Hi everyone,

Well, the bronch is all done, and we do not have any good news to share unfortunately.

When they got in there, they discovered that Wyatts airway is all eroded.  Right down to nothing but cartiledge.  This has apparently happened due to the intubation tube in there, rubbing against it, irritating it etc.  There was also pus in the bronchus.  So, its infected.  They are putting Wyatt on steroids, and keeping him on antibiotics to see if they can get this to heal.  The problem is that since this has happened due to the intubation tube being there, and he needs the intubation tube, how can it possibly heal?  His vocal chords are also totally squished, and they do not know if this is permanent, or if they would bounce back if the other issues were healed.    They put a little bit of a smaller tube in when they re intubated him, in hopes that it would irritate it a little less, but they have said it is "really really bad"   They will not do a thing more if this isn't healed.  Not the stents, nothing, so we have to hope and pray that this can heal, given the steroids and antibiotics.  Lisa was not given a time frame on when they would expect this yet.    Apparently this is something that happens, but very rarely.. leave it to Wyatt....

They said had they known it looked like this, they never would have gone in today, and wouldn't have tried extubating him before either.   All this would be causing it to be more difficult for him to breathe of course, but even if all gets back to perfect there, he still would need the stents.

Anyhow, thats all I know for now, he has had his MRI as well, but we don't have any results on that yet.

I am also, going to take a moment to go over visiting with everyone.    I know there are a lot of people out there who would like to visit Lisa and Wyatt, but there are some guidelines that everyone needs to be aware of and adhere to, for the safety of Wyatt, and all the other kids in his room.

First, if you have been sick, or even NEAR someone who has been sick, you have to stay away for 2 weeks.  These kids cannot tolerate the things we can, and something as simple as a cold, can be life threatening to them.  So, as much as you would like to see them, please don't.

Second, please let Lisa know if you are coming (through me is fine and likely easiest).  This helps avoid 10 people showing up at the same time, and also to avoid going down if she KNOWS he will be having tests etc done that day and you won't be allowed in.  When several people wind up there at the same time, no one gets to see them very much, and also leaves days between where no one comes, and then one or two days where everyone comes.  Its really nice if the visits can be spread out.

Third, there are only TWO people allowed in at a time, and one of them is ALWAYS Lisa.

Fourth, If Lisa happens to not be in the room with Wyatt, you will not be able to get in untill she is.  Conversely, just because she is in the room, doesn't mean you will be able to go in, there are things she is allowed to stay in for that others aren't.. its her son.

Fifth, Getting an all clear to go, still doesn't mean you are guaranteed to see Wyatt... if one of the other kids in the room, or Wyatt himself, is having any sort of procedure, or is having a rough time, everyone gets kicked out, and is not allowed in until its over.  This can be minutes, this can be hours.  This is out of anyones control, and therefore, don't be surprised if it happens.  It happens alot, its a Critical Care Unit.

Sixth, and I think last, please don't send people Lisa doesn't know there to see her.  She is in no mood to be entertaining and pleasant to people she has never met before, or to rehash absolutely everything that has happened in Wyatts life over and over.  It also takes away from immediate family and friends who are trying to visit, and brings in unnecessary germs.  There will be a time and a place for you to meet Lisa and Wyatt, and this just isn't it.

That is all for now, I will at the hospital this evening, and will update again when we know more.  Prayers for healing for Wyatt now please.

Laura

Hi everyone,

I am just popping on to give a quick update to let you know that they did NOT do the rigid bronch or MRI or Evoke Potentials test today.....  They have the OR booked for 9am tomorrow (Friday) morning.  This is better than them having done it today in the CCU.  This way if they do see anything in the upper airways, then they can do whatever they need to do right then, as opposed to having to go back in again to fix anything.  Also, the MRI will be done immediately after the rigid bronch tomorrow, as he will still be sedated, so again, this will save him from having to be sedated again as well.   We are not sure if he will be having the Evoke Potentials test tomorrow too or not. 

I will update as soon as we hear anything tomorrow, and please, lots of prayers for Wyatt at around 9am tomorrow morning.

Laura

Hi everyone,

I am glad to finally say that we now have some answers, and a plan for Mr Wyatt. 

The Drs had there meeting today, and then spoke to Lisa.   Here is my best attempt at explaining what we know so far, and there are some variables that we have to wait to know about, so bear with me....

They have decided that they want to do the airway stents, provided there is nothing going on in his upper airways that could be causing him any trouble....  such as excess tissue, granulations on vocal chords, etc... so, the first step is, tomorrow, he will be having a "rigid bronch: which means he will have a bronchoscopy like he has several times before, but this time, they will extubate him first to do it.  Usually they use the intubation tube to do it, but they cannot get a clear look at the upper airways this way.  So they will extubate him, and take a good look at the upper airways, as well as the usual going down and looking there as well.  This will tell them if there is anything going on in the upper airways that could be causing him to have problems breathing... if there is, they will address that.  If not, the plan with the stents stands.  They are going to try and do this in the OR, that way if there is something that can be addressed, they can do it right then. But, if they can't get into the OR tomorrow, they are just going to do it in the CCU, as they want it done tomorrow regardless.  The next steps are that they want an MRI done on his head, and another Evoke Potentials test.. they tried to get them done today, but couldn't, so possibly tomorrow, depending on when and how the bronch goes.   They want these in order to know what is going on in his brain again, as it has been a while since they did check on things, and they want to make sure that nothing has happened there that could cause the breathing problems as well.  So, if these things are not done tomorrow, they will be done in the next couple days.   The plan then, if all is well, is to put in airway stents.  Lisa does not know yet how many, or where, as they will not know till they get there good look tomorrow.  She did find out though, that although all along she had been told that there was bronchial compression, there is also tracheal compression too.  So, depending on the extents of them, he may have stents in both areas.    The stents would be metal, and would be at least somewhat expandable.  Whether or not they would ever be removed would be based on how Wyatt was doing, if they weren't needed anymore, and how easy and safe they would be to remove.  There is no way to predict any of that.    Lisa also has to speak further with Dr Forte about a new stent they have been testing ,which is supposed to be easier to remove.  We will see what he says about those, and if they would be a good choice.    Of course there are risks with the stents, such as granulations forming on them causing a blockage, vocal chord damage, dislodging, etc, but they are still the best option for Wyatt.  If all goes perfectly well with the stents, then they would expect him to be out of the hospital in about a month or so.  Thats IF all goes according to plan... this is Wyatt we are talking about here!  He would be put on a puffer, one that is used for asthmatics, as it helps to prevent granulations from forming on the stents.  The expectation is that once the stents go in, he should be able to be extubated almost immediately.  Hopefully then he will be able to get rid of his pneumonia.

There are no plans for anymore heart sugery for another 4 to 7 years.  Dr VanArsdell says that it would just be too much for Wyatt, as what he would have to do in order to help the compression would be a lot.... extend the pulmonary artery, extend the aorta, lift and put in a bag.. it would be too much for Wyatt. 

They are not doing anymore drug weaning until the airway is taken care of, although they did take away his chloral (the sedative they used at night to help him sleep) and so he is struggling a little bit with that. 

He is still pretty sleepy, but when he is awake, he likes his toys, and to watch his baby einstein again...  He is up to almost 16lbs, which is AMAZING for Wyatt.... he was only at 10lbs when he went in for his April 10th surgery, and we know how he struggled to gain weight, so he is doing awesome there, and he looks huge!  He has been having his physio everyday, and cuddles with Lisa every day now too.  It will be really great if the stents go in and go well, and we can get him off the vent, and maybe even home in time to enjoy some of the summer this year! 

I think that is about all I know for now.  I will update again after we get results from tomorrows bronch, and if any of the other tests happen as well.  Also, I forgot to say, that if the stents are a go ahead, they will be doing them within the next ten days. 

Lots more prayers for Wyatt to stay strong over the next few days!

Laura

Hi everyone,

Sorry for the delayed update, but again I was kind of waiting to have a few more concrete answers for you all, but we still don't, so I will just share what we know.

Wyatt has been having a rough week.  Monday was supposed to be the Drs meeting, but it didn't wind up happening, as it was a crazy morning for them with some other children.  Luckily, they are ok now.  Wyatt did have his CT scan done Monday afternoon, and they thought that the airway compression was looking better than the last CT.... we thought this seemed like good news.  Tuesday, some of the Drs met, but they weren't able to have all of them there, as one was in surgery, and Dr Russell still isn't back yet.  So, Dr Van Ardsell, Dr Schwartz, and Dr Bohn met, and spoke aobut Wyatt.  Dr Van Ardsell said that he would not do anything surgical at this time.  He did not feel that it has been long enough since the last surgeries, and because he has been through SO much with all the surgeries he had in April.  Plus, the life is holding still (the lift of the aorta and conduit) so that there really wasn't anything else he could have done anyhow.  It looks, on the CT scan, as though one of his collaterals is growing (one of the ones they moved originally to use as an artery) which we think is excellent, as we all have been hoping and praying for this... but... it seems as though it is also putting a bit of pressure on the airway... go figure... anyhow, Dr VanArdsell said that it is not putting enough pressure on it at this point, that he would do anything about it.  He said that if that were the only thing putting pressure on it, we wouldn't have a problem... so really, we are still in the same situation, with the conduit and aorta putting the pressure on....  The Drs do not feel that Dr Forte will do the airway stents just yet (he was in surgery at the meeting) because the CT was showing a little bit of improvement from the last one.  They felt that as long as things were improving, he would likely want to keep waiting.  They agreed with Lisa though, that a time frame needed to be set, on how long they wait.  As obviously Wyatt has to stay on the vent until either A this gets better, or B, they do something about it to make it better.  So, they are working on what they think is a reasonable time frame.  The reason for this also, is that this is not good for Wyatt to be laying there and on the vent for so long.  It is not good for his development, physical or mental, or for his brain growth.  Lisa is concerned about that.  So they are to figure out a time frame, and speak with Lisa again.

Now on Friday, Wyatt was having a really crappy day again (or still?) and so Dr Bohn decided he wanted another bronchoscopy done to take a look again, as they are going to try again this week to have there big meeting with everyone (And Dr Russell will be back for it) so, he wanted a new one, well, it shows that the airway compression is NOT any better... so, we don't really know what is going on now...  Lisa said there only explanation was that it could have looked better on the CT scan because he was sedated, and that when he is not sedated, it is worse.  So, back to square one again, so we will have to see now, what Dr Forte says, knowing this... if he will still want to wait and see what happens a while longer, or if he thinks the airway stents should be put in. 
The catch 22 with the airway stents is that we KNOW they will help him now, and they will get him off the vent, but they are so dangerous in the long term, which is what makes it so hard to decide.

On a good note, when Wyatt is not miserable, he seems to be awake a little more, and getting both of his eyes more open, which is nice to see.  We have gotten a few little grins out of him this week, so that has been nice too.    His feeds are still at 14mls/hr, and 3200 calories, and his morphine at 4.4mcg.   He has been throwing up alot this week, and has pseudonomis pneumonia again, so he is back on antibiotics.  We aren't sure if this is why he is throwing up too, or if there is something else going on, so they have redone all the cultures again and we are waiting for those results still.  Everything he is throwing up though, is mucous, from his lungs. 

We also wanted to say hello and thank you to our new friends, Ashleigh and Shannon and Kathy, and there little angel Phoenix.  And thank you so much!   Your kindness is inexplicable, and so much appreciated.   We hope to see you again soon, and that you can meet Wyatt.

This is about all I know for now.  We will have to wait now to see what the cultures say, and then wait for the Drs meeting to see where we go from here.  We really need him off that vent, but in the most safe, long term way we can.  So, lots of prayers for Wyatt that his airway will get better on its own in quick enough time, or that they can come up with some other solution that they hadn't thought of yet.

I will update again soon,

Laura

Hi everyone,

What a long day yesterday was.  There had been talk over the last few days of trying to extubate Wyatt again.  There wasn't really a date, or anything like that, just talk about it, from higher settings, to see what he would do, were he extubated, and allowed to wake up a little more..  Would he be able to breathe, maintain his sats etc..  How would his airway compression affect him?....

Dr Schwartz decided yesterday morning, that he wanted to do it that day.  So they planned for 1pm.  He had been having a very fidgety last few days, and cranky, and he was thinking maybe it was due to the fact that he hates the tube, and that if they extubated him, and allowed him to wake up a little more, that he may hold his own, and tolerate the compression.  Lisa was a little nervous about it, but they went ahead anyways.  They extubated at 2pm... he really really struggled.... he had one hell of a time breathing, struggled hard, you could see his whole body fighting to take his breaths.  They tried keeping a mask over his face and bagging him, nothing was working.  They tried for just over an hour.  He was really struggling.  Dr Schwartz stayed by his bed the whole time, and finally said, he needs to be reintubated.  Lisa asked if they should give him more of a chance to settle down, that maybe it was just the trauma of it all, and Dr Schwartz said no, for Wyatts safety, we need to get him reintubated, or we will wind up in a crisis.  It was nice to see his cute little face without all that tape, even if it wasn't for very long.    They got him reintubated, but he did not settle down.  Lisa was of course very upset, and Dr Schwartz tried to explain to her to try not to think of it as the failure that it was, but that they learned important information about Wyatt.  And that sometimes they just have to try things to be sure, and that now they have valuable information about Wyatt, and they know that he needs something now, that his airway is quite possibly worse, and that they will do a CT Scan today to take a look at it.   He struggled away for hours after that.  He was still having a hell of a time breathing, even on the vent, and was squirming, and flailing, and they gave him sedative after sedative, and nothing was working.  It was very upsetting to see him like that, and non stop.  It didn't matter what they gave him, it didn't make one scrap of a difference.   You could see that he was miserable, uncomfortable, and unable to breathe properly.    They played around with the vent settings alot, took an xray of his tube, and found it was  bit low, so they untaped it all again, and pulled it back a little.    Finally, Dr Schwartz ordered even more sedative, and that was enough to get him to have a little sleep.  We went and had a chat with Dr Schwartz and the nurse and RT and us.  We didn't learn alot yet, but they will have there surgical meeting today, and they have also ordered a CT Scan for today of his chest.  They are going to determine what needs to be done, and what options they have... the ones we know of right now are airway stents, a tracheotomy, and reversing the surgery.  None of these are great options, and all are short term fixes, and all have serious risks and complications..  The hope of course is that a short term fix will get him to a point where he won't need anything anymore.  It is deciding which short term fix will be best, and least risky, and most effective for Wyatt, and what is safest of course, not an easy decision... Especially in thinking of quality of life terms.  Anyhow, today after the surgical meeting, they will discuss with Lisa what they think and, then they willl look at the CT, and then there will be a meeting at some point with Lisa and all the Drs to make a decision.  This will likely not be until Dr Russell comes back later this week though.

Other than that, he is back on his feeds now (post extubation) and at 15mls/hr, 3200 calories, and he is still on 5mcg of morphine.  Dr Schwartz said they will play with the sedatives a bit, cause they want to keep him comfortable, and him flailing about constantly is obviously not him being comfortable... So he may be more sedated and sleepy again for a few days, until they decide what to do.  On a good note, he does seem to be getting his eyes more open, when he is awake.

That is about all I know for now... Lisa has still not gotten the ultrasound results back, maybe she will today.  The cultures they did the other day have alll come back negative, so that is a good thing.  I will update again when I hear about the meeting and CT Scan.  Lots of prayers for Wyatt and Lisa please. 

Laura

Hi everyone,

Wyatt has still been having a rough time the last couple of days, and we still do not know why.  He is still having the spells of not being able to breathe, and of course then he gets upset, and it gets even worse.... we are not sure what comes first.. him getting upset, and therefore making his airway more compressed and unable to breathe, OR, he is unable to breathe properly for some reason, which in turn makes his airway worse, and then makes him more upset... it is a vicious circle. 

HE has been very cranky and fidgety, and we are not really sure why that is happening either.. there are a variety of things it could be. I think the most likely being some withdrawal still from the morphine weaning.  He is down to 5mcg of morphine now, so WAYYYYY down from where he started!  They have his food up to 14mls an hour, and 3200 calories, and he is tolerating that well so far, and not aspirating so far. That is great news. 
They did the echo the other day, and the results yesterday were that everything looked the same as the last echo.. which is both good and bad... good that nothing is looking worse, but bad cause now we still have no idea what is causing these problems....  They also did ultrasounds on all of his blood clots yesterday, that the results were supposed to be given to Lisa today, but they could not find the report, so Lisa does not know what they said yet.    Hopefully they will have found them by tomorrow.

There is going to be a surgical meeting on Monday to discuss Mr Wyatt, and determine what the next steps will be.. they will then have a family meeting with Lisa a few days later.  They need to decide what to do about this airway compression.  Lisa spoke to Dr Bohn about it, and he told her it was very severe compression....  Alot of the Drs seem to be really against the airway stents, but it is really looking like Wyatt may need one (or more we don`t know) so, that is going to be part of the discussion.    Dr Schwartz today said that he wanted to try to extubate Wyatt again soon, even if his settings aren`t down to extubatable settings, as they seem to not be able to get him down to extubatable settings and have him awake enough to tolerate it, as he obviously understandably does not like to be intubated when he is awake.. so Dr Schwartz idea is to extubate him from the higher settings, more awake, and see what he does.  That will likely happen sometime soon.   We are not sure when though.  HE is hoping that maybe he can wake up more and tolerate it, but we`ll see with Mr Wyatt!  He has had some very cranky days the last couple days, but last night he was very smiley, so that was really nice for Lisa, and you wonder sometimes how he can do that!  He is still pretty sleepy too.

That is about all I know for now.  He is still really enjoying his bath, and often falls asleep in it... He likes to squirm his way down into it, so that he is more submerged in it, little turkey.  No smiles tonight for Lisa, so hopefully tomorrow will be a better day.  His picc lines stopped working again, they will infuse, but will not draw blood, so they have to get that fixed up in a hurry.

I will update again soon,

Laura

Hi everyone,

I have been waiting till I had a little more concrete information for you to report, but it seems we are not going to get that just yet, so I will let you know what we know so far...

Wyatt had his couple of really good days, and the goal had been to extubate him by Monday (yesterday)  Well, after his couple of really good days, he has been having some lousy days.  SO, he is not extubated, nor is he near ready now.  All his vent settings are turned back up again... He has been having spells of not being able to breathe properly, then he gets upset, cause he can't breathe properly, which in turn, makes his breathing even worse.  They do not know why this is happening.  They thought it might have been his airway compression, that maybe it was getting worse, so they did another bronch yesterday, but that showed that it was still the same, no better, no worse.   So its not that.  Now they do not know why it is happening.  The first few times it happened it was just his breathing, and his blood pressure would increase....but yesterday when it happened, his heart rate dropped really low, and so did his blood pressure, and they called a code blue, as they thought he was going to arrest.  Everyone came piling in with everything they needed as his numbers dropped, but then, they slowly came back up again on there own.  He did not end up flatlining, which of course is good.   So, they now have to figure out what is going on.  Lisa has asked for an echo, a head ultrasound, and a CT, but she does not know yet if they are doing them or not.. it will be up to the Dr that is on, and if its the same one as yesterday, it won't be likely... as Lisa was arguing with him all day about these things.   She wants the head CT and or ultrasound done again because he is extremely sleepy again... last wekk he had been awake and alert alot, playing with his toys etc,  Now since these spells started, he is very sleepy again,  She wants to make sure nothing has happened again,

His morphine is at 7mcgs still, and his food is at 3000 calories and 8mls an hour.  He has been having almost daily baths now, and when he was awake and alert, he was enjoying them very much, as well as his Baby Einstein movies...

That is all I know for now, I will update again when I hear more.  Lots of prayers for Wyatt still please....

Laura

There are about 15 more pictures added to the golf folder too.

HI everyone!

First to let you know, I have added more pictures to the Golf Tournament folder, so go take a peek.  That should be pretty much all of them now.  I do have a video as well, but it is an hour long, so I am not sure I can get it on here.... I will see what I can do.  If anyone else out there has pictures or video that I don't yet have, please let me know!

Wyatt got his blood transfusion finally Tuesday night.  What an improvement since!  Well, we all knew that wouldd happen anyways, but some Drs don't think so... anyhow, Wyatt proved them wrong, once again.  His color improved by miles, he was happy, alert, awake, and just so much better in general.  They also started him on another antibiotic in addition to the ones he was already on, and by yesterday mornings x ray, they already saw an improvement in his lungs.... so hopefully this will be the one to help get rid of this nasty pneumonia.  He was awake quite a bit yesterday, and has given Lisa a few more smiles, which of course makes her so happy.  He is still not getting his eyes all the way open, so they are saying now, maybe they might have hit the nerve, either when they opened him up, or  when they put the line in his neck, and that is what is affecting his ability to open his eyes.  This, as usual, may or may not get better with time.  We sure hope it does, as he has such big beautiful eyes to show everyone, and we can't see them very well right now.  He is, however, able to watch his baby einstein now, which he is back to thoroughly enjoying... he is kicking his feet, and gets mad when it is over... We are happy to see this!  He is making funny faces, licking his lips and sticking out his tongue lots now, and the big news of yesterday is that HE GOT TWO MORE TEETH!!!  The two top teeth have now come in, so he is a man with FOUR teeth now!!!  So, we want lots of smiles to see those pearly whites!!  Unfortunately right now you can only really see them good when he cries :(  So we hope we don't see them too much right yet.

His vent settings are slowly coming down again, and he is at a peep of 7, support of 11... they were to decrease the peep again to 6 in the middle of the night last night, but I haven't spoken to Lisa yet to see if they did or not.  Then later today they would decrease the pressure to 10, then nothing again until tomorrow.  His oxygen is at 35%... if he continues to wean at this pace, he will be at extubatable settings again on Saturday, so they hope to have him extubated by Monday... Fingers crossed for this, and that he tolerates it this time!  I had a little chat with him last night, as Monday is my birthday, and I told him that would be a great birthday present, and that he has to do something special for my big birthday... soooo, we'll see if he listens to his Auntie this time.... he hasn't listened to me yet, so its about time he starts!!!    Last yeare on my birthday, Lisa and I gave him his very first bath, so this year, I want bigger and better, I want extubation, and toleration of it!!!

His food is still at 6mls an hour, and he is tolerating that well so far.  They also weaned his morphine back down to 7mcg yesterday, and he seemed to be tolerating that ok os far also.

I will update again soon!  Don't forget to peek at the pictures, and thank you again to everyone who helped out and/or came out to the golf tournament.  I gave Lisa copies of the pictures and video last night, so hopefully she will enjoy them, and she and Wyatt will get to be there for the next one.

Don't forget that I am still selling draw tickets for the WestJet tickets, draw to be held on July 15th.  Get in touch with me if you are interested in purchasing some, $3 each or 2 for $5.

Laura