Hi everyone,

Wyatt has been struggling away trying to get rid of this darn infection still.  He has gone up and down over the last few days, of weaning down the vent etc, and he was pretty much at extubatable settings, but he was sooooo miserable and cranky and thrashing around alot, so he wound up having to be muscle relaxed again for two days.  This allowed him to rest though obviously the vent settings had to be turned up and breathing for him.  Last night they got him back off the muscle relaxant, and so now they are working on weaning his settings back down.  He is currently at 45% oxygen, peep of 8 and pressure support of 15.  They will wean this down slowly again.  They are also still trying to wean his sedation down, but it is a fine line balancing act of how much they can wean but still keep him happy and comfortable. 

He is now on three antibiotics and an antifungal to try and get the infection under control, and his white count is coming down finally today, which is a good sign.   He has not been eating for the last few days because he has not been able to digest his food and his G tube has leaking.  They are trying to decide what they want to do about that.  Lisa is asking them about increasing his tube size, but she is not sure yet what they are going to do. 

They have done ultrasounds on all his clots again today to check the status on them now, but we don't have results on them yet.

So for now, all we have to hope and pray that he fights and gets rid of these infections.  He is on the top antibiotics that he can be on for these infections, as well as his antifungal.  Also that they can get this stomache issues sorted out soon, so that he can get back to eating again.  
He needs to clear this infection at least somewhat, enough that he can cough and get the secretions out himself, and so that he is able to get off the vent and finish clearing up the infection.

I will update again soon,

Laura

Hi everyone,

Wyatt got two stents yesterday, both in the left bronchus, as it was a long area of compression, so it needed two.  When they did these, it opened up the tracheal area that was compressed, so they didn't put one there after all.  The procedure went smoothly, and Wyatt did well.

They left him extubated afterwards, and he was struggling, having a really hard time breathing.  He desatted down as low as 4, and was sitting mainly in the 50's.  They put him on CPAP, but this wasn't enough for him, so after a few hours, he wound up being re intubated.  He was having a tonne of secretions in his lungs, and they couldn't get them suctioned out while he was extubated, they couldn't get down far enough.  Once they re intubated, they suctioned him, and got a tonne of stuff out.  They were going to leave him be over night, let him rest, and keep him comfy.  They will try extubating again soon, maybe today or tomorrow.  It is likely going to be hard for him to come off the vent no matter what, because he has been on it so long, but hopefullly, it will be easier than yesterday.

His airways looked a tiny bit better, but not much.

His white count is up again, and he had a fever last night as well, but both those things can be from pain or stress, so we will see what today brings.  Hopefully he does not have another infection brewing.

That is all I know for now, I will update again this evening.

Continued prayers for him to get off the vent soon. 

Laura

Hi everyone,

So they extubated Wyatt on Sunday, and he was doing ok, up until he got upset.   He was put on CPAP right when he was extubated, and there plan was to leave him on that for the day, and then try the next day to get him off it for an hour and see how he did.  He and Lisa had a nice snuggle, he had his physio, and so on.  In the afternoon, they came back to do his physio again, and this is when he got upset.  They could not get him settled down, and the more wound up he got, the more he desatted, as the compression would worsen.  This went on and on, he was desatting into the 20's and teens.   they then decided that he was not tolerating extubation.  They had to try several times to get him re intubated, and then could not do it nasally.  They wound up having to do it through his mouth, which of course, did not make him very happy.  They are having to keep him quite sedated because of it, and are having a hard time doing so. 

He had his MRI done today finally, but we do not have the results yet.  Hopefully we will get them tonight or tomorrow morning. 

Dr Forte came and spoke to Lisa today after speaking with the Drs that were on yesterday, and they will be putting the stents in tomorrow (Tuesday) morning.  They will do a bronch first, and then put the stents in.  He will not decide how many, or where exactly, until he gets in there and sees with the bronch again.  They have decided to use the old type stents, not the new ones that are being tested, as there has not been enough testing on them, and since Wyatt needs them for a long time, and the new ones have never been used in cases with such bad compression as Wyatts, the old ones are a better bet.

Other than that, in preparation for tomorrow he will be without food over night.  He will be sedated for the bronch/stents, and depending on how asleep he is when it is done, will decide when they try to extubate again.  If he is fairly awake, they will extubate right away, if not, they will try the next day.   Please say lots of prayers for Wyatt and Lisa tonight, and that tomorrow morning goes well, and that this is what he needs to get him going, and moving on out of there to enjoy some of whats left of the summer, outside of the hospital. 

I will update with how it all went tomorrow

Laura

Hi everyone,

Once again, I first want to Congratulate Lisa Dollery on winning the 2 round trip airfare tickets anywhere in Canada from WestJet!!!!!

Wyatt has been just staying very sleepy and sedated, trying to heal still.  They are slowly weaning down the vent each day, trying to get him to extubatable settings by the end of the week.  They are having to go quicker than normal, but so far so good.   They are planning to do an MRI Friday, if his settings are low enough.  Lisa is still trying to get them to do another Echo.  We are also still waiting for the date for the stents to go in next week.    The sedation seems to be working ok, he has periods of wakefulness, where he seems to be fairly comfortable, and just looking around, watching, and checking out his toys etc. 

He is growing another bug in his lungs again now, and still has his pseudonomas.  Hopefully, once they can get him extubated, either with or without the stents (preferably without) he will be able to clear these infections.

That is about all I know for now, I will update again later.  Hopefully we will have a date by then.

Laura

And the Winner is Lisa Dollery for the two West Jet Tickets, we would like to thank everyone for participating.

There will be another update coming this evening.

Hi everyone,

I haven't updated as there hasn't been much to update up to now, other than they have been trying to have Wyatt rest as much as possible, and keeping him comfortable, whatever it takes.  They have had to play around with his sedation orders quite a bit, but for the most part, he has been pretty calm and settled. He is opening his eyes quite well now when he is awake, which is nice to see.

They made a plan for him today, and here it is....

His vent settings are really quite high still, seen as they have jsut been keeping him comfy.  They decided today to start weaning the vent, and there goal is to extubate late this week. They want to try it one more try before they go ahead with the stents.  This will be a much faster vent wean than Wyatt is accustomed to, so we aren't too sure how well this will go over.  At the same time, they will be keeping him comfortable.  His cultures all came back as pseudonomas, so they are still treating that with the antibiotics, and I must say, he is looking much better today than he was the other day.  The other day his color was just awful, very grey.  Today he looked quite nice and pink again.  That was good to see.   This week they will also be looking at doing the MRI, though his vent settings have to be quite low to be able to do that, so hopefully the wean goes ok.  The MRI will be of his head. They were also talking of sending him to the Cath Lab, as he is shunting his blood the opposite way of what he normally does, so they wanted to take a look and see why.  Though once this was discussed with all Drs involved, they decided this was not the best option, and that they should take a nother look in another echo to see if it has changed back, as apparently sometimes this can happen due to illness.  Lisa is pushing for the echo to look again.  Sometimes it can also be due to a blockage, so hopefully this is not the case.  He has come down quite a bit on his oxygen requirements, so hopefully this is a good sign.  So, they will do the extubation at the end of the week.  If he tolerates, fantastic, if not, then they have the stents booked for next week, regardless, it seems, of the airways healing status.   There plan right now is to do just the stent in the lower distal trachea, and see how he does with that one only.  If he tolerates, great, if not, they will do the bronchus as well.  The reason for this is the tracheal ones are slightly easier to get out (still not eas though)  Lisa is still waiting to hear about the ones they have been testing. 

So that is the plan so far.  Hopefully Wyatt stays on track this time, and we have a good week!  He is looking SO big!

Also, just to remind everyone, the WestJet draw is tomorrow!!!  It will be drawn around 5pm, and I will post the winner as quick as I can get back home and get it on here!  Good luck to everyone, and thank you to all those who bought tickets!  Don't forget to check and see who won!  I am super excited!

That is all I know for know, I will be back tomorrow evening with the winner!

Laura

 Hi everyone,

Well, Mr Wyatt is a pretty sick little man.  His pneumonia is worse, his infection is worse, he has green and yellow stuff oozing from his GJ tube site, his aspirates from his stomache are looking funny, and he is not digesting his food properly.  His liver is very enlarged, so much so you can see it just by looking at him, and they have no idea why.  They have done ultrasound and x ray on the abdomin, Lisa is waiting to hear what they say.  They also did the echo, yesterday, but Lisa has not gotten the results yet. 

Lisa says he is very puffy still, and looks very dusky.  His sats are not good still, though they have finally decided to put him back on a regular dose of diuretics, so hopefully this will help him a bit.
They are no longer looking at doing the MRI right now because they do not feel he is stable enough to move him anywhere, or do anything like that.  He is too unstable for pretty much anything right now, due to his respiratory status, the infections, etc, he is a very sick little man.

Also, the Drs & Nurses have asked that only immediate family come to visit for now, as there is absolutely NO way Wyatt can handle the remotest possibility of any germs right now, nor can he handle too much stress.  So, again, please, we all know everyone means well, and if you really need to say hi, stop by here, or caringbridge and leave a note, but please no visits right now from anyone other than immediate family.  I know you will all understand and respect this.

Thank you, and I will update again soon,

Laura

Hi everyone,

There is not too much to report right now.  They are just keeping Wyatt very sedated so that he is not uncomfortable, and so that he is not thrashing about.  He was often thrashing his head and arms about, and this would make it worse in terms of the intubation tube irritating the airways, so they do not want him doing that anymore.  When they reintubated him they used a smaller tube, and are not allowed to inflate the cuff for any leaks.  They are to do whatever it takes basically to keep him comfortable right now. 

When I saw him last night, it was actually the most awake and alert I had seen him in ages, his eyes moving all around, taking everything in, yet very calm and still.  They are having to give him a lot of meds to knock him right out. 

They plan to keep him this way for likely a couple of weeks before they take a look again to see if the airway is healing.    Then they will have to do a bronch again to look at it.    We hope and pray until then that it will and is healing.  They are keeping him on antibiotics as well, in order to help the infection. 

They did the Evoke Potentials test again, and his vision was back to normal.   He has diminished hearing in both ears now, but we aren't sure if that will change any if the airway heals. 

He has not had his MRI yet, he is on the list waiting for one, but they are very busy. 
He is having an echo today, to check the shunting of the blood as his sats have not been very good the last few days.

That is about all I know for now, I will update again when we hear about the echo. 

Continued prayers for Wyatt please.

Laura