rest and peacefulness, and LOTS more time at home with Mummy and your family.  And of course, we are all waiting for that big 1st Birthday party, Baby Einstein style.  Love you lots baby boy.

I will update again tomorrow.

Laura

HAPPY BIRTHDAY TO YOU, HAPPY BIRTHDAY TO YOU, HAPPY BIRTHDAY DEAR WYATT, HAPPY BIRTHDAY TO YOU!!  WE LOVE YOU BABY!!!!

I don't have the update yet for overnight, but will just let you know about his day yesterday.  He was flipped back over to his belly again, in order to try to relieve the pressure off his lungs again a bit more. The plan was to leave him on the belly till today, then flip him back over to his back again.  There is still a lot of secretions in his lungs, so hopefully this is going to help.  He is starting to get mad, and kick his feet when he is suctioned, so that is good (well, not good he is mad, but good he is showing more action).  HIs blood pressure had another big drop, but then after a few minutes, went back up again.  His heart rate is also still wonky, and apparently IS still getting up over 200... yesterday as high as 260... he still has the pacemaker on, preventing it from going lower than 100...  When it gets too high, they are giving him a little extra dose of the medicine to regulate his heartrate. 

His pressures in his heart are getting higher again.... when they closed him up, (the original surgery on April 10th) after closing his holes, I think you will all remember, they left him open for a couple hours to see what his pressures would do, and to determine whether they could leave the VSD closed, and the ASD mostly closed... his pressures were at 60... now they are at 85..  SO, Dr Russell is going to chat with Dr VanArdsell and see what his plan is.  It is possible that this could be related to the pneumonia, which, by the way has gotten worse, so they have changed his antibiotics, but it also could be that now that things have somewhat settled down, that this where his pressures are going to sit.  He could possibly tolerate it that way, or he may not.  They need a plan in case.

Thats all I know for now, just spoke to Lisa but she was just in her way in, so she didn't know how overnight was yet, so I will update again later on this evening, when we get home from the hospital

.Heres hoping his very first birthday, is a good stable, positive day.

Laura

Hi everyone

Just thought I would do a quick update before I head to bed. I just got off the phone with my Dad, so here is the latest news... (I am feeling like maybe I should become a reporter.... hmmm??)

Wyatt has had a pretty good day!!  YAY, what a great thing to be able to say!  He had a few episodes still of his wacky heart rate, up and down, and also had one big blood pressure drop, but everything levelled back off again, and has stayed fairly stable.  They increased his dose of regulating meds for his heart just a bit, so maybe that has helped.  They got him flipped back over on to his back, and are doing a little bit of physio on him now (mostly on his chest though for now to help his lungs clear out the gunk)  He was doing some breathing on his own still through the day, but seems to tire as the day wears on, and doesn't do much at night... he did the same thing yesterday....  They have started his food back up... .a whopping 2mls an hour... but he is tolerating it, and that is great.  They will slowly increase it as he tolerates it.  They decreased his morphine a little bit again today, and he is tolerating that as well.  He is moving a tiny bit more, jsut his feet and arms, but a little more than he has been.  Still  not opening his eyes, but he is very drugged still.  It will be hard for him to move his legs and arms much as well, as he has been still so long, they are very stiff.  It will be alot of work!  The last piece of news I will leave you with tonight is that they took the catheter out today!  So that is really great, and must feel much more comfortable for him!  Now Lisa will be back to changing diapers again, which I am sure she will welcome, as it lets her be more involved with caring for him again... .even if it is a dirty diaper!
I will update again in the morning, lets hope and pray for a stable, quiet night, and that he stays on the right track that he seems to have gotten on today!

Laura

Hi everyone

Well, as you see we are almost to Wyatts very 1st Birthday!  What a year it has been!  His Birthday is on Sunday, April 27th.  And I wanted to let everyone know Lisas wishes for Wyatts Birthday at this time, as a lot of people are asking.  Lisa is waiting to celebrate his Birthday when he will be able to take part in the celebration.  Therefore, she does NOT want any presents or cake on Sunday.  Cards are welcome at this time, as they can be put up by his bed, and we can read them to him, but for now, that is all she would like.  Wyatt really likes to play with wrapping paper and cake, as we all have seen in pictures, and she does not want to celebrate when he is not even aware of whats going on, and won't get to have any fun, not to mention the fact that being that he is still in CCU, only 2 people are allowed in at a time, one of which is obviously always Lisa, AND no kids are allowed in, so, not really partying atmosphere.   So, I am asking everyone to please respect Lisas wishes in terms of Wyatts Birthday, and we hope to get to plan a big party for him soon, with tonnes of presents and cake!  Visitors are welcome, but please keep in mind it will likely be a busy day, and there will be many people wanting to see him that day.  We also never know if he will be going for any tests or anything like that, and obviosuly do not know how he will behave!   

Ok, with business now in order, an update on Wyatt himself!

His evening last night was much like his day. He is still having the erratic heartbeat, sometimes too fast, sometimes to slow.  They put him back on the meds to regualte his heart rate, and they have helped to tone it down in terms of it not going AS high as it was.. but it is still wonky..  It is also going to low at times, so he is still on the pacemaker too.  He was laying on his tummy all day and night yesterday, in hopes of relieving some pressure off his airway, and off the back of his lungs, as they were getting compressed from laying on his back for so long now.  They turned his head every four hours, but other than that, he is totally still.  He was taking a few breaths on his own over and above the machine while on his tummy, and that is the first time he has done that, so hopefully thats a good sign.  They took an xray last night to see how his lungs were looking, and they did see a bit of improvement, so thats good.  He had his usual night, of up and down heart rate, but nothing too major or unusual at this stage in the game.

This morning they are discussing his heart meds, and trying to figure out if they should leave him on this same one that is "regualting" his heart rate (sort of) or if they should try something different.  They are also going to flip him back over on to his back, as they did another xray this morning, and don't see much difference in comparison to the onethey day last night, so back over he goes. He is down to 50% oxygen, so that is good, and they are slowly trying to wean his morphine, at 5% a day less.  The next big thing will be to try to wean him down enough that we can also get him weaned off the ventilator.  The longer he is on that, the harder it is to get him off, so this is pretty important.  

They have not started his food back up yet, as they didn't want him getting any while laying on his tummy, and they also had to check his tube placement (which they have now done, and is fine) so hopefully maybe they can start it back up when they get him back on his back. 
His legs and arms and neck are all very stiff from laying there not moving for so long, so Lisa is allowed to gently massage / rub them, but he will need physiotherapy when he is more awake in order to get him back to where he was.

Wyatt has a very long road ahead of him, and he and Lisa both need lots of support and love and prayers, so please, do what you can for them.  Hopefully today will be another fairly stable, quiet day, and he can take baby steps to getting better.  This is Wyatt, and we know it won't be quick, but we jsut want to see some improvements, and I know Lisa would love to see his little smile soon.

Thank you all again for all the messages here, the phone calls etc, the support means alot.

I'll update again soon,

Laura

Hi everyone,

Just thought I would do a little update on Wyatt since yesterday.  The surgery went well of course, which is really good of course.  Here is a little bit of a better description of what they did.  What they did is they took his new pulmonary artery, and his aorta, and put a few sutures in them, and sutured them up to his breastbone, and off the airway.  Dr VanArdsell said the surgery went well, but was a bit disappointed with how much it helped, but it did help somewhat, so maybe, we hope, it will improve more over time.    Last night he was his usual wonky self, with his heart rate etc.  It goes up and down like a yo yo.  Same with his blood gases, sometimes they are great, sometimes they are not.  The Drs are saying he just needs time now,  to let him rest for a while.  They say with him, they are going to be baby steps, adn taken very slowly, they don't want to rush him.

Today, they have rolled him over on to his tummy, and want him to lay that way for a day or two, as from laying on his back so long, his lungs are compressed at the back as well, and this will also help to take pressure off the airway.  Since they have done this, he has started takign a few breaths on his own, over and above what the machine is doing for him.  He  was not doing this before.  His is off the muscle relaxant, but still very heavily sedated, as of course, just being freshly opened up again, they do not want him moving around.    There are alot of secretions in his lungs again, so they are also hoping that having him on his tummy will help him to expel that, along with the suctioning.

We don't know yet when he will be going to IGT for a new line, but hopefully not for a few days, they just want to let him rest, and as long as his IV's are ok, which they still are, then they will jsut leave him be.

Thats all I know for now, I will update again tonight when I get back from the hospital.

Laura

HI everyone

Wyatt was done in the OR around 3:30pm this afternoon.  He stayed stable throughout the surgery.  They did not end up putting any lines in at all, they will attempt a different type of line at another time.   For now he has his art line still, two IVs, the line in his neck, he will need another one, but it can wait a couple days anyways, as long as they don't lose the IV's
They were able to lift the pulmonary artery off the airway, relieving the pressure on it.  I am still wiating on details of HOW they did this exactly, but the important thing for now, is that they did it.  Dr VanArdsell was not happy with the effect it had on the airway, as it didn't open it back up the way he was hoping, but it did make a difference, so we have to hope that over time, it will help more.  They already have stopped giving him the muscle relaxants, so they don't want him to be so out of it for so long this time, and are hoping that he can come off the vent sooner.  Keep your fingers crossed, and prayers coming. 
He has been fairly stable since surgery, his heart rate is still a bit wonky, but no more so than it was before.  They have also stopped the medicine that was helping to control his heart rate, as they want to see what his heart rate will do off of it, as if he doesn't need it anymore, it can actually be making it go wacky, so taking him off it, is the only way to see what his heart rate will do now on its own.

That is all I know for now, I will update again in the morning with better details.

Laura