Hi everyone,

Sorry for the delay in updates, but as I am sure you can well imagine, it was a very busy few days around here!

We had our first Annual Golf Tournament on Saturday, and it was a great day!  We had excellent weather, a great turnout, wonderful people, yummy food, lots of fun, prizes, and of course we were all there for such a wonderful cause.  The only thing missing that day was the fact that Wyatt and Lisa couldn't be there.  But I think that we captured a lot of it on camera and video, and hopefully can share it all with them anyways, and that they will be there next year to greet everyone. I hope that everyone had a great time, and that we will see you all back again next year!

Wyatt has been his usual busy self the last few days, he is still intubated of course, trying to get to feeling better.  HIs hemoglobin is quite low right now, and he is looking  dusky, so Lisa is in the process of arguing with the Drs trying to get them to give him a blood transfusion.  Hopefully they will give him one today.   Lisa did get a smile out of him on the weekend, that was the first one she had gotten since before April 10th surgery, so this was a huge big deal for her and him.  He was watching Baby Einstein and she was telling him to kick his feet, and he smiled.  Lisa was VERY happy to see that, and of course now she wants more ;)     He has still been pretty tired, but his low hemoglobin can be at least partly to blame for that.  He isup to 6mls/hour of food now, and seems to be doing alright so far.  They want to try to extubate him again soon, but Lisa does not think he is ready yet, and definately thinks he needs another transfusion first.... The Dr said his lung xray looks great (for Wyatt) and the RT said it looks terrible... so she is trying to find out who is right.. though she is more inclined to believe the Dr as he knows Wyatt well, and the RT has only seeen Wyatt twice.  So, she may not realize that what might look terrible for someone else, is actually good for our Wyatt. 

That is about all I know for now, Thank you again to everyone who took part in the golf tournament.   I will update again soon

Please go look at the pictures from the tournament, and I will be adding more over the next couple of days, as well as some classic unforgettable videos!!

Laura

HI everyone,

Wyatt has been a busy boy the last couple days... as you all know, he was re intubated.  After the intubation, he has looked much better.  And his sats of course picked back up to where they should be.   They had taken cultures of the stuff in his lungs again, and they did come back as the pseudonomis (sorry, probably not spelt right) pnemonia again, and he is back on antibiotics for that.  He is also septic now... we don't know if its due to all the bad gases, or why, but he is, so he is also being treated for that. 
The day of his intubation he was kept sedated so that he could rest, as he was exhasuted, but he is now waking up again quite a bit.  He seems alright when he is awake, not too mad, which is a good thing, considering he can't be moved much while intubated. 
They have finally restarted his food, which had been further delayed by the fact that he had some blood in his poop and also his stomache, but they sent off cultures, and have now decided to restart his food, at a little 3mls/hr.  At least its a start.. Lets hope he does not aspirate anymore on this food....

He needed an arterial line again, as his PICC line had stopped working again, it would infuse in one side only, and not allow them to take blood anymore.. so the Dr put in an arterial line, only for Wyatt to lose it the next morning in typical Wyatt style ;)  So the PICC line started working again, so they didn't worry about it... then as of last night, the PICC was only infusing again, so he then needed another arterial line, and they got one in his foot. (This is a first for him in the foot). 

He is doing his breathing on his own again, just on the vent for the support and pressure on his lungs, though it is no longer at the highest settings like it was the other day... hopefully once they get this pneumonia and sepsis cleared up, he can try again coming off the vent.  The trick is that the pneumonia is hard to get rid of as long as he is on the vent, as it is caused by being on the vent....

So, please keep Wyatt in your prayers, that the pneumonia at least gets a bit better so he can come off the vent, and that they get the sepsis cleared up.  This is extremely vital that he gets rid of this.    He looks much better then he did the other day, though still not quite like himself.  His numbers are all looking good right now, and he is awake a lot more.  His eyes are open, but he still does not get them wide open.  It is hard to tell what he is looking at, or what he sees, but his eyes sure are moving around.  His right eye is still having more trouble than his left.  He got his baby einstein videos back last night, so maybe that will be some motivation for him to open those eyes up some more, with something he loves (other than Mummy ;) ) to look at.  Fingers crossed...

Tomorrow is the big golf tournament, and we are very excited and can't wait to see everyone there!  It is going to be such a great day, and I am hoping that the weather holds out for us!

  Thank you to everyone for your continued support for Wyatt and Lisa.  Unless there is anything major to report, I will probably not update until Sunday, as today and tomorrow are extremely busy days!

Laura

Hi everyone,

Well, it has been a rough couple of days for Wyatt.... As you know he was extubated Saturday, and then wound up on BiPap Sunday morning... since then he has been having a hard time, and they have been going back and forth as to whether or not to re intubate him... they would check his gases and say they were bad and he had to be re intubated, then the next gases would be a little better, so they would leave him alone... then the next one would be worse again.. .then better again.... it has pretty much been like that the last couple of days.  He has been on BiPap constantly since they put him on it, and had been sleeping most of the time, except for during suctioning.   They weren't feeding him, in case they needed to re intubate him, they didn't want him to aspirate.  Last night was a particularly bad night, and Lisa was up with him till 5am, when they finally got him to a point that they thought he was alright, so Lisa went to bed for a couple of hours.  Well, turns out he had not decided to behave after all, and the day was a rollercoaster ride of Drs saying they were going to re intubate, then not, then they were again.  There were many Drs around, making the decision.  There were about four occasions when they were ready to do it, then he would suddenly pull up his socks and behave for a few minutes again, long enough to make them back off again....  Well, the day wore on, Wyatt was extremely exhausted, havign a hard time breathing, and was extremely grey in color, and Lisa finally asked them to just please re intubate him, as he was far too tired to even breathe on his own anymore, and they were faltering back and forth as to what to do.  His gases were very bad, and his sats were sittign at 50, on 100% oxygen on the BiPap, plus, 100% oxygen on blowby.  Lisa said she has not seen him look like that in a long long time. 

They agreed, and decided to re intubate.  It took 4 attempts before they finally got it in.  IT was very tricky, as obviously he cannot have th BiPap on when they are trying to intubate, and he was so tired, and he was muscle relaxed, he was not really breathing for himself, so they had to do it for him, then stop to try to intubate. They had to very carefully watch his numbers and heart rate, so that it didn't stop, and then try again.  They finally got it in, and Lisa said he looks much better now, and is sleeping.

It has been a very very long day for both of them, so hopefully, tonight will be calm and quiet, and they will both get some rest. 
They took a culture out of his lungs again, as the stuff they were getting out was very thick and sticky and brown and yellow.  Not sounding too good.  This stuff was so thick, that this was why they were having such a hard time intubating him, it was blocking the airway.  So, now we just wait for the results of that again.  They are supposed to restart his food, and that hopefully will be it for tonight.

I will update again soon and let you know how he is doing,

Prayers for a good nights sleep for both of them tonight.

Laura

Hello everyone,

I am happy to say that I am finally here with some good news!  Wyatt was extubated yesterday!!  He is doing OK so far.... he is having some troubles with all his secretions in his lungs.. not coughing them up, and since they cannot suction his lungs anymore, only his mouth and nose, this is a problem, and if it continues to be, then they would either have to re intubate him, or try another machine type thing, called a bypap, which is a mask worn on his face that applies pressure, and I guess helps to get the stuff out of his lungs somehow...  I am sure he would just love to wear a mask  He is right now under the oxygen bos again, which he has been under before of course, getting 100% oxygen.  He had to be sedated yesterday, due to all the secretions, and trying to suction his nose and mouth etc.  Lisa said his face is all smushed, from it being taped up for so long now.. almost two months!   We sure hope that he can hold his own, and tolerate being extubated, and that he tolerates his airway the way that it is.  He is still on steroids to help the swelling in his airway also, so hopefully that will help too.  So, he was started on steroids Friday night in preparation for extubation Saturday, and he had a good night, he was down to peep of 5 and pressure of 8 for two days, as well as oxygen of 35%, so he was ready to go.  His lung looked the same as the day before, so they went ahead.  They were not going to be surprised if they had to re intubate him, the Drs said, but so far, as per usual Wyatt style, he has proved them wrong! 

Also, the other day, they had discovered that Wyatt was aspirating on his food... This could have been the cause of all the fevers he has been getting and so on... so they stopped his food for a while, and discussed what to do about it...  The options were to try a GJ again, (Which caused the intessusption before) or a fundoplication (you will remember the talk of that before the April 10th surgery) Which is a surgery which wraps a part of the stomache around the exophagus, to stop the refluxing... not something we really want to have Wyatt to have to have.  So, Friday, they decided that trying him on the food he used to be on before he got the Kyle, would be the best thing to do first, as it is pre digested, so he would digest it much faster, therefore meaning maybe it wouldn't be sitting in his stomache long enough to aspirate on it.  So they changed his food Friday, and are only giving him 5mls an hour, and not as many calories as he was getting, I think it is at 3400, for now, to see what he does.  If this doesn't work, they will try the GJ again next.

Dr Russell was also in to see Wyatt, and had told Lisa that if in two weeks Wyatt was not extubated, they would consider that a failed extubation, and would start talking about doing the airway stent.  SO, this means we really need to hope and pray that Wyatt stays strong, and tolerates this well, so that he does not need an airway stent.  We do not want an airway stent!

Wyatt has been waking up alot more (except yesterday being sedated) and he has been holding Lisas hand, and opening his eyes more, and even watching Baby Einstein.  These are all great signs, so lets hope he keeps them up! 

Wyatts little friend, Samir, and his family, also need many prayers right now, so maybe you could say some prayers for him as well right now, as he is really not doing well.   Wyatt has known Samir for a long time, and they are roommates right now in CCU.

This is all I know for now, I will update again as soon as I know more.

We are now 6 days away from the Golf Tournament,  So I hope to see many of you out there, remember you have Till Wednesday to sign up and make payment! 

Ok, I just got off the phone with Lisa, so rather than re vamping my whole update, I am just going to add it on...  Wyatt is on bypap now, he is having a lot of trouble with his secretions.  They had done his gases, and they were not good, so the staff DR wanted to re intubate him, but Wyatt has a good nurse today, and she asked them to give her an hour with him, and she would work on getting rid of the secretions, then take his gases again, and see where they were at, so they agreed.  So that is where he is at right now.  He does not have to be in the oxygen box while he has this mask on, and he has had to be sedated again more, as he does not like the mask (Surprise surprise!)  Hopefully, he'll get over this little hump, and stay extubated, as all his other numbers, sats, resp rate, and heart rate, are looking good.

Fingers crossed, and I will update again later this evening.

Laura

HI everyone

Sorry for not updating sooner, but I was hoping to wait to have good news to share with you.

Wyatt did not get extubated Monday.  Lisa went in in the morning expecting the extubation to go ahead.... when she got in there, Wyatt had a new nurse he has never had before, and a new RT that he had never had before also...  He had had a fine night, but when the new people came in at 7am, Wyatt had a desat to 50... not unusual for Wyatt at all... and they freaked out... .they cranked everything back up on the ventilator, so when Lisa came in, she freaked.  They never called her or anything to say something was wrong, so she questioned what happened... they told her, she told them that this was normal for Wyatt, but it was too late, everything had already been turned up, and there was no extubating him from those settings.  Lisa was very upset with them, and so talked to the Dr.  The Dr wanted Wyatt weaned back down over the day, and hoped to get him to extubatable settings again in a day or so, and then keep him there for 24 hours, and then extubate. 

Wyatt has been very puffy and fluid overloaded lately, and so they have been upping his diuretics again, trying to get rid of it.. but it is a fine line to walk, as the diuretics make his liver and kidney function poor. 

Lisa has also been arguing with the Drs for days on the fact that Wyatt needed a blood transfusion.... they kept wanting to wait, and Lisa was telling them that he needed it, his hemoglobin was low (for him) and his oxygen requirements were going up, instead of down, which, with Wyatt, is a sure sign he needs a transfusion.  They finally gave him one yesterday. 

We were hoping that yesterday maybe he would get to be extubated, only when they did the morning chest x ray, his left lung had collapsed again, so no way are they extubating with that going on.  They don't know if its because of the fluid overload or not... it is possible, so they are trying harder to get rid of the extra fluid.  They also turned up the pressure support a bit more on the venitlator again to try and re inflate the lung... they said sometimes if they catch it quick enough, that will work.  Otherwise, it is just time.  They also adjusted the placement of the ventilator tube in his lung, in hopes to help it a little more.

Lisa said he was a lot more awake yesterday, trying really hard to open his eyes.  He is still not getting them all the way open, but he is doing better than he was.  She said he tried to play with his toy, and also would grab back at her hand, if she let go of his hand.  He was awake alot of the day, and quite a lot in the evening as well.  Hopefully this is a great sign.  His morphine is getting down there, and is at 8mcg now... his food is up to 13mls an hour and 3800 calories.

So, now we have to hope and pray for him for his lung to re inflate, so we can get him back on track for extubation soon!

I will update again as soon as I know more.. hopefully his xray showed some improvement this morning... fingers crossed....

I want to remind everyone once more of the upcoming golf tournament.... we are just over a week away now!  It has been a long 5 months of planning, and I am very excited.  It is going to be a great day, we are going to have some fun, friends, family, food, games, auctions, and so much more.  We have been very fortunate to get many many sponsors and donations.  We still have a few spots for golfers, so I hope that you all could spread the word once more, and maybe get a few more golfers out there.  They can contact me by email at wyatts-warriors@hotmail.com  Help us help Wyatt, Sick Kids, and help raise awareness of Congenital Heart Defects.  Anyone and everyone is welcome.  I need to hand in final numbers by June 4th, so you have until then to sign up and make payment. 
THANK YOU EVERYONE!!

Hello everyone,

I haven't written for a couple of days, because for a change, things have mostly been fairly smooth and stable, and not much to report, which is nice!  Wyatt is down on the ventilator alot, and were it not for the oxygen he is now requiring he would be at extubatable (is that a word?!) settings.  He has been for a couple of days now, his peep and pressure support, but his oxygen requirements have actually increased, which is making it a little trickier in deciding on extubation I guess.  He had been on only 35% oxygen for a few days, but since Friday night his oxygen has been increasing.  He has been back up as high as 70%, and right now is at 50%... Lisa thinks part of this is due to the fact that different Drs have different requirements of him, meaning while some Drs are happy with him satting in the 80's, meaning he would need less Oxygen, others want him in the 90's... meaning of course, more oxygen....    The idea was originally to extubate tomorrow, Lisa is waiting to see if this is still the plan even with the oxygen up, and if it is, then he needs to be started on the steroids tonight, as he has a hard time with extubation.  Though, we are thinking he is trying to extubate himself, as he keeps pulling at the tube, and ends up having to be restrained to stop him.  Of course he does not like that one bit.

He lost his pacing wire Friday (one of them) and they were trying to determine whether they needed to put it back or not, but they left it out, and so far, so good, thank god.

His food is up to 3800 calories, and 13mls per hour.  He is tolerating that well so far, hopefully he continues to be able to increase, and he will put some much needed weight on!

He has been rather grumpy the last couple days, likely because his morphine is down so much now, and they also tried to wean his withdrawal meds, and ativan, all in the last couple days, and he is far more aware of whats going on, as well as being uncomfortable, so he isn't impressed.  Lisa can usually calm him by patting him though, and has been able to have some more snuggles with him over the last few days. 

He is getting physio twice a day now instead of once, and they are getting lots of gunk out of his lungs still.  He still has his pneumonia, but they would reculture again in a few more days (at 10 days on these antibiotics) and see what happens.. also, the type of pneumonia he has, is from being on the ventilator, so hopefully, he can get extubated, and that will help get rid of the pneumonia quicker.    He is more alert now, and trying hard to open his eyes, but doesn't get them open all the way still, and doesn't do it much.  Despite being weaned down on everything, he is still very sleepy.  He also seems to have his days and nights mixed up, and is partying all night, and sleeping all morning and early afternoon away.  Hopefully they can get that straightened out soon.

So, prayers tonight that tomorrow is the big day, and that Mr Wyatt is ready for it, and tolerates it well.  Hopefully then too, he will need a little less sedatives, and will wake up a bit more. 

I will update as soon as I know whats happening with extubation!

Laura

Hi everyone,

Nothing too much to report since yesterday, which is a nice thing!

Wyatt had a fidgety night, and didn't sleep too much, and was even awake from 7am till about noon today as well, when they finally gave him some chloral to get him to have a sleep as he was exhausted.  Lisa is going to talk to them about giving it to him all night tonight, as he seems to be getting days and nights mixed up, and wanted to sleep all afternoon.  Lets hope he gets that turned aorund soon, or he will be all messed up and up all night right in time for him to go upstairs and Lisa be up all night with him ;)

They weaned his vent settings again today, so he is now att 35% oxygen, peep of 6, pressure support of 11.  His morphine went down a little, to 11mcg.  His food is at 12mls, and his calories were increased to 3600 today, and he is tolerating well so far!

The good news for the day is that Wyatt was trying real hard today, and opening his eyes a lot more.  He is still only getting them about half way only, but is keeping them open a lot more today.  Lisa wasn't sure if he was really looking at her or not, or if he could really see her or know what he was looking at, but his eyes were open, and that in itself is a great step right now.  Lets hope he continues to do this over the next couple of days and keeps moving ahead...  With the eyes opening, and the vent weaning!  Still hoping and praying for extubation this week!

Thats about all the news for today, it has otherwise been a fairly quiet day, which is a great thing.

I will update again soon.

Laura

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