Hi everyone,

Wyatt got over his RSV, thank god, and got out of isolation on Wednesday.  He went back to his regular room, and despite the fact that he was still having fevers, and still has the pneumonia, they began discussing the possibility of the cath lab this week.  They finally decided that if he was free of high fevers (over 39) they would take him to the cath lab Monday.... He still had some high fevers over the weekend, so we thought they would not be taking him Monday.  However, Monday morning came, and they stopped Wyatt's food and oral meds at 6am and held his enox dose. The CCCU doctors wanted him to go but Lisa wanted to know what DR. Russell, Linda and Dr. Chetervedie (sp?)  thought about the fevers. So Lisa spoke to all them finally and they all agreed that this may be the best he is. He could get better but likely he would get worse and as his heart gets sicker it is harder for him to fight off infection. So they felt he may become very unstable if we wait and it would end up being an emergency. Which no one wants. Then we had to wait to find out if ansthesia would take him like this, so the original anesthetist would not but Dr. Holtby who usually looks after Wyatt for his procedures (pure luck that she was there) felt the same as the other doctors and she agreed to do it. She was tied up with another procedure until 1:30 and then had to talk to Lisa and read Wyatts chart as she was on holidays. Lisa talked to her, Linda, Dragos who used to be Wyatts fellow is now the fellow in the cath lab (which is good) and Dr. Chetervedie (sp?)  They headed up around 2pm and they took him in at 2:20pm They gave Lisa the usual run down of risks which I won't get into and some extras because of his fevers. They figured he will be in there at least 6 hours. They had to get an iv for contrast, could possibly have had to intubate orally or nasally, sedate, and try to get access the plan was to try the left groin first then right jugular and as a last resort his liver. Generally they dont like to do to much work in one cath, but if his access was a huge issue they would do more at once other wise he would have to go again in a few weeks. They were not sure how well he would tolerate this. We were hoping for the best but they prepared us for him being fairly sick for a little while after.

So Wyatt finished up in the cath lab late last evening. He did very well and was stable throughout, but the 24 hours to follow will tell. Lisa talked to the Dr and the fellow about what they did and found. They dialated several areas and didnt have to put in any stents. They took lots of pictures and measured the pressures in his heart. They are far too high and after dialating the right branch pulmonary artery the pressures on the right side got worse they went from 35 to and they should be like 15. Also they couldnt get to one of the areas that they wanted to balloon because it is not attatched to his conduit anymore (it somehow detached) so the blood is not flowing properly to the right side which means his lungs are not getting enough blood flow. So the branches are dying (called pulmonary artery disease) if this isn't repaired his right lung will die. Last night they kept him sedated with propofol to let him rest and wake him up slowly this morning. The ventilator was breathing for him last night so he could rest. The cath lab doctor needs to talk to Dr. VanArsdell (Wyatts surgeon) to see what he wants to do or can do. The cath lab doctor thinks that doing a surgery to repair the broken collateral would be the best option but also very risky. He figures it would either help greatly or make it alot worse and theirs no way to tell. So now we wait impatiently.  None of this was what we wanted to hear.

This morning Wyatt is off the breathing rate, (so back to breathing on his own) and his vent settings have come down a bit over night.  He is awake now, and seems in a fairly good mood.  We are hoping that the Drs will get to talk today and come up with a plan, and that they can come up with a plan, as obviously the longer they leave this, the worse it will get.  We are not sure how well Wyatt would handle another surgery right now, however, we did not expect him to tolerate the cath at all, and so far, he has proved us wrong, and shown us once again what a strong little boy he is.

Please pray that Dr VanArsdell can work his magic again and fix the arteries, and that Wyatt can tolerate yet another surgery.

I will keep you up to date as we find out more.

Also, please remember that next Friday (13th) is the gala for Wyatt and the CCCU.  This Thursday (5th) is the last day to get your tickets.  Please get in touch with me, by email at wyatts-warriors@hotmail.com or by phone at 289 404 1021.  You don't want to miss this night, we are going to have a great time, we have some incredible prizes and auction and raffle items, and most importantly we are all there to show Wyatt and the CCCU our support when they need it most.  I hope to see you all there.

Laura

Hi everyone,

Well, as we know, Mr Wyatt does not like to ever keep things simple or straightforward.  He certainly seems to be doing better than he was last week, thank god, but he is still not better, or good really. 

There had been talk over the weekend about sending him to the cath lab yesterday, if he had no more fevers over the weekend.  Well, over Friday and Saturday, he continued to have fevers, however, they were lower grade.  Saturday night and Sunday, no fever, so they planned to send him to cath lab Monday.  Lisa was not too sure about this, as he really hadn't had much time to be feeling better, or to be sure he was on the mend, but she agreed that if the fevers stayed away, he would go.  They did another BAL Sunday to see if there was anything else new, and in the morning Monday, they thought they were sending him.. stopped his food and held his enox.  But, when the cath lab Dr came in a little later, he found out that Wyatt's WBC count was still up, and he said no, he would not take him.   There was a lot of discussion, but he wanted to wait for the BAL results before he took him anywhere, and wanted to see his WBC coming down.  There thought was that he may go today or tomorrow.

Then, the BAL results came back, and Wyatt has RSV.... soooo he is now in isolation.    They had to move all his things yesterday ( a very tall task I might add) to an isolation room, where he and another child who also has RSV will be.  We are not sure exactly how long he has had it (we know he didn't have it on his previous BAL) so they are going to do another BAL today.  There is nothing they can do to treat it, as it is a virus, so we just have to wait it out.  They are, however, still treating his pneumonia.  RSV is nasty, and he gets a needle (vaccination) against it, as it is particularly dangerous for kids with cardiac and or lung issues.. and he has both.  Anyone can have or carry RSV, and it can not affect them at all, or may seem like a cold, etc, but for Wyatt, and his cardiac friends, it is very dangerous.  SO once again, let this be a reminder to everyone, if you have been sick, near someone who is sick, if you don't feel 100%  PLEASE STAY AWAY...  We all see how many things Wyatt has contracted the last little while, I hope everyone really takes this to heart, because as much as you want to see Wyatt, it is not worth risking his life, or another child there either.  AND, even when you are feeling great, make sure, wash wash wash your hands, sanitize, don't kiss his face or touch or kiss his hands (as he puts them in his mouth) Because YOU DON'T HAVE TO BE FEELING SICK TO PASS WYATT A GERM.  He really needs a chance to get healthy and get to the cath lab.

We don't know yet when he will go to the cath lab now, but he will at the very least, need to be symptom free.  We were also warned that when he comes out of the cath lab, he will seem even worse for a few days, and that it will take time before we will see him appearing to do better.    The Dr also told Lisa that he may have to go to the cath lab again then a couple weeks later to finish things up, as they can't do too much ballooning at once, but this will depend on what they see when they get in there, and how many areas need ballooning.  It will also depend on access and how that goes. 

Not too much else is new, I think that is enough.  They were supposed to start the morphine wean a couple of days ago, but in light of the fact that he is feeling pretty crummy, and is going to the cath lab soon, it would be rather unfair to toss in a med wean at the moment and make him even more miserable than he already is.  So, they are waiting on that for now.  He is losing weight, and is down to 8.5kg now.

Wyatt not only had his second newspaper article, but was FRONT PAGE of the Oshawa and Whitby This Week papers.... the article is also to be in the Ajax, Pickering, Clarington and Port Perry papers this week.  This is the link to the online article  http://newsdurhamregion.com/article/117673

Please remember the Gala is rapidly approaching, on Friday February 13th.  Please get in touch with me by February 5th at the latest for your tickets.  Tickets are $100 per person and include 5 course meal, open bar, dj, dancing, silent auction, door prizes, and live entertainment provided by Singer Georgia Higgins and Comedian Frank Spadone.  Don't miss out on a great evening of fun for a great cause, with the proceeds being distributed between Cardiac Critical Care Unit at SickKids and Wyatt.   I have a block of rooms reserved at a local hotel for anyone coming from out of town, at a discounted rate.  Email me at wyatts-warriors@hotmail.com or call me at 289 404 1021

Laura

Hi everyone,

So our little man had a pretty decent night over night last night, even went through the whole night without chloral (not typical for him!)   When he woke up this morning, he was looking a little better, and his temp was actually low, because they had been keeping him on tylenol and ibuprofen and ice all night.  The blood thinner levels came back ok, so they planned to go ahead with the lumbar puncture (LP).  The fellow was the one to be doing it, and so they gave him propophol, and a local anesthetic, and made the attempt. Actually, two attempts.  Both times they got a lot of blood, so they were not sure if there was blood in the spinal fluid (there's not supposed to be) or if they were not poking in the right place, or were hitting something else on the way in.   Also, Wyatts spine is apparently curved, which I guess would make it a little trickier.  They sent these samples anyways, and called for an actual anesthesiologist to come and do it higher up on his spine.   The anesthesiologist came and it also took him two pokes, but he got it.  There was a little bit of blood in these ones, but not as much, so they are still not certain if there is blood in the fluid, or if they are just nicking something that is getting blood into it.  For example, because of Wyatt's anatomy, he has many tiny vessels all over the place, where we wouldn't, so it's possible, for example, that they may hit one of those.   If there were in fact blood in his spinal fluid, that wouldn't be very good, and would likely mean there is some bleeding going on somewhere inside him.  At this time, there is no plan to research that further.   We now wait for the results, most of which will take a few days.  They do know that there are white blood cells in the spinal fluid (which, again, there are not supposed to be) but they do not know if they are actually in the fluid, or if this is a contamination from the blood that is in it.   SO, the white blood cells in spinal fluid would indicate meningitis, but that is of course, if they are in fact in the fluid, and not just in the blood thats in the fluid. (I hope you are following me, I am trying to keep it simple!)  Dr Schwartz feels that his lung xray also may be showing a new pneumonia (in addition to the pseudonomis), so they have altered the antibiotics a little tonight. 

I am hoping Wyatt will have a good night, though I am certain he will likely have a very sore back and a headache.  Hopefully they will be able to keep him comfortable and his temp down.   His temp had risen a bit again this afternoon to 38.5, so hopefully they got it back down before it got higher. 

The definate good news for the day is that his medazolam wean is all DONE!  He is off the medazolam as of this morning!  This is great news, and next they will tackle the morphine, though hopefully they will let him recover for a couple days first.

So, we have a couple of days of waiting to do, and praying, and I will let you know what we find out as we find it out. For the moment though, regardless of what the results say, it looks like Wyatt is showing us all once again, what an amazingly strong, brave, fighter of a little man he is, and reminding us to keep fighting with and for him, and to never doubt the will he has.

Laura

Wyatt would like to wish his Mummy a Happy Birthday today.  He is going to try his best to have a good day, and behave himself.

I wanted to let everyone know that they have NOT gone ahead with the lumbar puncture today, as the results of the check on his blood thinner levels are still too high, so they will be holding his doses today as well, and hope to do it tomorrow.  It is likely taking longer to get out of his system due to the fact that he is on so many heavy duty antibiotics, which is causing his kidney and liver function to be quite poor, so they are not processing meds as they should be.  Hopefully tomorrow they will be low enough to go ahead and do the puncture, so that we can get the results and figure out whats next.

Please continue the many prayers for Wyatt and Lisa.
I will update with any new information we get.

Laura

Hi everyone,

As you all know from my last post, Wyatt has been trying to fight something, it seemed, yet all the cultures etc are coming back negative over and over again, with the exception of the pseudonomis, which they feel is colonized due to the ventilator. 
They had started him on an antibiotic finally last week, at the direction of the infectious disease team to treat the pseudonomis, since nothing else was growing, yet he was obviously getting worse.    He continued to have high fevers, and be extremely irritable, beyond consolation.  His vent settings have continued to increase, as well as his oxygen requirements.                          Fast forward to the last couple of days, where, despite now being on day 6 of antibiotics for the pseudonomis, he is still spiking fevers of up to 40.7  He looks terrible, grey color, lips are blue, he is very mottled, and extremely irritable still.  Last night and today he is still having the fever of 40.7.  No one seems to be able to figure out what is wrong.  There only thought right now is that it may be meningitis.   They have put him on 3 heavy duty antibiotics, and are going to be doing a lumbar puncture tomorrow.  It would have been done today, but they need to stop his enox (blood thinner) ahead of time.   For now, they are giving him extra doses of chloral to try and keep him more still and calm, and hopefully this will help his temp to stay somewhat down, though he is getting these temps with ibuprofen, tylenol, and ice on him.   If he has bacterial meningitis, cells will show up in his spinal fluid.  If he has viral, they would not.  Meningitis is very nasty, especially when it is not treated immediately, and especially in a person that is immune comprimised.  It can cause many problems such as hearing loss, learning disabilities, and death.  It all will depend on how long he has it before it is treated.  The lumbar puncture will be done early tomorrow, and we are not exactly sure how long results will take, anywhere from a couple hours to 48 hours.    If it is not meningitis, then no one seems to have any other ideas as to what it could be.   We don't know what the next steps will be if that is the case.   For the lumbar puncture they will give him propophol to knock him out (short acting) and then give him a local anesthetic, and then draw spinal fluid from around his spine.    Lisa will be staying with him for this.  Tomorrow is also Lisa's birthday, so let's hope that this means it will be a good day, with some good news.  Wyatt really needs some right now, as does Lisa.  Please say many prayers for him, that his fever comes down at least to a more safe level.

I will update again when I know something new.

Laura

Hi everyone,

I thought I would give a quick update for anyone wondering what is going on right now. 

Wyatt has not had his cath yet.  They wanted to take him on Monday, but Lisa did not want him to go, as he was very miserable, had been having a fever, at that point for over a week, with no real explanation.  His white blood count and CRP were coming back relatively normal, but everything else was looking like he had an infection.  His secretions are thicker, his vent settings, and oxygen requirements higher.    The Drs on still wanted to send him, but Lisa did not feel right about it, and so he did not go.  Since then, they have still been trying to figure out whats going on.  They keep redoing cultures, have done a head ultrasound to check for major brain bleeds or clots, and have finally started him on an antibiotic, at infectious diseases recommendation.   Hopefully they will help whatever is going on.

In the meantime, he has not been having his mat time or his trache trials at all, as his vent settings are too high and he is far too miserable, needing almost constant consoling.  He sometimes gets to go for his daily walk, but it depends on his mood and his settings.

If the antibiotics are going to help, we should see some improvement in the next couple of days.  If not, we are not sure yet what the next step will be since we still don't really know whats wrong.   We just hope he feels better soon.

They will not attempt booking the cath again until he is feeling better, as Lisa wants him to be feeling 100% before he goes in.  They still have yet to really talk to Lisa about what they will be doing, but we do know they hope to do some ballooning.

That is about all for now, please send Wyatt some get better prayers and wishes so that he can get feeling better soon, and get back on track to go to Bloorview and then home. 

Remember that the Gala is fast approaching, Friday February 13th, at Tosca Banquet Hall in Oshawa.  Cost is $100 per person, and includes 5 course meal, open bar, DJ, dancing, silent auction, door prizes, and live entertainment provided by singer Georgia Higgins and Comedian Frank Spadone.    Come on out have a great night, celebrate Valentines, and help support Cardiac Critical Care at SickKids and Wyatt.  Contact me at wyatts-warriors@hotmail.com or 289 404 1021

Keep your eyes open for an upcoming article in the paper in the next week or so, on Wyatt and the Gala.  It will be in all the "This Week" papers.

Laura

Hello everyone!

I know I have been slow to post again, but as I am sure you have all been too, I have been a busy boy! 

I hope that everyone had a very Merry Christmas, and a Happy and Safe New Years Eve as well!  We had a pretty good Christmas, considering we are still here at SickKids.  We all made the best of it, and it turned out pretty good.  Christmas Eve Day Grandpa and Grandma came to visit, and brought some presents.  Christmas Eve, Uncle Colin came and stayed over with us, and we had lots of laughs.  In the morning, Santa Claus had come of course, and brought me some presents!  I was not as interested in opening them or playing with the papers as I was last year, but I still tried and had fun.  Then Mamma and Babboo came and brought some breakfast for us (well Mummy really) and presents too. After they left, we had a surprise, Dan and Jessica (Emma'-s Mum and Dad) came to visit us, and were joining us for dinner!  So they brought some yummy food, and some MORE presents!  Boy was I getting spoiled!  Then Auntie and Uncle John, and Sean, Eric and Gab all came, with lots more food and presents.  SO, the hospital was very kind and allowed us to have the teaching room for our feast!  Auntie and Jessica got everything ready, and we got ready to eat!  My nurse that day, was Vanessa, and my RT was Steve, so both of them joined us for dinner too!  It was lots of fun, and most of all it was so great to get to spend time with my cousins again!  Something I have not been able to do since the night before my surgery... April 9th, when we went for dinner, before surgery the next morning.... Anyhow, we had fun, I stayed awake almost the whole time!  I sampled some sweet potatoe, turnip, and cheesecake!  I wasn't keen on the sweet potatoe or turnip, but I LOVED the cheesecake!   After we were all done eating and eating, we got to open more presents!    About halfway through that round of presents, I got tired, and started to doze off.  That was alright because it was time for me to go back to my room anyways.   We had lots of fun, and if you take a look, I am posting pictures for you to see! Sofia came down for a visit too, just as I was getting ready to go back to my room, so it was nice to see her too, since I only get to see her Mummy and Daddy now! 

So, the Drs had there meeting, and they decided that I need to go to the cath lab regardless.  They can get a better look at everything going on in there, take pictures, get better measurements etc.  They are hoping that since I am much bigger now that I will tolerate the cath much better this time.  I am sure hoping so too!  I only have one access point left, so that is where they will try to go in from.  If that doesn't work, they can try the liver, though Mummy does not want them to have to do this.  They said that it is more important that I get the cath done now, then to worry about them losing access for next time.  So we can hope and pray that I don't clot this time, but basically, if I do, I do, they have to do this.  They felt this was a better option, and hopefully a more tolerable one, than another heart surgery for now at least.  Once they are in, they will try some ballooning of my left PA, and see if that holds.  If not, they may stent it.  They are going to try dealing with the PA before the bronchus they feel that maybe if they deal with the PA, and the blood flow is better, maybe my heart won't work as hard, and can go down in size, which then in turn may take some of the pressure off the bronchus.  We will have to wait and see for that.   We do not know exactly when I will be having the cath yet, but it will be very soon, like in the next week or so.  Please send lots of prayers my way, so that I have the strength and will I need to get through this again.    This has obviously pushed back Bloorview a bit, but hopefully if all goes smoothly, maybe we will get there in February instead of January. 

Other than that, I have been doing my usual things, though my vent settings have increased again, to the point that I am not allowed or able to do my trache mask trials right now.  I WAS up to 4 hours and 15 minutes a day, but until my vent settings are back down,  I am unable to continue doing this.  We are not sure if this is because I need to get back to the cath lab, or if this is due to the fact that I  seem to be fighting something right now.  Either way, it doesn't look like I will get back to my trache mask till after the cath, which stinks, and hopefully it won't be too big of a setback.   I have been very sleepy, and crabby, and my secretions are thick and yellow, all which indicate something is brewing, however, my white blood count and crp have not been going up, which is a bit odd.  They did blood and bal cultures yesterday, so we will have the results hopefully tomorrow.  We want them before the cath, and Mummy would really like them to put me on antibiotics just in case, as better safe than sorry, when I am going to the cath lab.

That is about all I can think of for now.  I am doing well moving around my bed, trying to roll, and holding my head up.  I like all my new toys, and my new bath. 

I will update you soon with word of the cath.

Don't forget to check out my new pics!

And don't forget to contact Auntie about the Gala soon, it is coming up fast!!

Love,

Wyatt

Hi everyone!

I am sure everyone is busy getting ready for Christmas by now, as I know Mummy and I are!  I myself am getting ready to try a little sample of some potatoe and sweet potatoe, and maybe even some gravy!  I can't wait!  And I am really wondering what Santa is going to bring Mummy and I this year!? 

In the meantime, I have been a busy boy with my usual daily activities of the mat, and physio, and my walks, and I am still busy with weaning down my medazolam, though I am ALMOST done, maybe another week or so and that one should be done!  I had really been being awake alot, but the last two days or so I have been extraordinarily sleepy, so we are not sure if I am fighting another infection or why that is, so they are just keeping an eye on me.  I fell asleep on my mat at mat time the last two days,  and slept very soundly! 

So we got my CT results, and I don't think it was quite what my Mummy wanted to hear.  What they saw was that there are narrowings in the right Pulmonary Artery, the right bronchus, and in the  left bronchus where the stents are.  My lower left lung was entirely collapsed, and there were areas  of collapse all over the place.  The Drs are meeting today to decide what to do, as it is obviously affecting me, as I have been needing more oxygen and my sats have been lower.  The are a couple of things that have been mentioned.  They could send me to the cath lab  and take an even better look and  also perhaps do some ballooning.  The problem with this is  that I only have one access point left to go in  for the cath lab...so if they use that, and I clot, as I always do, they will lose that access point as well, and have no more access for the cath lab.  I also do not tend to tolerate caths very well.  The other thing they will look at is the possibility of another open heart surgery, and the tolerance they think I will have of another one, as well as what they could do there that they could not in the cath lab.  The Drs are having there meeting this afternoon, and we hope they come up with a good idea and plan for me.  This likely means that whatever they are going to do will be in January, and therefore we probably won't be going to Boorview in January after all, as this will be quite a setback for me.  I will be back to higher vent settings,  pain meds again and so on, and we will be back to square one of weaning them all again, whether I have a cath or surgery.  Obviously a cath would seem to be a little less invasive, but again, I don't generally tolerate them well.  So, we wait and see what the Drs have to say this afternoon.

That is about all I know for now, I will update you tonight or tomorrow morning with the news of what the Drs decided.

Don't forget to get in touch with Auntie Laura about the Gala!

And please say a prayer for al the families who are in the hospital with us this Christmas, that we all get our miracles this year, and for all the families who have lost little ones.

Love,
Wyatt