Hello everyone!

Well, it is almost Christmas time again, and I thought I had better update you!  Now that Wyatt is doing better, I am going to go back to writing from Wyatt's perspective, much more fun!

So, we are still here, in CCU, and we have been in the hospital for over a year now, with the exception of a couple of days that we had thought we had escaped last January...  We are pretty bummed out that we are here for Christmas again, and I really really hope that next year, we will get to be home with our family.  I know that we will still have a good time though because we have friends here now, and our family will come to visit...  My Uncle Colin will be staying over with us Christmas Eve, and Mamma and Babboo will be coming down Christmas morning to make breakfast, and then Auntie and Uncle John and Sean and Eric and Gabby will all be coming with a yummy turkey dinner, and we will hopefully all get to go downstairs for that, and my friend Steve, my RT will come and my nurse for the day too, and hopefully some of my other friends too.  I know we will have a good time together.  I am not sure when the rest of my friends and family are coming, but I am sure we will see them over Christmas too.

I have been a busy boy, going on my mat everyday for about an hour, trying to lift my head.  I have been doing very well with it, and when I decide I have had enough I just fall asleep!  I get to go for walks most days, as long as the Nurse and RT are both able to come with me.  Sometimes if the RT is not available, we still go for a smaller walk just around the Unit.  Last weekend I got to go for a walk with my cousins, Sean and Eric, which was really exciting, since I really haven't been able to visit with them since last April.  They were pretty excited I think and took turns pushing my stroller. 

I am still working on my medazolam wean, but I am getting down there pretty good.  At the same rate, I will be off the medazolam in 2 weeks.  The next one then will be the morphine, and then clonidine.  I am doing pretty good with it, I get a little cranky sometimes, but overall, I am handling it quite well. 

I have been having some trouble with my eyes, and so the eye dr and the plastics people came to see me.  I had been itching5 my eyes like crazy and they were getting goopy etc, but there was no infection.  It turns out because my cheeks are so chunky now, they are forcing my bottom eyelids to turn in, which of course is very irritating, and why I am itching at my eyes like crazy. Plastics suggested surgery to fix it, but Mummy said no, as once my cheeks go down a bit, this SHOULD correct itself.  She did not think I could tolerate another surgery right now, especially when it is not necessary.  So, for now they put a cream on my eyes to help with the itching so that I stop scratching up my face!

I am up to 3, yes 3 HOURS A DAY on my trache mask, which means OFF the vent!!!!  They continue to increase the amount of time every couple of days in 15 minute increments, and they are hoping to have me able to stay off it all day and only need it at night!  This would be great!!! 

I had my echo late last week, and Dr Russell wants me to have a CT scan to get a better picture of my heart, and what is going on in there right now.  That should be happening in the next couple of days.  We know that there is some narrowing, but she wants a better look.  Mummy is hoping that they will also take a look at my airway etc while they are there.  We will keep you up to date when we get results. 

The plan right now for me seems to be that the end of January should be when I move  to Bloorview, provided all things stay on track as they are.   My new stroller should be here any day now for me to try out, and I am excited about that.  My family is still doing trache training every week, and I am still behaving beautifully for them every time!  I am fighting my usual pseudonomis infections as well as a couple other things, but seem to be past the worst of these ones, and am not feeling too bad.  I am awake a lot now, and keeping my Mummy very very busy.

I am sad to say that we lost another little one of my room mates this Sunday past, Jayanna.  She was a very sick little girl, 8 months old.  We are thinking of her.

Since it is the Christmas and cold season, we would like to remind you to please stay away if you are sick, or have been around anyone who is sick.  Little ones like me are very fragile and cannot afford to pick up any more germs.  The general rule is 2 weeks of healthiness before you can see me!  We love to see you, but it's not as important as me and my roommates staying as healthy as possible!  And, in keeping with that, lets also remember that I am in the Critical Care Unit, and that visits are great, but only 2 people are allowed at a time, and we need to keep it to family and our close friends.  Everyone else can meet and visit with me when we go home!  It is for all of the kids here health!  We know you understand!

That's about all for today!  Please remember that my Auntie is planning a Gala for February, for me and the Critical Care Unit that has taken such amazing care of me.  She is working really hard, and she wants me to tell you that she promises you an amazing fun evening!  There is going to be a singer there, Georgia Higgins, and the comedian, Frank Spadone!  You won't be disappointed with the 5 course meal, open bar, or silent auction either!!  Please come out and have a great time, while helping all of us CHD kids!   It is $100 per person, and you can contact my Auntie  Laura for more information at

wyatts-warriors@hotmail.com or 289 404 1021.

She would also like to tell everyone, that there are two wonderful people, Jack and Abby, who have a jewellry store, in the Whitby Mall, called GRAZIELLA FINE JEWELLERY.  These wonderful people are taking part in our gala by donating an amazing silent auction item, but even more important than this, they have been so amazingly kind, and set up a donation box in there store, for me, and whatever gets donated through that box, they are going to match, and also donate!!!!    They sent out cards to all of there customers to tell them about it, and we are SO greatful to them.  PLEASE, if anyone wants/needs jewelry, go see them, because not only do they have beautiful jewelry, but they are beautiful wonderful people, and we would love to help them out the way they are helping us.  Please give them your business.  You are also able to purchase Gala tickets through them.   There website, if you'd like to take a look, is WWW.GRAZIELLAFINEJEWELLERY.COM  please take a look, they truly do have beautiful stuff.

That's it for now, I will update again when we get my CT scan results.  Have fun getting ready for Christmas!

Love,

Wyatt (and Auntie)

Hello everyone!

Well Wyatt has been a very busy boy growing as you can see from his new pictures and his new growth chart entry!  When I looked back, he has grown 3 inches since April!  What an amazing feat for a little man in the CCU!  And of course he has gained SO much weight, he is a big boy now, weighing in at 19.4lbs!!!  Remember before the April surgeries, he was barely hovering around the 10lb mark!

He has been going for daily walks (most days at least) and they still go for there stroll downstairs, and then up to 4D to visit our friend Sofia.  They still have to take the RT and Nurse with them, but at least they get out!  He has been trying out a stroller that the hospital has, while he is waiting for a special one just for him to come.   The seating lady (yes, that is all she does, figure out seats for little people like Wyatt :) ) came from Bloorview to see him the other day and take all his measurements in order to order his custom stroller.  They are first trying one called the Cuddlebug, and it is specially designed to keep him sitting in proper posture and comfortable for him with his trache.  It will also be modified to hold all his equipment, and can be modified further as he grows and his needs for support change.  It will have a head rest etc for now, untill he learns to hold his head up.   It is expected to be there in about two weeks for Wyatt to take for a spin.  If this one works out well, they will keep it, if not, there is another one for them to try.  They must be very special, because you could buy a used car for what they cost!  The base models start at $5000, and that is with no customizing!   We joke that maybe we will send it to the Pimp my ride show lol.

He has been doing really well on his mat every day as well, they are working with him to lift his head, and trying to teach him to roll over and play with his toys.  He really likes the mirror and looking at himself.  Typical male.  Haha.  He is doing well with reaching and following.  They spend about an hour on the mat every day, and then he still has his regular chest physio 3 times a day.

He has been doing trache mask trials, which are time off the ventilator, with just a mask with oxygen over the end of the trache.  Same idea as if you or I were to get an oxygen mask at the hospital, only ours would go over our face.. his goes over the trache.  He started out at 10 minutes a day, and has now worked himself up to AN HOUR AND A HALF PER DAY!!!!  This is awesome incredible super great news, as they continue to do this every day and hope to work him up to tolerating more and more time off the ventilator.  If they can get him to tolerate being off even a few hours a day, this would make some things much easier for them at home, like a little bit more freedom a few hours a day!  This is a big accomplishment for Wyatt!

He has had many trache changes now, and gets cleanings every day, and he is truly such a trooper through it all, and quite often even falls asleep during it.  It is well established now, and looking better than it was.

And one more important exciting thing to tell you, WYATT SMILED AT LISA!!!!  On Monday night, after bath, Lisa was putting his cream on him and kissing him up as she usually does, and he smiled at her!!  We are so super excited about this, and now impatiently waiting for more! 

That is about all the news I have for now, for those who have asked me about Christmas for Wyatt and Lisa, as it is really difficult to know exactly how much longer they are going to be there, and then how long in Bloorview, the honest to goodness best thing you cold give them this year, is gift cards.  I know that is not very exciting to some people, but honestly, they can really use them, and especially in Wyatt's case, where we don't know how big he will be and in what season they will be getting home etc, to buy him clothes would be rather difficult, plus it is hard for people to remember the restrictions there are even on clothes for him because of his trache and vent and feeding tube.  As for toys etc, the Drs and therapists are going to be very specific as to what they want him using and playing with, in order to really encourage development for him.  So please, gift certificates would be great for this year!  Thank you!!

Again, I would like to remind everyone about our upcoming Wyatt's Warriors Have A Heart Gala, Friday February 13th, 2009 at Tosca Banquet Hall in Oshawa.  The cost is $100 per person, and includes a 5 course meal, open bar, dj, dancing, silent auction, raffles, a live singer and a fantastic comedian!!  You won't be disappointed!  We are also very thrilled to have some of our local dignitaries attending our event, and wish to thank them for there support!  Also, for anyone attending from out of town, I do have a block of rooms reserved at a hotel nearby, so please, contact me for the confirmation and booking numbers you will need!  Please come out for such a great evening, we are going to have a great time, and it is for such a great cause.  Please spread the word, and help us raise awareness of Congenital Heart Defects and money for the Cardiac Critical Care Unit at SickKids as well as our little Wyatt.

Laura

Hi everyone!

Sorry for the delay, and thank you for all the hate mail LOL (kidding).  Please, from now on, if there is no update, assume that things are pretty status quo... If there were anything majorly wrong, I would update.  I have just been crazy busy with the Gala etc, and Wyatt has been doing ok, so this has taken a back seat a bit.  SORRY....

Wyatt has been doing pretty good... Aside from the fact that he is still, or again, fighting pseudonomis, he is doing pretty well.  He is on antibiotics again for the pseudonomis, as it grew in his lungs and also at his trache site.  His trache site has been alot goopier than usual because of this, and he has had fevers for the last few days.  Hopefully the antibiotics will kick in soon, and he will start to feel better.  Add to that the fact that they are now weaning his medazolam every 48 hours, and he is a wee bit of a cranky pants.   However, they still are continuing on with the wean as it needs to be done, and he really isn't doing so badly with it, just a bit fussy. 

He has been having physio mostly every day, down on the mat on the floor, with Jamil and with some toys, trying to teach him to hold his head up and roll over etc.  He is doing pretty good with that, though he does not like tummy time at all.   He has been going for walks most days as well, and they are down to just him, Lisa, and the RT and Nurse who need to go with them.  They usuall go for a stroll down to Timmy's or Starbucks, and Wyatt often falls asleep.

He has tried baby food several times now, and does ok with it, though he doesn't take very much, usually less than 10mls a day, and he has aspirated on it a couple of times.  Overall though, it is really good that he is taking it, and the main reason they are doing it is to keep him interested in oral eating.    His feeds otherwise are going just fine. 
He is enjoying as usual, his Backyardigans movies and Baby Einstein movies.  He is back to enjoying somewhat of a normal bath, though of course with the trache he cannot be submerged. 

All of us have been busy trache training, and I think now most everyone has had the opportunity to suction him.  A couple of us have had the opportunity to do the cleaning, and I have had the opportunity to actually change the trache itself.  We will continue to practice and train until Wyatt goes home. 

I want to remind everyone again about the Gala, and to please sign up ASAP, as seats are limited, and we really want you all to come out!  I am super excited, we have some excellent sponsors and donors, and I am very  pleased to let you know that our Mayor of Whitby, Pat Perkins herself, is participating in the Gala!  We have some incredible prizes and auction items, and some fantastic live entertainment.  I know it is going to be an awesome night!  The details again are:

Wyatt's Warriors Have A Heart Gala                                                     Friday February 13th                                                                          Tosca Banquet Hall                                                                       Cocktails 5:30pm  Dinner 6:30pm                                                              5 Course Meal,  Open Bar,  DJ,  Dancing,  Live Entertainment,  Silent Auction,  Door Prizes,  And More!!!                                                                        $100 per person

Supporting The Cardiac Critical Care Unit at SickKids and Wyatt

Please come out and have a great time for a great cause!!!

Sign ups, questions, etc can be taken at wyatts-warriors@hotmail.com or by phone at 289 404 1021  Also, if there is anyone out there wanting to donate to the auction, or be a sponsor, please call or email me as well!

Thank you everyone!   And don't forget to check out Wyatt's new pictures in the Fall 2008 folder!

Laura

Hi everyone,

Just thought I would do a quick update.  Not too much to report, but a couple of exciting things!

Well, on Friday, Wyatt got to try eating with his trache!  This is the first time he did it, and he had apples and blueberries (baby food) and he did quite well.  They hope to continue to do this (not necessarily every day though) to keep him interested in eating by mouth, and also to teach him swallowing etc, which is obviously more difficult to do with a trache.  WAY TO GO WYATT, WE ARE SO PROUD OF YOU!!!
Saturday night, he decided to take his own trache out in the middle of the night, while his nurse was on break of course.  Luckily, they were able to get it back in right away without any trouble.  Now, however, I imagine from the trauma, his airway is more swollen again, so there is no leak or space around the trache right now like there was before.     
And on Monday, Wyatt got to take his very first "pleasure" walk out of his CCU room!  They put him in a special stroller, designed to hold him in the proper position with his trache, and carry all the trache gear... the vent, the oxygen, the suction machine, the feeding pump, all the emergency supplies etc, and with a crew of about 8 plus Wyatt and Lisa, they strolled around the Critical Care Unit.  Wyatt must have enjoyed it, as he fell asleep.  Hopefully they will be able to do this more often now, and get him something more to see than the same 4 walls he has been staring at for 7 months now.  YAY WYATT!!!
They started him finally on antibiotics, but we aren't sure yet if they are helping or not.  His oxygen has come down a little bit, but not enough yet, and his other vent settings are still up.  Dr Russell was going to look at his last two echos and see if there was anything that appeared to be changing and would warrant another look in there. 

That is about all for now with Mr Wyatt,  I just want to remind everyone that we are planning Wyatt's Warriors Have A Heart Gala, for February 13th, 2009  At Tosca Banquet Hall in Whitby, Ontario.  Cocktails are at 5:30, dinner at 6:30.  Cost is $100 per person, and includes a 5 course meal, open bar, DJ and dancing, live entertainment, a silent auction, raffles, door prizes and more.  I hope to see everyone out there showing there support to Wyatt and the Cardiac Critical Care Unit at SickKids.  Please register ASAP as seats ARE limited.  Bring your Valentine, your friends, anyone is welcome, and the more the merrier.  Please contact me at wyatts-warriors@hotmail.com or call me at    289 404 1021.  

 Hi everyone,

Sorry I have been so long, but we as a family have had lots going on, and things have just been chaotic.  We had a death in the family, our Nana, and then some other things, so I just haven't had a moment to sit down.  My apologies to all those giving me trouble for it.

Wyatt has been doing pretty good overall.  He has had a couple of trache changes now, and while it is still pretty raw looking, it is doing alright.  Wyatt does not like the trache changes very much,  although, sometimes, somehow, he manages to fall asleep during them!   His trache will now be changed once a week, and it is cleaned daily.  Lisa had to clamp his bear in such a way that he cannot get at his trache, because he keeps trying to pull at it and the vent, and disconnecting himself.  He is getting back his regular little attitude and personality!  They have been working on taking him off the vent for short periods of time for the last week, just 10 minutes a day, but he has been doing really well with it, so slowly they are going to work up on how long they take him off for each day, to help to rebuild his muscle tone and ability to be off the vent, hopefully for at least some of the time.

They have been working on weaning his meds, and he is now completely off chlorpromazine.  That wean went really well, he was a little bit cranky sometimes, but nothing too major, and he is now really awake a lot of the time.  It is really nice to see him so awake, and he is very alert and looking around and watching Backyardigans and Baby Einstein.  He is not very impressed when you stand in front of his TV!   They are trying to get him off the IV Amiodarone, but that is not going  so well.  They added an oral dose as well, but it is having no effect at all.  They are supposed to revisit that today, and decide what to try next, as he cannot go home on IV Amiodarone.  So, he needs to either tolerate an oral dose, or they will have to try other meds.  They were hoping to still be abe to use Amio as it is the least offensive, but that may not work. 

He is growing like a weed, and is now completely off his TPN and Lipids, and completely on food.  He is getting 27mls an hour now.  He is up to 18.8lbs!!!  He looks great and it is really nice to see his cute little face without all the tubes and wires and tape!  His cheeks are just massive!  He has 5 teeth on top and four on the bottom, which he tends to like to grind alot.

The last couple of days he has become increasingly more irritable, and no one seems to know why.  His vent settings have been on the rise, and so have his o2 requirements.  He is still awake alot, but very miserable when he is, whereas a week ago, when he was awake he was generally pretty happy.   He does have psuedonomis, but they feel that it is colonized to his tube, and therefore are not treating it.  None of his other cultures have come back with anything.  Lisa has been asking for an echo then, seen as they don't feel it is an infection issue causing the changes, yet no one seems to be in any rush to even take a look to see if it is a heart issue.  She is getting really frustrated, as there is very obviously something that isn't right.  We will have to wait and see if she gets anywhere today. 

We have all started our trache training, and are learning how to take care of Wyatt with the trache, and the trache itself.   It is very interesting.  Lisa is way ahead of us in her training, as she gets it several times a week, and now takes part in cleaning the trache and in suctioning Wyatt.  Wyatt does not like it when Mummy does it, he doesn't understand why she is doing it now, when it is supposed to be the mean old nurses. 

There have been some issues with his calcium now since coming off the TPN and Lipids, so they are working on straightening that out, as it has been low.

He was losing all of his hair, even eyebrows and eyelashes, so they did alot of bloodwork, and a spleen scan, to find an explanation for it, but they have not found one yet, all blood work came back ok, and spleen scan was good, so they are thinking it may be just related to stress, and it is already looking like his eyebrows are coming back, so hopefully it was just a temporary thing. 

I know there is more to update, but I will wait to hear how today went, and then fill in the blanks when I go back over everything with Lisa, I just figured I better do an update before somebody killed me for not doing it.

For anyone that hadn't noticed there are new pics of Wyatt on here now.

And to let everyone know, we are having a Gala, Wyatt's Warriors Have a Heart Gala on Friday February 13th at Tosca Banquet Hall in Whitby.  Cocktails start at 5:30pm, dinner at 6:30pm.  There will be a 5 course meal, open bar, live entertainment, DJ, dancing, silent auction, raffles, door prizes and more.  The cost is $100 per person. We hope to see everyone out there, showing your support to Wyatt and the Cardiac Critical Care Unit at Sick Kids.   Please pass along the information and invitation to everyone you know, as everyone is welcome, and the more the merrier.  I can take questions or sign ups at wyatts-warriors@hotmail.com 

Thank you!

Laura

Hi everyone,

Just thought I would do a little update.  Not too much new going on right now, Wyatt is just being kept sedated for the most part still as Dr Forte does not want him moving around still as to let the trache site continue to heal.    Dr Forte said he will "probably" do the first trache change at about 3 weeks.... Usually it is done at 1 week, but we know Wyatt, and he likes to take his time.  In the meantime, they are working on some other things, like working up on his feeds... he is at 15mls/hr now, and 3700 calories, and he is tolerating that fine so far.   They are starting to wean some of the meds he has been on for a long time, like Chlorpromazine, which now he is just pretty much on because he has been on it so long, and is really doing nothing for him now, so they are going to wean that every 72 hours, as well as weaning the medazolam.   There are many unkind long term effects of the meds, so we need to get him off of them.  He is on more morphine for the pain right now.  He gets boluses of morphine and or chloral for when he is unconsolable.   He still has quite a leak around his trache, and so his vent settings are set quite high, but he is not really getting all that it appears he is.    His o2 requirements are up as well, and this seems to be because he is unable to cough, seen as he is sedated, so he can't cough up the secretions from his lungs high enough for them to be able t suction them all out, so they are building up in his lungs.   This has caused some collapse in the left side again, and also is meaning he is needing more oxygen. His sats have not been great.

He got a blood transfusion on Tuesday, which seemed to help his sats at first, but now he is growing a new pseudonomis infection, and his sats have been worse again.  He is on antibiotics, but clearly not the right ones, so they are just waiting for the sensitivity tests to come back to change the antibiotics, hopefully today.  He was looking very pale last night.  They also took a urine sample to culture it too and make sure there was no infection there.

They have had a little bit of troubles with his line again, first it was not working, and then they got it working, but it is sluggish.... they have not checked it, but we are thinking it probably means another clot.   Also, Lisa had noticed that his sats were picking up a lot crappier on his left foot than they used to... so, now she is wondering what is going on in his leg, as this used to be the most accurate reading, so she was going to ask Dr Schwartz today about checking for clots etc. as this was the leg that they had put the femoral line in the other week when he lost his other line, so possibly a blood clot there as well?  Hopefully not. 

I think that is about all that is going on right now, just more of the waiting game.  And getting this infection cleared up again.

We are looking forward to our Casino Rama Bus Trip on Saturday, we are looking forward to seeing everyone there!   There are still a few spots left for anyone who wants to sign up last minute, just contact me at              wyatts-warriors@hotmail.com   It is $30 per person, and includes your bus ride there and back, and a buffet dinner.    Anyone is welcome as long as they are 19 or over!

I will update again soon,

Laura

Hi everyone,

My apologies for being a wee bit slow lately, but as it can imagine it has been a tough time for all of us.

I will be attending Emmas' funeral tomorrow it is at 11am in there hometown of Alliston.  Our thoughts and prayers continue to be with Jessica and Dan and there extended families, and we ask you to keep them in your thoughts and prayers as well through this difficult time.  Here is the copy of the obituary from the Toronto Star...

ROBSON, Emma

ROBSON, Emma Diane  Passed away on Friday, September 19, 2008 at The Hospital for Sick Children, Toronto. Beloved daughter of Dan and Jessica. Loving grandaughter of Susie and the late Neil Robson, Betty Meeker and David Meeker. Loving niece of auntie Ashley and funcle Brett. Emma will be sadly missed by all who knew and loved her. Funeral service will be held at W. John Thomas Funeral Home, 244 Victoria Street E. Alliston on Thursday, September 25, 2008 at 11:00 a.m. In memory of Emma memorial donations to SickKids Foundation (Cardiac Critical Care Unit) would be appreciated

Wyatt himself, has been a busy boy...  Friday night he decided to pull out his GD tube (feeding tube)...  Big problem, for obvious reasons!  Well, of course, at this point, everyone had gone home already, so they put in a foley catheter tube, just to keep the hole open.  IGT was to look at it and fix it Saturday... well the gentleman (I use the term loosely) who came in was the same "gentleman" who refused to ever give Wyatt a GD tube to begin with... that said, he refused to fix it, and saying he had nothing else to do, went home...  Wyatt is still not eating of course at this point, as you cannot feed him through a foley catheter!  They were giving a few of his meds through it, but this was also a big problem, as they don't go through it well, and they can't put all the meds through his PICC line, as these are not meds for that, and of course beyond that, some meds just aren't compatible with others... that said, his foley got blocked....  Out that one came, and in goes another one... Lisa was getting very frustrated, and Wyatt was cranky.... gee, maybe hungry??    Anyhow, finally Sunday morning, someone from IGT had to come in for another emergency, and they said they would fix Wyatts' tube as well...  Thank god... Back on track in that department.. he is eating again, and has not pulled it out again thank goodness.. Little turkey.  So, his food is slowly increasing, his calories were left at the 3800, but he had to start over at 2mls/hour again, after not eating for a couple of days. 

He was on standby and supposed to get his trach on Monday... They had stopped his feeds again very early Monday morning in preparation, but as the day wore on, they kept waiting and waiting, and well, he didn't get his trach Monday... so they restarted his feeds, and wound up booking the trach for Wednesday morning (today) at 8am.   

Yesterday was fairly uneventful to begin with, though he was extremely cranky, and they were having a hard time figuring out why.  He has been needing chloral a little more often than normal again the last couple days,  but it has been kind of unclear as to why...  Well, Lisa noticed yesterday afternoon that his stomache was all wet... couldn't figure out why, and they were thinking maybe his feeding tube was leaking a bit still...  Then, he is soaked again... so they check  his PICC line, at the lumins, and it is wet.... they wrap gauze around it to see if it is that or the feeding tube, and within a few minutes it is soaked.   They inspect it, and his PICC line is cracked.  His TPN and Lipids, Morphine, Medaz and Amiodarone have not been getting to him, at least not in the quantities they are supposed to.. he is wearing them instead...  Would likely explain a lot of the crabbiness....  SO, then the concern of course Lisa immediately has is that he has not been getting his Amiodarone, which is the med that controls his heart arrythmias.  She made sure the Drs on were aware how quickly his arrythmias got bad when they tried to take him off it before, and of the fact that they had no idea how long he had not been getting his Amio.  Sure enough, the arrythmias soon started, and his heart rate was all over the place, up as high as 228, and just jumping all around.  They bolused him a dose of Amio, and it calmed down a bit.  They were trying to decide what to do about the line....  They could attempt to fix it, or just put in a new line...  Well, the person that can fix the lines, by this time, was, of course, in classic Wyatt style and timing, gone home... that left putting in a new line... The whole issue with putting in a new line all along has been that Wyatt has clots all over the place, and they only had one access point left without a clot, that they did not want to use, as they need somewhere for access when he goes to the Cath Lab.. this was the only spot left.   They poked him at least 10 times trying to get an IV in, and finally did, but only one, and not a good one, and they could only use it for one thing... Not all his meds and TPN and Lipids could go through one line, and there was no way they were going to get another IV in... They tried and blew a vein in his arm, and that was that.   The decision was made to put in a femoral line, not really what they wanted to do or were hoping for, but the fact remained that they needed access for meds, and to take blood etc.  Also, there was no way they would do the trach surgery this morning without an access point for meds and bloodwork etc.   So they put the femoral line in, and left his PICC in as well until they could get the proper fixing person in today.   The femoral line, was in, but not very stable, as the artery is very tiny, so in fear of him moving around and blowing it, they decided to muscle relax and sedate him for the night.   He had a fairly stable night, all kept muscle relaxed and sedated, and waited to see what Dr Forte would say about doing the trach now, having had all this go on last night, seen as the last thing he said to Lisa was that as long as he had a stable night, he would be going in the morning... 
Anyhow, he came in, and based on the fact that he had been stable, muscle relaxed all night, they decided to go ahead and do it.

They took him in about 8:15am, and it really didn't take too long, about an hour and a half.  They managed to coordinate with IGT and take him right from the OR to IGT to see about his PICC line.  The person who fixes them was there, and was able to rewire his original PICC... which means that they slid a wire into the old one, slid the old one out, and a new one in over top of the wire, and then pulled out the wire.  When they did this, the clot that had been there, was gone.. .It didn't come out with the line, so this means that it either disintegrated when they gave him TPA at some point since they last looked, OR, it broke up and moved.  Its preferable that it disintegrated, but the Drs also feel that if it had moved somewhere bad, we would have known by now, for example, he would have had a stroke or something by now.  If it didn't disintegrate, the best place it could have gone, is the lungs.  They will not be doing anything to look for it, as he has clots everywhere already.    They will take the femoral line back out once they are sure the new PICC line is working fine, both in giving meds and drawing blood etc.  The hope is that since it isn't going to have been in very long, he hopefully will not have formed any clots, and they won't have lost there Cath Lab access.  The sooner they get it out, the better that chance is, so I believe that once they get confirmation that the line is working properly, they will take femoral line out.

As for the trach itself, it is in now.  The surgery went fine, and he remained stable.  They are a little concerned with the thinness of his skin, and the stitches.  They would ordinarily leave them in and change the trach after a week, but because of the thinness, they will wait longer (typical Wyatt again) and likely leave it for a few weeks before attempting to change it.  He has a large leak around the trach as well as around the vent.  This is not ideal, but they didn't really have a choice.  There was a bigger trach they could have used, but given the damage that is already in that area, it was better to use the smaller one and have the leak, then to irritate the area more with a trach that would be rubbing right against it all the time.  They also know that there will be some swelling, so the hope is that there will be enough to get rid of some of the leak.    This is something that they will have to monitor.  His blood gases have been good since, and he is on 45% oxygen currently, and satting high 80's.  He is just coming out of his muscle relaxant, and is crabby, so Lisa was going to ask about increasing his morphine a bit more, as he is likely in pain and discomfort from the surgery.  He was sleeping with his mouth wide open, which apparently throws the ventilator right off, but is not something to be concerned about.  He is still also on a breathing rate, but Lisa was going to talk to them about turning that off as well because many times that irritates him alot as well.   
They have restarted his food again after stopping it at 2am in preparation for the surgery, and he is back to 2mls an hours again.

That is about all I know for now, I will update again soon and let you know how he is doing with his new equipment..  Prayers for him that the new line works fine, and that the trach does what we need it to do, and he can start taking some steps forwards, and less steps backwards. 

Lastly, the Casino Rama Bus Trip is just over a week away, so there are some spaces still available on the bus if anyone is interested, please contact me at wyatts-warriors@hotmail.com   We look forward to seeing everyone out there!

Laura

Oh, one more thing, just for everyones information, here are the hospital visiting guidelines...  Please keep in mind that these are the very basic guidelines, and that different guidelines may apply on different wards/units and different for different patients, based on there status / medical situation...  For example, being in the Critical Care unit, guidelines are going to be far more stringent than elsewhere... Even the number of visitors allowed is different.

Visiting

General guidelines   Visiting hours are from 11 a.m. to 8 p.m. Visitors need to check in with the clerk at your unit’s information desk first. Some units have special guidelines. Parents are welcome to visit at any time of the day or night (24 hours a day).    If you visit after 7 p.m., please use the Atrium entrance. Your child can have up to four (4) visitors at one time, including parents or guardians. This may vary on each unit. Please ask the unit nursing staff how many visitors are allowed. Some areas of the hospital have different visiting policies.  Please respect the wishes of the parent(s) and trust that they know there child and understand the delicacy of there specific situation, better than anyone else. Please remember to wash your hands or use hand gel sanitizer before and after visiting your child. When your child is admitted, the information clerk or the nursing staff on your child's nursing unit will ask you to complete a Family Identification badge. This ID badge will include your home unit, and your first and last name. For security purposes, you are asked to wear the ID badge and carry identification during your child's stay. Make sure your child knows when you are leaving and when you will be back. If you find it hard to leave your child, talk to your nurse. He or she can help make leaving your child easier for both you and your child.   Healthy visitors only, PLEASE!   Do not visit the hospital if you are sick or have been sick or have been with someone who has been sick in the last week or two(depending on unit/child).   The nursing unit will ask questions to make sure that visiting children under 12 years of age are free of infectious diseases. Visitors under the age of 12 will be checked to make sure they are healthy and will be given a "badge of good health" sticker. Children who do not receive a "badge of good health" may be asked to visit when they are healthy again.   Family members and children over 12 years of age should check themselves for the following symptoms before they come to the hospital: a fever a cough  shortness of breath diarrhea or vomiting / nausea runny nose/sneezing rash sore throat ear ache unexplained headache general unwell feeling If you have these symptoms, PLEASE stay home.   Reminder Clean hands! Please wash your hands with gel sanitizer whenever you visit your child