sorry....its been a few days

But there isn't much to talk about. As usual I've been stuck in hospital with Yale... there has been some discussion about the duration of his antibiotics because of the infection he got in his picc line. Now I think they have come to a conclussion that if Yale has two stable FK levels than we'll be allowed to go on Monday...now "Go" doesn't mean go home... just go from the hospital...

Yale had his biopsy yesterday and the biopsy looks good as well as his PAs... but there was some narrowing of the SVC (the take down from the glen) Its just something I'll watch for and they may have to do some balloning and stenting during his next biopsy...*shrug* really everything is just details,.. Yale is great... hilarious eating and play and crying.... still a very raspy voice so it'll be a very quiet spring :) not that I mind... I just want to get back to some normalcy....I haven't slept in my own bed since October.... Ugh... and I just can't wait to have that again.... but it will come.... I hope everyone has a GREAT new year...I know we will!!!! And Yale turns ONE!!!! on sunday! YIPPEE!!!!!! we made it!.... but there will be no big celebrations for us here in hospital... you just can't do it up right when there is nobody around... just me and him...*shrug* I think thats all that matters really though... we all know how hard he has fought to make it this long....
until next time......

quick update

So After Heather's visit yesterday Yale spike a fever...grrr.... luckily it is just a bug in his picc line.... but that means a round of antibiotics...so it was an optimistic goal for friday...but now we're moved to tuesday... which is fine with me... figures that the trouble wasn't over with that darned picc of his.

Yale also had a feeding study done today... and he will require thicked formula until his vocal cord works... he's not an "aspiration" risk... but there was one little trickle they saw...and so better safe than sorry....and his swallow was much more cleaner when we thickened his formula with some rice cereal... no biggie...

The biggest change is Yale's personality....Wow is he ever in good spirits now that the drainage tubes are out... OMG... Its shocking really

And a quick thank you to the Jobes and the Mitchells for Yale's gifts... they're great and unnecessary.... but they sure make him smile :)

pictures as promised

So the wireless connection at the RMH drives me bonkers... so I'm just going to link you to facebook photos okay :)

http://www.facebook.com/album.php?aid=89549&l=fe020&id=517516211

Enjoy!

waiting for a bed....story of my life...:)

LOL... just like there was no room at the inn.... there is no stepdown bed for Yale...:)

He is ready and willing to head up to stepdown on 4d, all his lines are out (except his picc of course) and he's just on some lipids and heparin and his isoproterenol (to keep his heart beating quickly) yup...thats it folks... to think5 days ago he was one sick little boy and even thinking about shutting off his milrinone would make me gasp. They shut it off this morning and gave me the honor...:)

he's still quite sleepy but he's been having a mild reaction to his oral morphine and so they give him benadryl to stop the itching... but the benadryl knocks him out...:)

his cry is VERY quiet.... but it was after is glenn.... so I'll just enjoy the fact that once he hits a certain volume his voice cuts out.... Dr Calderone is still quite worried about it, but its not having an adverse effect on Yale's swallowing... so he's less concerned that it will cause any major problems other than a hoarse voice. Other than that, theres nothing to report.

My laptop is coming tonight so I'll be able to upload some pictures shortly...

extubation...and a pink tongue

So Yale was extubated today... so far so good... he has had a few episodes where he succumbs to his secretions and needs a little help.... but so far so good :) Its so strange now when he cries that his eyes go all red.... he used to just turn blue and then go white... it's pretty cool... He it totally fine neurologically... grasping at sponges and he gulped down the wee 10 mls he was allowed to have to eat today... and is willing to take his meds orally. What a little champ he is... in between dozing from the morphine and crying because he needs another dose of morphine... he has been a happy little guy... a little more irritated than usual...but the guy just had a heart trasnplant and now they're barely feeding him.... you'd be irritated too!

Everyone warned me that it would just be different this time... I was expecting him to be sooo swollen and to take a long time to become active again... but here we are three days post op and he's practically jumping out of his crib... :)

Seriously... WOW... its all I have to say..

The good news

Okay....so frustratingly, yesterday I took time away from Yale to come and update... and the darn computer lost what I typed and they were soooo slow I just gave up....:) but now here we go!
Yale is great... his color is great, his bloodwork is great and he is all around doing great :)
It was a long day of 13 hours until we could see him again after we kissed him goodbye. Anne Dipchand came and let us know around 5pm that the heart was in and functioning better than expected, and that they just needed to stop the bleeding.... it was another 3 hours before we got to speak to Dr Calderone...and let me tell you every terrible thought runs through your head when you think it shouldn't be very long. Anyhoo Dr Calderone came to see us shortly before 8 am. He said Yale's surgery was laborious (what heart surgery isn't?) and difficult, but he deems it to be successful. It was really difficult because yale's glenn had to be taken down...which in itself would have been a long tedious surgery...I mean it took 9.5 hours to get yale's heart the way it was...and now they were just ripping the thing out. Dr C had the hardest time with the LPAs...as we all know, yale's lpa has been causing some problems...and is stented...well all that came out and it was reconstructed.... the problem is when they started the heart the pressures in his lungs were completely unbalanced..... they managed to get them a little more even....but far from great.... but they had done all they could do surgically.... time will tell if Yale will need a trip to cath lab in order to stent his lpa again.... or if there is a blockage... but we won't know for sure until they try to extubate...
Really this is all details... the point is...the heart is in...and its working better than anybody could have expected.... in fact Dr C told Yale's nurse he never saw a heart jump like that... LOL...Yale's vessels are going to have to get used to the new pressures.... his veins before had like a trickle of blood running through them, and now its like a fire hose... :)
Oh ya..Dr C doesn't know...but he thinks there was damage to one nerve that controls his left vocal cord. He couldn't really see and he repaired where the throught the dmage was....but only time will tell.... he says in a year if Yale's voice is still hoarse...we'll know its damaged... but its something we'll sacrifice for a healthier heart!

So Yale on his 1st day post op had a central line taken out.... the majority of his meds weaned down....and opened his eyes! :) We were told they were going to leave his muscle relaxants for a while because of how long his pump run was and they didn't want him moving all about... but after the late rounds, they wanted to see him start to wake up.... and so far he is totally neurologically appropriate.... he recognized tylers voice as he was walking into the room and moved his head to look at him... he was rubbing his eyes and even went for his tube before he was restrained... YAY

And man is he pink! lol...

I wanted to take the time to ask everyone to please pray for the donor family that they find some sense of peace at this terrible time. Its like I wish they could see the amazing thing they've done....and not just my child...there was a kid getting a kidney transplant at the same time, who's family was there waiting in the waiting room...:) two lives forever changed because that family in its worst time was generous enough to let they're loss not be for nothing. Every year from now on, on December the 10 I will be doing an act of kindness in honor of the donor and their family. There are no words to express what they have done for my family...and my beautiful little boy...

God is great... and he works in miraculous ways..... and don't worry folks... picture will be coming early next week! :)

now lets all celebrate!

tentative donor accepted

Just a quick update...I recieved a call from Dr Dipchand when I just arrived back at the rmh for the night...She has tentatively accepted a donor for yale. we'll know in the next few hours if it is a go. if it is his surgery will be 7 am. if its a go you won't hear back from me for a while....if its not a go, then i'll be back to update...okay?

LOL... again anyone who wants to is more than welcome to come sit with us for his surgery. keep in mind there will be many others happening at the same time, and space is limited... but we will gladly enjoy your company is you come! :)

Yay!

quick update..

to let you know Yale is hanging out in 4D stepdown again....:) no news....nothing to report...I'll come back when there is something to report...:)

F U CCU!

Okay...yale is fine... i mean he's sick and he needs a new heart...but really hes fine... nothing....NOTHING has changed...but apparently some fellows who have no idea the kind of mother I am...and what I've been through, and that I can glance at my child and tell you if he is okay or not....and can touch his fingers and tell you what his blood pressures are and guess his sats to within a degree..... but when it comes to a measly desat into the 50's at 3 in the morning...and I tell you he is fine, wait five minutes and I'll be there.... they take it upon themselves to "rescue" him and take him to the CCU.... now don't get me wrong... I like the CCU...its more freedom and basically the same as stepdown except I'm kicked out from 7-8 and I have to ask to come see him.... no biggy.... but Yale last night did NOT need to go to the CCU... I made it to the hospital as they were rolling him out of his bed spot with two fellows and an RT and race giggling in the background. Yale was sating 76 in the elevator down.... and the two fellows have stone cold faces and are patting my back like I'm upset or something... to tell you the truth I'm more annoyed that I got a phone call at hree in the morning that wasn't about a heart coming.... thats not an easy thing to experience when you hear of a 3 yr old passing and the family donating organs.... LOL

So anyhoo..I come in today and Kristin the NP is like... so we've saved the bedspot...he'd be back upstairs if I had my say...but Tillman says he has to wait until tomorrow.... So.... Yale wanted a change of scenery...and to make my heart skip a beat at 4 in the morning...and now he's pissed he can't sit up and play like he used to because now he has a hood on.... which is actually helping him... his sats are in the 80s when he's asleep... but really.... nothing has changed....

I get it... better safe than sorry... CCU is the place to be if you're have respiratory issues....on top of cardiac ones.... but Yale desats everynight...and I can move his probe and find a place that reads 70...LOL.... but alas...I like my sleep and am not about to stay at his bedside all night to try and convince the fellows that "Look... he's laughing and playing.... he's fine"

So that is my little rant.... I'm annoyed..... but Yale is obviously in good hands...

nuthin new

no news for ya.... Yale's been fighting an uphill battle against his fluid balance and is begining to succumb to it.... he generally runs about 200 positive everyday.... but lately is been getting up to around the 400s and he's almost at his biggest dose of IV lasix..... so now they've bumped up his milirinone to .66 to see if better profusion will help take off some fluid. I swear there needs to be some looking into how his metabolism works because his enox dose is continually running small.... like think two months ago he was on 13mgs... now.... 24.... and still going... I was informed that he is on a "big kids dose" LOL... like a teen's dose... Ya...thats strange.... but... hopefully shortly after the transplant there'll be no need for enox....:) considering is 100 a vial of the stuff... SHEESH!

So... thats the basic news... if you're in yale's fan club group on facebook you'll all be in on the news when he gets a new heart... my goal is to immediately access facebook to send out a notification that his heart is coming and inviting EVERYONE that wants to, to come wait with us... I think the distraction will be needed... :)

So.... ya... if you haven't already...go join his facebook group!

2:00 pm

Just letting everyone know the picc insertion is set for 2 pm.... :) I'll come back after to let you know how it went.

Okay...I'm terrible....here I am the day after updating you all.... truth is it was a long picc insertion....that almost didn't happen because Yale's vessels are so stenoic...the doctor actually used the words "fluke" that it got in.... :) damn Yale and his tiny veins...LOL...

so Yale was sedated with fentanyl... so he didn't notice the multiple pokes or how long he was gone for... but they got in in and he was fine! which is what matters now.... except right now they are culturing everything they can think of because he's spiked a fever... My guess....it'll be urine infection like he had in the CCU that they only treated for 7 days not 10...*shrug* at least thats what I hope it is...:)

so Yale is well...relatively....and his grandma is coming tomorrow for the weekend.... so it should be a great time!
Again....so sorry I was so late updating.... but Yale sailed through the picc insertion.... Thankfully!

Yes...no news is good news...

but...today news is bad news... Yale pulled out his picc line yesterday....GRRRRR!!!!

so he is going tomorrow. He was going thursday for a line exchange...and I didn't even want that to happen...but if it HAD to happen I made clear instructions for Yale to be sedated to some extent. I feel his arrest last time was because of how hard he screams when he is upset and scared...and then having some wire fish around his veins isn't all that great either... so...they agree... they had a time that was schedlued with anestesia open up for tomorrow... and everyone says its a very normal request... some parents just would rather the risk than have their child cry...I personally.,... would rather the risk of my child sedated that have him arrest.... sorry.... but its true...
So I'll be sure to let everyone know how it went tomorrow after we know...I think he'll be first case.... they usually are with sedation so....
until then!
heart hugs!

nothing new

So...Yale is holding steady in 4D stepdown. I arrived this morning to see a woman from the IV team evaluating his picc line...(they broke a lumen last night....I'll get to that) anyhoo...so looking at this thing hanging from Yale's arm is far from painful...not even a nuisance really... and I step around the corner... Yale gets one alook at me.... and gives a big pout. LOL.... I could see him before he saw me and he was totally fine with what she was doing...but as soon as he saw I was there...WOW.... want a little actor he is. About that lumen... Yale's picc is a double lumen...one of those ones you don't see often...as I've been told numerously. Well yesterday as they did a cap change they couldn't get the cap off and so they used the clamps to get it off...in the process cracking the end of the lumen...GRRR... so now we're down to one lumen and one potential infection risk because they can't flush it...the flush just squirts out the side. grrr... Anyhoo.... so needless to say we're guarding the remaining lumen with out lives...no way will I consent for Yale to have that lumen removed and another placed...no way in hell!!!! :)

The other night when Yale was first back on 4d another family got a heart....! It was so surreal to see... I was excited and jealous and scared all at once...and it wasn't even my kid! Now... everyone asks about Yale's heart and when it will come and how long, and how many ahead of him on the list.... it really doesn't work that way.... there is a "list" but for pediatic heart it isn't the same sort of way... I mean if you think of it... if a 15 year old needed a heart, but he was put on the list after Yale....and a heart came but it was from a teenage itself...they wouldn't be able to give it to Yale because it wouldn't fit him... so its all really a guessing game to the families who will get one next!... kind of :) I have to say I had chills knowing that some amazing family had lost a child and were giving the gift of life to this baby and who knows how many other families.... its awe inspiring that it will be the same story that happens for Yale... how quickly everything happened.... even when I heard the whir of the helicopter coming... it definitely gave me goose bumps!!!!

back to normal

So... Yale is going up to 4D tonight. He'll remain in stepdown for as long as he is on milrinone. I can tell he is feeling better because he's giving me the cutest smiles when I'm playing peek a boo with him... and he's enjoying sitting up watching everyone coming and going. He's refusing to eat...which normally would stress me out.... LOL... but I'm just so glad he's back to himself for the time being I could care less. He's recieving is TPN still...and I guess his NG will go back in soon. :)

So amazingly strong that little man of mine. I would have stopped fighting a long time. Its so nice that all the nurses keep stopping by saying how great he's looking...which is true. He was being prepared for ecmo last week and now he's watching elmo and playing with toys. Its going to be cool when its post transplant and he will not only be back to himself, but he'll feel much better... It'll be so surreal... and I'm just that more confident now that he'll recieve a heart in time. I was worried there for a while that he wouldn't make it...that a heart wouldn't come in time...but now I know its just a matter of time... and that I should be thankful for the days we have right now. He's proven to be very fragile, and his health could change in an instant! God has big plans for this little man and I can see that more clearly now than ever!

extubated

So Yale was extubated at 5:30 pm. It went pretty well. Yale has been very agitated with his oral tube.... and kept desating so we were unsure as to whether it would be a successful extubation or not. Like last time, the minute it was out he rolled over and went to sleep. We'll see if he feels that way when he wakes or not. I'm thinking it'll stick.... but won't be surprised to find out he was re-intubated if it happens.... he has a habit....

The collective sigh of relief.

I just got the call from David the IGT Dr... everything went smoothly....YAY...
So the picc is in and it can stay in for as long as they need it too... Thank goodness...now we can stop torturing Yale for blood work and IVs...

Thank you powers that be!....

time stands still today

So... they are going to try to do Yale's picc again today. Dr C came to me today dreading the hard job it would be to convince me to consent to the picc insertion... and all I had to say was...yup, I know. You see, when Yale went through this whole thing...he arrested in the early stages of the insertion, and the picc was abandoned when he went into arrest.
WHY!!??!!?? I bet you are all asking about the picc, and its simple. There was a strong reason for Yale to need the picc in the first place. While waiting for a new heart he'll be getting lots of bloodwork done, as well as be requiring lost of meds himself. Yale (as are most heart babies) is a difficult poke... EXTREMELY difficult is a better term. So to do blood work on Yale once requires usually about five pokes where they dig around and try to get a vein, and often they miss and don't get it at all and we have to try another time. Now think about 5 pokes probably one to two times a week for four weeks then multiply that by the months we could be waiting. It makes more sense for Yale to have the picc...as much as I am freaking out about that idea... I know he needs one and it will be easier on him if they can get one in..... skip now to why today. Yale is doing well. He's ready to come off the ventilator and start eating and getting back to normal baby things. BUT he is protected right now. He has the ventilator andthe central lines and the access to help him quickly if the bradycardia should happen again. They're even going as far as having the big guns loaded and in the syringe pump if he needs that sort of support again. I am hoping that he doesn't and that they can figure out a way to get that stupid picc in and Yale doesn't even notice... that its just a nap for him....
So he's going in between 2 and 2:30 today.... and I will come down here FIRST to let everyone know how it went. I'm terrified that he's not strong enough to fight it again, but confident that his doctor wouldn't risk it, if they didn't think it was neccessary and that he could make it through.
And right now I am leaning more on the letting him go, than the don't even dare side. I think there is a large chance it'll go smoothly now that he has milrinone on board and his electrolytes are leveled. *shrug* but only Yale and time will tell.... so... the resource center is open until 5. I'll come before then to let everyone know how it went... until then...time is standing still with anticipation.

PS! If you aren't already, don't forget to sign up as an organ donor... links are in the top right hand corner!

vivid proof that prayers work!

So.... thank you all for the comforting words and strong prayers. I have to say that I am humbled by the people that really love this little man, and want the best for our family. I came in today to see Yale had slightly improved. He came off of his epi last night without a glitch and the ventilator as been weaned fron 99% to 75% with no desats. YAY... This is a huge improvement from yesterday when Yale would for no reason desat to 45% and just hang around there for a few hours, and that was with all the support he was on. He's now getting an infusion of lasix. All those of you reading that have listened to me rant about Yale's issues with diuretics might laugh.... but he's responding... for today... tomorrow...might be a different story. For some reason Yale really adjusts to lasix and was even showing signs of adjusting to iv lasix before all this happened.... but... for now its working... They're thinking about lifting the muscle relaxants again...but as I and his nurses agree.... there is no reason to do that until we are close to being able to take him off of the ventilator. Yale will just get angry about it (its down orally) and everytime he starts to wake up his blood works goes all wonky and he desats.... so than they re-muscle relax him and up the vent settings and set us back again... :) Oh how I love the joy of annoying fellows thinking they know he'll be okay with waking up on the vent... HELLO... this is the child that goes into the "death scream" when someone walks up to the side of his crib... he's been tortured the entire time we've been here with tests and pokes and scans... he has a huge fear of anyone but me and dad...and he should... its only natural for a 10 month old.... so how would you think he'd react if you woke him up then strap him down because he's scared and trying to move.... ugh... although its nice to see him open his eyes.... its not nice to see how terrified he is when he does.... and I can't pick him up and console him... All I can do is tell him he is safe and nothing is going to happen....Only thing is, I don't think he'll believe me anymore... thats what I told him when I handed him off for his picc.... heck... I don't believe me anymore...

Anyhoo, thankyou to everyone for the positive words and vibes and prayers... Yale felt them immediately as you can see... such an improvement...but such a ways to go too!

And to the Mitchells... thank you for the quick visit and words of encouragement. I can't wait to be on your side on the fence, and to come to Ryley's parties!

terrible things happen in a matter of seconds.

A LOT has happened over the last few days.... and its complicated to get into, and was a terrifying experience so I will most likely forget some of the details, so please bare with me and my rambling explanation. Yale is in the CCU. He is on a venitlator with loads of support medicine. and I don't think he'll be coming off of anything until he gets a new heart...in fact I bet he'll be placed on ecmo at some point... but the doctors assure me that its not in the pages yet, but it could happen. On Monday Yale was fine and we were on 4d. We found out that Yale was going to get a picc line placed in. A picc is sort of like a permanent IV. except it goes all the way up through the arm and to the heart. Through a picc line they can give meds as well as do blood work and it can stay in for as long as they need it to. It was great in theory to stop torturing Yale with his constant need for blood work, and difficulty getting an IV in. I took him down to get his picc, but it didn't go so well... the only way I can describe what happened was that they got the guide wire in, and that irritated his heart and he went into extreme bradycardia (slow heart rate) think 1 beat per minute... so basically an arrest. He had no access so all his lines were thrown in quickly and luckily after three rounds of epi (adrenaline) they got his heart going.
Dr Benson came to tell me that all this happened and that they couldn't get his blood pressure up and that they were basically "sharpening the knives" to put him on ecmo. Luckily, he stablized and is not needing ecmo right now.
His sats are low and his ventilator settings are high. Of course Yale has pulled through worse situations, but he is sicker now, and is definitely getting worn out.
Its really hard to see him swollen on a ventilator and paralyzed on medication. To think that just two days ago we were watching chicken little together and I was rocking him to sleep and now he's so sick.... its really hard to think about, and its really starting to hit me now.

I'm trying to stay positive, but I really thinkwe're in it for the long haul now. this is going to only get worse before it gets better.... as things always do with Yale. I can't wait for the day they tell me they have a heart for him... and the day they say we can go home and Yale no longer suffers from a sick heart and wierd circulation. The day I can leave my child with a baby sitter because I don't need someone who is trained in the signs of heart failure. One day he'll have a whole heart and although we are just trading one set of problems for another... I'm sick and tired of being the mom to a hypoplastic left heart baby.... and I want to be the mother of a transplant baby... and I can't wait for the day that happens...
Also...I got into the Ronald McDonald house today after only 6 days on the list.... at least that worry is over... and I can focus now on supporting Yale through these tough times. I can tell that I am getting weaker through all of this so I can only imagine how hard it is on him. He's the one going through it all...I'm just the watcher. And so now that Yale is in the CCU I'll try and keep the updates daily.... I just hope I can see him open his eyes again and look at me... I'd love for him to be breathing on his own... but I'm starting to lose hope.

listed today

I am so sorry for not getting around to an update sooner. Its been decided to list Yale for a new heart. After presenting Yale on monday at conference, Dr Golding and the Team came to the conslusion that although Yale is stable, it is unclear how long he will stay that way, and that it is in his best interest to list him for a new heart. Now I know there a lot of questions and I have no answers. Especially to those unknown ones... like how long will it take... nobody EVER knows. But they are doing all the tests and Dr D says it is possible Yale may get any blood type heart if he hasn't developed the antibodies yet. I have yet to go through any of the teaching so I don't really know what to expect...the only major question I had was will we go home in the mean time? The answer was a resounding NO. So we are here in the hospital at least three weeks to make sure that Yale is stable on his medications, then if we are allowed to leave it will be unlikely we'd go back to London. The reasoning... they know we could get Yale to Toronto on time if we got a call for a heart at 1 am... but in the middle of rush hours? We're not up to potentially missing an available heart because we can't get Yale here in time. They said its hard enough getting air ambulance for the organ let alone both organ and recipient. So... until I speak with the social worker, I really don't know much. I'm really not leaning in any direction. Yes it would be nice to not have to stay in hospital forever, but because we can't go home to London, it would be easiest on our finances if Yale could stay on 4D... then there is always the RMH and apartments and firends and family....LOL... but... all of these things really depend on the circumstances and can't really be addressed until they need to be. So.... thats the new now...

LOL... as you can tell I've had some time to adjust to the news, and although we hoped and prayed it wouldn't come to this... now that it is I am ready to go forward with whatever we need to do to get Yale his healthy heart and get back to our lives.

still going strong

So not too much has changed since last...but I did get to talk with the doctor briefly last night about the results of the echo. Again... no significant change in funtion. He said although Yale is not "YET" officially going through the transplant work up, it is them who are taking care of his case, and there is going to be some major investigations into why Yale's sats are somewhat low, and yet its not related to his function. He said there are a multitude of possibilities and while they look for them, all the test will be what they use in determining his eligibility for transplant. So while were are here there will be CT scans, numerous echos, x-rays and possibly caths. This morning Dr R has decided to try weaning the milrinone to see if it is in deed necessary... funny how I non-chalantly mention that I think this whole thing is related to the mysterious cough and his not responding to the previous dose of diuretics. She said that certainly sounded reasonable, and so she is going to test my theory, if only to rule it out. I have to admit that the milrinone is working wonders for Yale. They took out his NG tube yesterday just to replace it....but another has yet to be put back in. He's bottling and taking meds like a champ!
Everyone has been trying to be reassuring that they have seen Yale battle back from worse, and it isn't unheard of for babies to grow and get better function. I am not going to hold my breath and I think we will most likely go ahead and list him whether its imperative or not. EFE is definitely playing a role in his funtion, and scar tissue doesn't grow, so Yale's function is unlikely to get better as he grows... even if he is a level 1...its better than not being listed right?

There are lost of familiar faces on the ward, and its great to see so many smiles... And Abby Knight is just the most smiley little girl... she's such a sweetie pie!

Please pray for all the families that have to go through such trying times. Its rough to see soooo many kids with heart problems.. its a wonder more isn't done to really figure out how and why these defects happen... Its a hard life to live... and I want to say thank you to the silent heroes that have been in these halls before us. If it wasn't for one family saying yes to an experimental surgery, Yale would not be with us today....

a little bit of reassurance.

Okay.
We are here in Toronto. Dealing with the funtion team. Right now they are working on figuring out which one of Yale's meds actually work and which ones don't. Apparently its not the way things are done in Toronto that the child is placed on milrinone, while still on old function meds as well as a new oral med. No wonder they felt that Yale was dependant on the milrinone in London. He was on so many other funtion meds that they felt they had pushed his blood pressure as far as it can go. So now that we are in Toronto with a team of doctors that specialize in function, they are going to get things sorted out before they begin the transplant work up. In an almost unrealistic haze I got the look and the words uttered... he may not even need to be listed any time soon. I personally, don't think that is the case, but I am positive they can get him stable enough that he can wait at home. Granted he is on milrinone and that could be why he is sooooo stable... but thats what they're going to figure out right?
I don't know all the details, they are just looking at everything that has happened in the past and Christine his APN for funtion will get back to me later today with a plan of attack... all I know so far is a pic line is going in.... which is good... and we can stop torturing him with iv lines and special pokes and everything...
So its not emergency transplant work up... which I may have kind of hinted to because I was so scared and concerned... but as per usual... the team here in Toronto are so calm in this position...it lends me some strength... I have to admit I was really getting scared there that I may not go home again for months... and that Yale was really more sick that I had any ability to know... but all my worries have been eased....for the time being...
I was just saying to, that its so wierd when you first find out you have a sick kid and he's going to be coming here a lot and people always tell you... well its the best place for him.... well really not only is it the best place for him...its the best place for the parents. I mean I know the doctors and staff in London are great at what they do... but I just don't have the confidence in them, like I do here in Toronto... I know everything is going to be okay... no matter what turn the road takes... These people have kept him alive through worse situations...

Its strange how many people are here from London.... LOL... and little Abby Knight is here dealing with reflux and retching... such a sweetie she is... and as much as I don't want to meet people under these circumstances... its nice as well.... we've been supporting each other since the day they had surgery together, its only fitting we're here together again.

I'll be back tomorrow with some more details... until then...rest easy that Yale is sleeping eatting and even laughing... :)

Deluded???

So I just spoke to Liz today about what is really going on....it seems like everyone else in the PCCU is in a dither and have no idea whats up... So Liz explained that Yale is going to be worked up for transplant and could be listed as soon as the weekend. Apparently we're going to be there for a while...NOT what I expected...Yale seems stable enough to me....but I guess we'll wait and see...I never take what they say here as THE word... Toronto do what they want, and personally I trust them more. So I'm glad the ball is rolling... apparently the cards here in London don't think Yale is even stable enough to come off of the milrinone....even though its half of what it was and he's sating great (low 80's) *shrug* but what do I know right?
Its really scary....and to be totally honest and take off my brave face I am terrified.... the strength I gather is from fighting the worst possible situation...it can always be worse, and for that I am thankful... and who knows... maybe this will go swimmingly.... although I won't hold my breath. I'll post next when we get the word if Yale is eligible for a new heart or not. Please PLEASE pray that he is and we don't even have to hear the words palliate again... I can't wait to come into the hospital and just saunter past paeds cardio and the pccu with my lively pink little baby.... but until then...I am freaking terrified... and don't even want to let myself slip into that place. until I know more....Us.

In the meantime....here is info from sick kids about heart transplants http://www.sickkids.ca/cardiactransplantprogram/section.asp?s=Your+Child+Needs+a+New+Heart&sID=4214

T word

So I got a call this evening while I was at home, that the charge nurse just got off the phone with Sick Kids, and that they will call in the AM if they have a bed for Yale. He's going to Sick Kids... not because he isn't doing well.... he is.... milrinone is down some and Sats are still where they should be, and he's been bottling great. Nope, We're going to Toronto so that Yale can have the whole work up for the transplant team. Fun how I learned about that from a phone call from a nurse.... :) You'd think a doctor might want to mention that to me... but then they might think its no big deal because I don't turn pale every time they mention the word. Nope. although its disappointing that Yale's heart isn't great, and he won't make it to Fontan...or any real amount of time with his own heart... we did know at some point in his life he would require one....and I'm not dumb or naive or in denial. I've known that Yale's heart function is far from adequate....I've had hope that would change, but if it isn't going to, I'm glad the next step is being taken before its too late. Don't get me wrong I am scared...but no more so than I would be for any of Yale's surgeries. I really don't know any more than that though...so after I've had the "talk" and ask my questions and get the details, and we come home (Yale will come home soon) Then I will post what I know....

So No, Yale is not having transplant in like days or anything... this is just to get the ball rolling.. so please don't take it out of context.. Yale is pink and smiling and fine....for now... :) LOL
in the meantime... keep praying...

Doing a bit better.

So Yale's digoxin seems to be taking effect. His sats are up and he can maintain high 70's again... but that could be partially the milrinone as well. there are plans through out the week to wean the milrinone this week and see if he can still maintain satisfactory satuations... If thats the case than it won't be too long until he's home again... if not... then...I don;t know... we'll cross that road if it happens.... (positive outlooks)

So.... until later... thats really all the news there is.... Oh ya... and his lasix and new diuretic are working because he's starting too look like himself again....YAY!

A picture is worth a thousand words!!!

Today I had extensive discussions with Yale's doctors, nurses and cardiologist about WHY oh Why my little man is swollen up like a balloon thats going to float away....OMG

I finally had enough and began to throw a tantrum that NOBODY is listening to me, and I get that Yale's function is a very strong factor in his poor oxygen saturation...but you think the fact that he hasn't peed for DAYS might have a little bit to do with it. Finally the doctor in charge politely took the time to discuss with me...and legitimize my theories, and also explained why they are doing what they are doing. She agreed that my thoughts that lasix immunity could be the case...but then Yale proved that wrong when he had a big pee. They are worried that all the fluid is in his tissue, not his blood and so his blood may in fact be dehydrated, which in turn makes his kidneys think he is dehydrated and so he stops peeing. Which would be ruled out by the big pee you would think? I dunno...I'm just a mom I guess. And then they turned down his milrinone because he was holding higher sats and then he got mad for three hours because he was not having accurate sat monitoring and they kept bugging him while he was sleeping...and they realized that no matter how much oxygen he has on him, it has no effect on his sats. Which I could have told you..because he is swollen to twice his size... HELLO.... so they turned the milrinone back up. its like this never ending circle of chasing symptoms and all I want is a new diuretic to be introduced... which will be done... since I turned on the frustration water works and someone took the time to ask why I was so mad, and then realize that its not an OBSCENE request and can be stopped if it shows beneficial affects. And they want to add another med to help with function called digoxin(sp?) which I am fine with because any help function wise is A O K with me... we want to make this heart last as long as we can.... but really.... can we just get this kid to a negative fluid balance please....I mean he was restricted to a total fluid intake of 800mls...and now he's being pumped with meds and iv fluid as well his normal volume in formula... and he's not peeing... much... hopefully the new diuretic will soon arrive from pharmacy and begin to take effect.

Anyhoo....so now I am home because they had ordered blood work and Xray and a kidney function ultrasound and I just couldn't sit by while Yale screamed through it all... so I am at home waiting for my sister to arrive.... (We're going to go see Lenny Kravitz tomorrow night...a welcomed distraction) I think I've lost all patience with that place...and I don't know why..I normally sit by and let the doctors work there magic...but for some reason I just don't have faith that they're doing the best they can.... and so I've been advocating for someone to help the kiddo pee.... and its be a long hard day.... and its not close to done yet.... anyhoo...so..Like I said the sister is coming to visit...so I might not update as often...so please again...take it that no news is just that...no news... if anything happens that is different that this norm, then I will feel obligated to share it... :)

Please pray for us

quick update.

Just wanted to let everyone know that Yale is doing better.. He's still not "take home" good...but his bloodwork shows that he is doing better... and just when I left to come home tonight...his sats were sitting well in the lower 80's and he was on .25L of O2...which is great! Still not peeing...they've tried IV lasix and he still has tiny wet diapers...not the overloaded huge ones he used to have. I've been venting a lot to people about how I have this theory that his low sats have NOTHING to do with his cardiac function... :) but I am just a mother... and I didn't go to school for 15 years to know what the F is going on with my child... however I came to the conclusion that if Yale's heart is basically in the same state it was in September... yet for some reason he is turning blue, and he needs oxygen... then maybe he has some FLUID retaining inside of him...HELLO.... :) Alas...my measly lifelong knowledge of my child, and many month's learning his ways inside and out, are nullified by my apparent incompetence in the ways of half hearts and bladders... LOL

Okay, you got me, that may not make any sense.... but really...its frustrating that they never EVER just try what the mother thinks first...instead of doing everything else under the sun...just to avoid aknowledging that maybe I know a little bit about my baby and his heart defect, and his new plumbing... and how he breathes and how he pees and poops... you know...cuz I see him 24/7... and stuff...

Sometime I wish I could have Alex...one of the Dr's from Sick Kids just follow me around and tell all the professionals I run into on a daily basis "hey man...listen to this mom...she's not an idiot"... Alex, after all, did shake my hand and tell me "congratulations, you know your kid" when I pressured them to extubate him the LAST time after his last surgery... He felt Yale wasn't ready...and I said...oh ya...he is... LOL..and guess what... he was...

AHA! I've got an idea! I'm going to make this big button to wear that flashes and beeps and says "Listen to Mom, you egotistical idiot"

HAHA... okay enough of a rant.. Yale is doing better {not great} and I am feeling pretty good about that... and I know for a fact HEATHER... you will want one of these buttons right? although I might add to yours... "and there are MANY organs in Asher's body... work together people!"

So enough is enough... oh and If I am wrong... I will post it here... so stay tuned...

Yale is in the ICU

Here in london. I finally listened to my gut and took him to emerge.... funny how one tries to convince themselves that everything is okay and this is "normal" and yadda yadda.... yeah...I was doing that... then just thought...I don't want him flown in a helicopter or worse... so I'm getting this checked out. Good thing I did... His sats were in the mid 60's.... which for a normal person is like death... and for yale is like...okay "why are you not doing so hot?" so they put him on oxygen and did the "work up" blood test, chest x-ray...echo...(not part of a normal work up...but for yale...he's special) they're still waiting to see if there are cultures in his blood or anything else... but his x-ray and echo looked the same as they were before we went to Toronto last... sooo... Why dear little Yale are your sats all crap? this is yet to be determined...

I met another of our new cardiologists Dr Rausch... he's nice...and calm... which I was as well...(wierd thing in an peads emergency room) but this is normal for me... and I was cracking jokes.. that he wasn't getting...but the nurses were... LOL. Anyhoo... so the phone calls were made to Sick Kids where they said...there is no reason that he can't be stablized in London...there is nothing more that could be done for him in toronto because it doesn't require any sort of surgical intervention. So... Yale was sent to the picu. well first we sat in emerge for 5 hours... which in perspective is a short period of time to get an icu bed... (how sad is that thought?) When we arrived he had the vip suite... big room in the corner... albiet the "loud" room in the corner...so Yale is desperate for sleep and then lost his IV...so they gave him one in his jugular...ya...it was as gross as it sounds...not an actual line in his jugular...just a periferal line there(vein tha runs parallell)... they're going to start him on some support meds... read: Milrinone, or dibutamine or both. Really...we have no idea why Yale is so unstable...SURPRISE.. so they don't want to do any major tweaking and throw off what is stable.... they think with just a bit of tweaking with the meds he's on and some rest and support he should be able to come home...but i'm not going to hold my breathe.... cuz that could kill me.

Funny that while Yale is laying over a nurses lap and a doctor is stabbing a needle into his jugular do i finally here the T word... Transplant. Its about time someone just cut to the shit already... like I was going to throw a tantrum and freak out because they think my child will need a new heart...I had pretty much expected it when he has NEVER had even semi good function... I'm not an idiot here people.... it was almost a relief that someone got honest and said exactly what I was thinking... how sick does this kid have to get before someone thinks..maybe this isn't working for him... Don't get me wrong... I don't want Yale to need a transplant...I want him to keep his own heart as long as he can... but I also don't want it to wait so long that he dies waiting for a heart because his just can't work hard or long enough.... So they finally got an Iv into his neck... (at least they didn't shave his head) and he was moved into a room with doors...so he can sleep...and he was given some chloral so he can sleep...and I can feel okay leaving... Not that anyone feels okay leaving a child in the ICU... but I don't want to sleep in a chair.... and Yale has a nurse by his side... he's finally getting some care...and so I am looking forward to this sleep... Some might think this sleep would be interrupted with stress and worry...but really... all my sleeps are interrupted by stress and worry... but tonight it won't be interrupted by screaming baby too.... (sorry...other heart mom's know that sometimes you have to laugh so you don't cry)

Anyhoo.... thats about the gist.... when I know more news...I'll let you all know... And sorry for those family members who may learn from an email before I make a call... I was busy in the icu today...and now I just want to eat something and go to bed...

Please pray for us....

confusing symptoms and rambling thoughts/worries

So.... Today has been somewhat confusing with Yale for me. I'm getting more and more confused with him lately... he's blue. which is never a good sign....but I can't tell if he is "more" blue, or if I'm just worrying. *sigh* Then he was weighted today and he is gaining about an ounce a day... which is concerning...but is it because I've given in to fortifying his formula and he isn't wasting energy bottling so much....now I don't pressure him to bottle... if he doesn't want to drink...I put it in his tube. The most concerning thing that happened was that as he was drinking his last bottle...I picked him up and he was sweaty....but he just woke up and he had a polar fleece blanket on him...and the heat is on... GRR....
So really there are no answers and I just wish Liz was around so that I could just have her evaluate him and tell me one way or the other. I mean... I know he's not doing the greatest...heart-wise... so what signs should I really pay attention to? He was blue when they discharged him from Sick Kids... he wasn't eating the best when they discharged him...their concerns we whether he was gaining or not...
All I want to know is what are his sats? his breathing is still anywhere from 29-50 given his activity level...or if he is asleep.... his mood is better than it was yesterday...but he's not like he was when I was home... Man I just wish I could get a break from the constant worry....I wish my mind could be put at ease.... and I guess the answer is easy...take him into emerge... but I really don't want to sit there for hours if he is just fine... I want the quick and easy sat probe and quick listen I could get at peads cardio... uh...why oh why did Dr Buffo not sign for me to get a home O2 monitor? Then I'd have my answer right there... Huh... I think I am going to call tomorrow to Sick Kids and see about getting one :)
LOL...

A letter I wrote to a friend who has a "heart baby" who said I could vent...

Hey.... all my appointments have been anything but cardio....but still all that stressed me out is cardio involved. Yale's feeding issues stem from his decreased function. While we were in hospital he had a hard time meeting TFI requirements. although they never kept him at a level of fortification for more that 12 hours. So I fought the NG tube while there because I know he can take in enough fluid at regular strength. however after being home, although he was taking in enough, he wasn't gaining...not losing either...but not gaining enough. So we concentrated half way up to 22... and well he wasn't making his fluid requirments and I started to get worried and stressed because I felt like all day long, all I was doing was offering him a bottle and tracking everything he took in. I made the decision to place his NG tube. and felt guilty about it because he was MAD at me... wow. and I was guilty and stupidly felt like it was a step backwards and that I somehow had failed him. I mean it was only in July when he was still NG fed...I don't know how I got so used to living without it. Anyhoo... so now its in, and I'll be topping up his feeds and he can have a stronger fortification. I resigned to the fact that if god forbid this new med doesn't help and his funtion doesn't get better and we have to go to transplant, I want him chubby. he is just skin and bones right now and barely gaining a thing...his growth curve hit a bump. So now I am now trying to be pro active... instead of reactive. On the good side of things he has stopped protesting tummytime.... he shows interest in getting stronger and I can tell he wants to move,,.. but can't. So the extra calories can help to facilitate that. Enough of my being selfish and wanting him to work so hard so that he seems that much more "normal". I think the part that is bothering me the most is that his two friends that are2 and 3 weeks younger... are already standing and scooting around furniture. I mean I "Know" that he is a heart kiddo and that mean nothing is going to come easy for him. but i kind of feel like i could have done more, or is there something I did?.... terrible how its all just hitting me now. i think i was deluding myself into thinking that post glenn he'd be more normal and stronger and healthier... and that he'd be all normalness until it was time for the fontan.... Wow am I ever clueless... and its hitting me smack dab in the face that he will NEVER be normal, and he will never be heart healthy, and I think now I am really mourning that healthy baby I never go to have. I just wish, just once it could be a little easier... and then i think that I am super selfish because there are loads of kids out there that are having a harder time than us... at least we're home, and relatively stable. I think in this lull of semi stability I lost my coping mechanism, and now i'm really seeing it... and feeling it.... and dealing with it. *shrug*is this all normal to go through? and why am I looking to anyone else to show me what normal is? Anyhoo.... thats what I am dealing with lately...and it sucks.Hugs to you! Tanna...
So thats what I've been dealing with lately. Yale has his Ng tube again...and how wierd is it that I'm upset because now I have to take it out if I want to get "nice" holiday pictures of him... I just wish I knew when I'd become okay with all of this.... how come I never got a choice. and why is seeming so much more difficult now than it was back then?

Huh??

What the? Wow am I ever bad at keeping up to date on this blog...Sheesh... We'll we came home Tuesday Night from sick kids. I have never felt more evicted than I did this time. It was like... rounds, shower, you have to leave we need the room...LOL... seriously... thats what it felt like. We were kicked out!


Anyhoo. Yale came home because there is nothing they can do for him at Sick Kids about his heart funtion. They found no anatomical reason for his decrease in function so they started him on Carvetilol. Carvetilol will take a long time to show any improvement if any, and so there was no reason to keep us in hospital. The only reason we were there so long was because Yale's feeding had definitely decreased... So while in hospital they uped his lasix to three times a day instead of one. As some may know...when the heart isn't working so well, its hard to get rid of fluid... thats why we don't like Mr. Yale to be puffy or have crackly sounds in his lungs (which he had) so now that he is all dried out like a potato chip, his breathing isn't as laboured and he is feeding relatively well. They've set a slightly lower TFI (total fluid intake) for him so that we won't have to monitor his as closely... just if I see signs of dehydration to lay off the lasix.


So now our only problems are dealing with firm stools. (a side effect of load of lasix and increased calorie intake)Yale has been infamous at having a hard time "going". tonight was the worst I think I've ever seen and even saw traces of blood in his stool...(so off to the paediatrician) Yale is on a couple of blood thinners so, as blood in stool after that sort or straining isn't to terrible, it can post quite a problem for this little man. So I'll be paying a close eye and waiting until Tuesday (thanksgiving holiday). Hopefully there isn't much more, or we'll be making a trip to emerge.... So much for those "side effects" of carvedilol. One being loose stools, we had hoped that would even things out...but not so true.


I've also taken it upon myself to go get some flax seed oil to add to Yale's bottles to help keep his stools softer. Yale has been standing still on his growth curve and at sometimes losing weight. That is why we're currently uping his caloric intake (fortifying his formula) and it cause his stools to become even more firm. So flax seed oil....and flax meal to mix into his solids. Yale isn't big on the fruits and veggies but is all about his cereals...so hopefully I can slip some more fibre into his intake... Poor little guy.. I didn't even feel this sorry for him after his surgeries.... he at least had pain medications then.... :(


Anyhoo... if any of you have any more tips for making his bowel movements easier PLEASE offer them.... poor little man... makes me wish I kept pumping breast milk for this long.... No one (especially Yale) should have to go through that.
So on a side note....here are some pics to show the dude! :)


Yale trying on his halloween costume.

Yale showing his two bottom teeth coming in

Yale with his fave... Nurse Natalie

Yale doing tricks... anything to get out of eating!

Still at Sick Kids

Hello everyone....Yale's Grandma here. Tanna and Yale are still at Sick Kids eventho the doctors didn't find anything in the tests they did on Yale. So they are changing his meds. However Yale has decided not to eat. Tanna thinks his teeth are the problem but they must stay till he increased his feeding more. They don't want him to get gehydrated and get more sick so there they stay till Yale decides he wants to go home. Tanna thinks that may be next weekend.
Please keep your prayers and good vibes coming that they get home soon.

Yale's Grandma

Sick Kids tomorrow

So we're going tomorrow to Sick Kids. Yale is going to be admitted onto the ward. Dr Golding called me this morning and expalined all the tests they want to do. Well the ones that are already scheduled. He says its more than likely that more will be needed to cover all the bases. As of right now Yale is shceduled to have a sedated echo and CT scan. Dr Golding isn't sure but has a hunch there may be an intervetion required that will mean a cath. He basically explained all the sames things that Liz did yesterday. Here's hoping this is fixable... and dare I say it,.. rather quickly.... although not too quickly as the jack hammers are finally working at the last side of my building repairing the balconies. YAY... so even though this trip is unexpected and unwelcome... as least we can be out of all the racket for a while and if I'm lucky they;ll be done by the time we come home :) Sweet! LOL... always a silver lining to every dark cloud, you just have to look for it. So I'll hopefully post while in the hospital, but it might be intermittant seeing as I'll be on the ward, and its kinda like jail there :) but trust me...when I know something you all will know something!
lets keep praying and sending the most positive vibes out everywhere :)

So we're heading to Sick Kids this week

So I got the call from Liz today after she spoke with Sick Kids. The team there agrees that Yale's function has decreased again, and so they want us to come this week (I'll be getting a call tomorrow with the specifics). Liz says they plan to do an MRI to see if there are any obstructions or causes for the decreased function that they can intervene. If that is not the case than there will be a med change. Hopefully the med change will help because if it doesn't, it looks like we will be heading towards a transplant.
Please everyone we need the prayers again.
Oh and to update on little Abby Knight, the baby I asked for prayers for, she is doing great. She's had a Gtube placed and is expected to go home sometime this week.... YAY! I am so happy for her. Her parents and family are ecstatic! Even though she will soon be back for her next surgery, they are glad she made it through this rough road! Sick Kids do it again!!!

So the freedom is gone :(

So cardiology visit today didn't go so well :( I'd go into all the details and whatnot, but really.... I don't feel like it. The gist of the problem is Yale's leaky valve. Its worse and his right ventricle has enlarged some more. So Yale is being presented on Monday when Dr Golding will be back at Sick Kids. Then we'll know if we have to go for a visit. (most likely) Liz says its most likely they will make a medicine change that can be started here in London. Only we'll have to make weekly visit until it is at a theraputic level...which Liz said could take quite a few weeks. There are other things that could be done.... but we don't want to think about surgery or cath lab or anything...
I just hope this is the course that everyone agrees on and it gets Yale's heart stronger. My biggest fear is it not getting better and them no going through with the Fontan. Luckily the fontan is quite a ways off, but still... Immediately when I got the news I went straight into the what ifs. I didn't ask anything yet because I just don't want to know the worst case scenerio...(but of course I know). Once again I have to put faith in the doctors..they know what they are doing... Its just so disheartening. He seems to be doing so well. I knew right away today looking at his xray that his heart was enlarged. and if I can tell...thats a bad thing :(

On the other hand I am very glad we got our visit home in there while we did. Yale had a great time and we had lots of visits...and lots of normalcy...which is far and few between.




Here are a few pictures of our visit :)
Yale having tea with his Great Aunts Nancy and Louise

A four generations picture!!

Hanging with Great Grandma Hartzke

Relaxing outside on the patio...enjoying the fresh air:)

We lost a friend

I got the message today and am very saddened by the news that we lost the fight for another heart child. Yale's last surgery was scheduled the same day as little Meghan's TOF surgery was. Her's was posponed for an emergency surgery to take her place. I got the sad news that Meghan didn't make it...... here is the message.

Hello Everyone,My name is Jenn and I am one of Lynn's good friends. Lynn asked me to write to you all on her behalf. It is with deep sadness and sorrow we let you all know our beautiful baby Meghan went to be with Jesus early this morning - August 23 2008. Meghan had a wonderful last day and evening before becoming suddenly ill early this morning. Once at the Children's hospital her condition deteriorated quickly and soon after, she passed away. Of course the family is absolutely devastated and in shock however, they are surrounded and supported by family members and close friends. I did talk to Lynn again to tonight and she did want you all to know, they did get to spend some time with Meghan and know she is now at peace and is with God.At present time funeral details are pending however, I will update this site as soon as I hear from Lynn or Ian.Please continue to prayer for the family as they struggle to come to terms with devastating loss.With much grief...Jenn

Meghan was a darling for the day I met her at pre-op. She brought light into her parents lives, and a smile to my face. I know her parents are greatful for the time they had with her, but this sort of loss is devastating for anyone involved. Please help me pray that her family finds some sort of peace and strength to make it through these days.

Heart hugs to all those babies out there fighting the good fight. It makes us hug our children a little tighter to know that a loss can be so sudden.

Here is a link to her facebook group http://www.new.facebook.com/group.php?gid=21033355667

Rockin' in the post glenn world!

Okay...so lets talk about my day today. Today Yale was supposed to have bloodwork done to test his Enox levels... well this afternoon while sitting with Yale at the bus stop I lean in and ask..."Yale, did mommy give you your needle today?".... LOL.... so ya, my days have been running into the next and I forgot to give Yale is enox this morning... kind of a bummer because his levels need to be taken right in the middle of a dose... 4 hours after I gave it.... so...Yale didn't get his blood taken today...LOL...which is fine because the bus was late so we wouldn't have made it on time anyway.... the bus was so late in fact I decided to walk to the hospital (a 35 minute walk) so that I won't be late for Yale's cardiology appointment...which was conveniently scheduled for after his bloodwork.... So I swear barely five minute after I decide to walk, my bus flies by... OMG... this to me is a bad BAD omen for Yale's appointment... not to mention my bike being stolen, and the pounding headache from the monster sized woodpecker banging on our building (balcony repairs with a jackhammer)...anyhoo I finally get to cardiology and Liz greets me with a "there you are, wow is it hot out?" and I say "not too bad" although I obviously looked like I just ran a marathon...thats what happens when you walk outside at noon on a seriously hot day...

Anyhoo...onto the appointment. After our last appointment I was totally expecting to have the full work up on Yale once again...because well thats just the history...Yale give the drs concerns... they give multiple echos then they find something bad... Last time they couldn't see his LPA...you know the stented one...Anyhoo... Liz exclaims, "So I talked to Dr Golding and he explained that they've never seen his LPA"...never ever, and the only reason they know he has one is because of his CT scan and the fact they can see it during caths...oh and Dr Caldarone never mentioned a none existent LPA during surgery... LMAO... So all that was done was Yales Sats and his weight (sats were great last week and weight was down) this weeks his sats were fine (not great but fine) and he gained! WOOHOO! Then we got to meet our new Cardiologist Dr Welisch.... It was just a quick greeting so that she could see Yale and meet me... then Liz explained that in around 6 weeks Yale will have a lung perfusion test. This is where they put dye into his system then watch how the blood flows into the lungs... A great thing I think! Anyhoo...then Liz says so when did you want to go home and I say next Friday...for two weeks and hold my breath and she says "Okay thats fine" and I'm shocked cuz last time she gave me a dirty look and told me to wait for her answer at our next visit.... anyhoo... I was/am elated. I get to take my baby home to meet family and I get to spend two weeks that is the serenity of the house I grew up in, in a small town, on a lake...with Yale and NO FREAKING dr appointments.. OH YEAH... and you want to know the best part? Yale's next appointment is scheduled for a MONTH away... a freaking month.... Man I love post glenn life... :)

Oh yeah and please keep praying for baby Abby.... its working... still no results from the MRI as it was delayed a few times, but her Mom says they are weaning her vent settings...and she is tolerating it.... lets really show this family...and anyone that doubts us, what we can really do for her!

Prayers for our little friend

Okay everyone, remember when I was talking about the sick little babies that we were sharing a room with? well there is still one sweet little girl there and she needs our prayers. Her name is Abby Knight and she has been proving herself to be a fighter. I can't recall how many times her parents have been told "she may not make it" or "its up to Abby now". Any parent knows how hard it would be to just have to wait, and this family has been waiting for a good long time. Abby Has fought her way to a more stable situation. She's finally had her chest closed, and she is proving to battle all the infections (and fungus) that have rittled her tiny body. She is barely three months old and has been through more that anyone should ever have to face. Now they are worried she may be facing brain damage due to her lack of oxygen during the many times her saturations plummeted and were impossible to regain. She is scheduled for an MRI in the near future.
I'm asking for us to pray for strength for her family. I don't know how many times I told her that the power of positive thinking works, but even I would be faultered by disbelief after all they have gone through. They really need us at this time, so lets put all our effort into showing them the power of prayer and positive thinking. We know without at doubt that the love we all have for Yale helped him, now lets show this family and sweet little Abby that we are here with them and fighting for them!
thankyou!

I'm terrible

So okay... I know I promised pictures...I'm so terrible... I'll see what I uploaded...I have some good ones....but can't put them up yet, because they are going to be gifts....

Yes, we're going home! Finally.... turns out I haven't been back home since I was pregnant with Yale. thanks giving I think....its almost been a year...and a long year it has been.

So those of you back home... we're coming home.. Just a note though that Yale isn't going to be on display. He still (and will always be) a little fragile, and so passing him around from person to person is the quickest way to get him sick... and that can be a REALLY bad thing. I think that is the main concern everyone has with us going home. I even got the "I don't want to say you can't go, so we'll talk about it again at his next appt." Ya... so... basically is going to be a one on one thing.... and there will be a whole lot a hand washing...and please...if you are or have been around anyone sick... DO NOT COME NEAR US! thanks! And if you think I've turned into the germ nazi....just go back and look at pictures of Yale in the hospital.... we don't want to go through that again any time soon...

Anyhoo.... here are some pictures...

HAHAH...okay so thats the only picture thats been uploaded to my computer since we've been discharged... I swear I'll get around to it someday... but look....he's home...and he's pink! :)

Maybe Grandma has so pictures she wants to add, seeing as I stole her camera and took a bunch of pics with it.... ???

We're home!

So we did it! We made it home...finally! Yale really meant it when he thought....enough is enough I want to go home!
My mom came down for the weekend and was so lucky to be there to witness our discharge and is here with us for our first night at home alone. YAY!!!
I'll post some updated pictures and maybe some details tomorrow...but I thought everyone should know that we made it! Stage 2 is behind us and we have some time now before we have to think about surgery again....phew!

(pardon my french)

We're in 4D BITCHES!
LOL...I've been wanting to shout that out all day.... we made it! We're in step down, and we made it! All Yale's lines are out...all he has are pacing wires in his chest, and an IV in his foot... If this computer had a webcam you'd see video of me doing the happy dance.
So Yale is still on his oxygen, but after speaking to his PT she thinks that he has very low amounts of secretions in his lungs, and he should be succssefully weened from his O2 shortly. Heck he threw a fit today and only desated to 65%... The alarms were going off and I of course was expecting to see a 30 or 40% up there....but nope...it was a 65% Thats amazing for someone who couldn't breathe on his own less then 4 days ago! Seriously...I feel elated...its the only way to explain it. I think back to how I felt July 22nd hearing that Yale went into cardiac arrest in the cath lab, and now we're in 4D and Yale is starting to return to his old self. Its hard not to cry when you really think of where we could be had things not gone as well as they had. He's still very angry, and untrustworthy of anyone that comes to his bedside.... but he's starting to play again, and I think he knows he's really doing better... he must feel amazing really!
I got the pleasant surprise of having lunch with HeatherPeters , Asher Blithe and Bram. Oh and Heather's mom and Aunt Jen.... :) My what a breath of fresh air they all are. Asher is looking good....he has his occasional blips, but he seems well. (feel free to check out his blog...the link is on the left-->)He had a quick visit with Yale before they kicked him out. Kids under 12 aren't allowed to visit in step down...of course both Heather and I know this...but it didn't stop us! LOL play stupid... I think Yale was shocked to see Asher though... he got all big eye'd, then gave Asher a dirty look when he started to play with his toys... LOL..
So Yale was still on milrinone when they brought him upstairs, but it was shut off today.. if he manages his blood pressures fine, then we should be moved to our own room as soon as one opens up! And you know what our own room means right??? There is no where else to go but home! yes I said it, and I'll say it again.... we will be coming home soon! I haven't been this happy probably since Dr Caldarone told us that Yale made it though surgery!!! He really is a big big BIG fighter.... the strongest little man I've ever known... and such a blessing!

the turn around

HEy folks! So... I just want to catch you all up on what happened over the weekend and monday. Yale was again extubated yesterday around 1:30 I didn't want to say anything because I was starting to think I was jinxing the whole thing...so only Tyler knew. I knew immediately that it was going to work.... Yale sats jumped to the high 70's his resp rate slowed to a clam pace and he fell off to sleep. Its kind of funny, because when I think back to his last extubation, and Tyler will confirm this, I just got into this grumpy mood. I was expecting all day that they'd put CPAP on him.... but it ended in an early morning reintubation.... GRRR... this time I was silently optimistic and was vigilint by his bedside that nobody mention 4D or say anything that would jinx it. Alex his fellow even began to refer to it as "the plans for his future care" LOL. He gave me a big hand shake this morning and agreed I really knew my son! At least someone noticed!

So we were moved from our room of sick babies as "we don't meet the criteria" for this room. Which sounds mean, but when you know what the criteria are, you are glad to hear it. Shortly after Yale was taken out from under his box and put on nasal prongs, the crew from 4D came waltzing in. They checked out Yale's history and looked him over and said they'd try to get us up there today or tomorrow. Thats when the charge nurse came and told us we were moving to room 94. They have bed and staff issues upstairs in 4D today and so they brought a 4d nurse down to the ccu to look after us. so basically its like we're in 4d only without the travel time to get there..LOL
Yale is doing great!!! Like I said he's on nasal prongs with about a litre of air going...they'd ween him off it, but they don't have low flow devices in the CCU. ;) His chest tubes finally came out. Its about time as they almost ran dry... he still has his pacing wires, but they will probably come out in the next few hours as well. Today we also got to have a cuddle in a rocking chair while I fed him... Its soooo amazing to finally see the light! We're going to get to go home soon! One day me and my baby will be home with no more surgeries for at least 2 years! WOW! Its so comforting to know that... We did it! Thanks to all of you! Really, if anyone ever thinks or says that prayers and positive thoughts don't work... look at my son....He is here today because so many people care about him! I am a very VERY proud mommy!

not so successful

So we got a phone call last night at 3:30 am that Yale had to be reintubated. BOOOO :(
I was disappointed to say the least, but having a very sick little baby in our room on ecmo really puts things in perspective. It could always be worse, and the doctors "almost" always know best.
The story I got when I arrived in the morning is that Yale really worked himself into a frenzy, and his secretions from his lungs really started to build up. (think angry dog frothy at the mouth) Only the froth is in yale's upper airway and it hurts an awful lot to cough and get them out. Anyhoo... so they tried to give him cpap to avoid reintubating, however...as we know from previous experience. The cpap mask really REALLY makes Yale mad....so it just made things worse. Needless to say he easily took to the ventilator again. He isn't being restrained, and isn't trying to get at the tube. So as his doctor said this morning, it was just a little blip in Yale's recovery. We were just too zealous at getting him off the vent when he still had quite substantial secretions. He's resting and still working to get them up and out, and cooperating with his physio to help get his lungs ready. They are aggressively weening him from the vent and plan to extubate again in a few days. hopefully the 3rd time is the charm and that will be it! I certainly think they have found the answer too as keeping him on codeine has really helped to curb his temper.
So some would expect me to be more upset than I am, but really, my expectations are really just that, expectations, and only Yale knows what he is ready for. I personally think that the others in the room really put things on perspective. One baby has had surgery then cath lab and then her last surgery was taken down and revised....and is struggling with pneumonia, another arrested three times in one day, but is now on his road to recovery, and the saddest is a tiny newborn, stable on ecmo, but with a severe brain bleed... I think in the grand scheme of things, we are pretty fortunate, and I would like you all to send out positive vibes and prayers and anything else you can think of, not only for Yale, but for all the other families, going through more trying times than we. These babies need all the help they can get!

Successful Extubation?

I think we might have done it! Yale was extubated today at 10:30 am and was still at holding on at 10:00 pm this evening when we left. He's crying and showing his temper, but just has a little meow for a cry because of how sore his vocal cords are from being intubated so long. No worries, he'll be shattering crystal again soon...

I'm just itching to go to sleep and wake up tomorrow so I can hold my sweetie. 24 hours under his humidity hood and he should be ready for nasal prongs....

So here are the most recent pictures.... He's really starting to look like himself today!

And the award goes to.....

Yale Seaton for "Most improved in 24 hours"..

This was the joke this afternoon during rounds. Yale is doing so well, I just KNOW that it is all the prayers and help of God and all the positivness coming his/our way.

Yale's sats have continued to pick up through out the day. he began at 38% when I walked in to 68% when I left this afternoon. Now, those really aren't great sats you might think, but considering that his bloodwork has been regularly showing that his actual O2 saturation is 10-15 points higher, this is super duper man! LOL

Its a whole new feeling to be there now, no knots in my stomach, no pondering glances from the fellow, no scary stat calls from overhead.... its just great all around. Today Yale got a great bath. I got to perform most of it, but allowed his nurse to do the tricky stuff around pacing wires and what not. I even got a semi cuddle as I was the one to life him while they changed his bedding. They stoped most of his meds with the exception of his morphine, heparin and milrinone. so really. he's doing this all on his own. They stopped paralyzing him and stopped all muscle relaxants so that he could have a neurological assessment. The results were good. As always there is the chance of something showing itself down the road, but for now, he's not. He's coughing great and physio is doing wonders at getting the gunk out of his lungs. I think the plan over night will to slowly ween the vent and hopefully if all goes well tomorrow they will prepare to extubate. I'm no getting myself psyched up about that, but am very glad that its even in he hind thoughts of the doctors. If you just scroll down and read the post previous, you really can see why Yale is clearly in the lead for most improved in 24 hours!!!!

Keep on praying...

just a question..

Anyone ever had their heart drop in the throws of a medical emergency, but be totally out of the loop, and know that something REALLY bad is happening.... then you realize, wait a minute, that is my son in there... the emergency is invloving him? Then have to wait 20 minutes before anyone will even acknowledge you full on panic attack. People are running around, and won't make eye contact, and you know from you personal knowledge that this is really really bad?

Ya that just happened to me.

Now, I don't want to scare the bejeezes out of anyone. Yale is fine right now, safe and sound in the doctors hands. I do have faith in everything they do.... but let me just tell you what just happened. Yale is in a very fragile state. Like I said, its tricky business stenting parts of a heart that have been so freshly operated on. He's had issues maintaining O2 sats, and really has just been a pain. So here I am, sitting in the waiting room of the beautiful new cath lab they have here. Then it happens, that big bong. I hear this bong all the time here in Sick Kids. its means everyone stop and listen. Then I hear, "cardiac perfusionist, stat call to the cardiac cath lab" now, for those of you that don't know, a cardiac perfusionist is the person that runs the heart and lung machine. This is the machine that they put you on during open heart surgery so that you won't die. Now, Yale is the only person in the cath lab, last case a squeeze in case. So me putting two and two together FREAK THE HELL OUT!. Then to add fuel to my fire, I see every single cardiologist and fellow and anestesiologist RUN into the cath lab. Now I'm really REALLY freaking out! still no one thinks to say hey, the mom is right here balling, lets let her know whats going on. I call Tyler who is at work and very calmly trying to hide my own panic say. "stop working, get to your car and come here now. I'm not sure what is going on, but its not good" Needless to day this sent Tyler into a tailspin. Yale is supposed to be recovering, he knew we were in the cath lab, but we've been here 4 times before. Never with incident. So imagine thise feeling for a full 23 minutes. Then God felt like I needed a break and he sent Dr van Arsdell out to see me. He has a smile but is still avoiding eye contact. He then asks me how I'm doing and I say obviously, not very well. He starts to explain that they have one stent in place, and are going to put another. I say "so he's okay? I know what a cardiac perfusionist is..." and he say yeah. we had a minute there where he needed chest compressions, but we didn't need to intervene more than that, he doesn't need the additional support of the Ecmo, but everyone is there just in case.

So I have already begun to protect myself with my sense of humor and positive thinking. I think when things have settle and I have a real minute to think of this again I may just ball my eyes out. for now, I am strong. I have to be for Yale. and getting upset won't help me or him any.

Dr Van Arsdell just came to say that they have stented both PAs and his coronaries look good and his sats have already begun to rise. He has concern that there is a gradient in his aorta, they measure it anywhere from 7-20. He says right at this moment it isn't anything they want to go in and correct. It could be put off until his next surgery, or it could be addressed some time next week. But for now, he is heading in the right direction.

SO PLEASE PLEASE PLEASE...pump up the prayers and good vibes... we really really need them today!

Finally some answers

Hiya everyone.. I am so sorry for losing my touch with this blog. Its been a stressful few days, and really with no news. Yale over the weekend was progressively declining with no answers in sight. Many people that have been to the ccu in Sick Kids may have noticed that the place sort of shuts down on the weekend. The goal was just to keep him as stable as we could. He often would desat into the 30s and scare the crap out of everyone around. He's proving to be his sensitive self and needs the loving touch of his RT ever hour or so to keep his sats higher.

Yesterday they sent him for a CT to see if there was anything they were missing and to see things they couldn't see through echo. They knew that something just wasn't right, and well... today I was glad to finally get some answers. From the CT they noticed that Yale's LPA was very stenoic right where it branches.(artery that leads to the lung) Normally this would be upsetting to hear as soon as you walk into his room first thing in the morning, but a collective sigh of relief was heard from me, as well as his nurse, when Dr Van Arsdell said he finally had some answers. Yale is headed to the cath lab today. Scheduled for noon, but heard from the anestetist(sp?) that that is quite an ambitions time, as there is still a case before his. HEck... I was just glad to hear that there is a reason for Yale's struggles, and that something can be done... Its not so mysterious like his failure in May. So prayers are requested. There is definitely higher risk stenting something so fresh...

Just a side note... yesterday I was hit smack dab in the middle of my face with a lady bug... I have always been told that lady bugs are lucky, and now I really do believe this. The sweet bug fell to the inside of my sunglasses and at first I was startled and was going to flick her away...then thought better and carried her to safety in a flower bed here at Sick Kids. I've got some good pictures of this lady of luck, and will post them as soon as I can load them to the computer....She sure has brought us some good luck so far! Also... we're nearing the longest that Yale and I have been apart. I can only stroke his head, and sometimes don't as it bothers him and he desats. You never really realize the love you get from your children, until its taken from you. I'm starting to get desperate and its only a matter of time before I start asking random women if I can hold their baby...LOL... I miss his cuddles, and can't wait until he is breathing on his own again...

...

Not even an hour after my last post, Yale was re-intubated. The theory is that if they make it easier for him to breathe, the more energy can go into healing his heart and increasing his function. He immediately looked better nad is comfortably resting. I was upset at first about this major step backwards, but am glad to not seem him struggle so much!
Keep on praying for him... we need all the help we can get..
Its quite upsetting as mother to have all these expectations, and then to have such a setback, even though I know its for the best and his doctors are amazing... I was still quite stressed out.
I'm taking the advice from his nurse that while he rests, I should as well. I'm no doing anyone any good by pouring out such negative energy, that is all based on my own expectations. So for now I will stop posting... at least until monday. take reassurance that no news is good news, and if there are any major events, I will of course let you all know!

Two steps forward....

One step back. It appears I was over zealous in my excitment for Yale's recovery. Any mother of a critically ill child knows that the battle of recovery is often described as a 2 steps forward, one step back process. Yale has proven this to be true...once again. He has a history of setbacks with his stroke, and poor function, and CHF and this is no exception. Tyler and I arrived today right smack in the middle of rounds this morning, and at that moment Yale was having an episode. He, all thoughout his recovery, will get upset, desat to the 30-40s then recover on his own, however, conveniently timed this morning he desated to the 20's and took well over 15 minutes to mildly recover. The issue for me with this is that during rounds, because of confidentiality, parents are not allowed in the room while rounds are being discussed about the other patients. So perfectly timed we are stuck out in the hallway while doctors are running around trying to help Yale recover from his desat and get him settled. I can hear him screaming, and they are rushing in with an echo machine to make sure there isn't any physical problem with all the attachments of his new anatomy. And there I was stuck out in the hallway.

Needless to say, Yale is now on cpap. You may remember this from when he was in heart failure in May. Well he required some assitance breathing and this is the best they could do without re-intubating him. All of the heart function medication he was on following surgery was weened overnight, and now he is back on them all including a few more. After reviewing his echo, everything is good, except his funtion...something that has been an uphill battle for Yale for sometime. So they are just working on getting it back up and giving him some rest. He will remain on Cpap for the next few days, it proved to help him when he was in failure, and they believe it will now.

Yale's history of keeping his nurses on their toes proves to be true. And my belief that he truely does like it down in the CCU does too. It was merely moments after his doctors mentioned his moving to 4D this morning that he had the episode.... LOL so now once he is more stable and they start to think about sending him upstairs, the code word will be "shopping" LOL...

So just a little update of the stress Yale is creating today. He still looks well, this is just a step backward that the team is on top of. So all of you out there sending prayers and positive thoughts... keep them coming... they are definitely needed today!

TA DA!

Extubated and breathing on his own.... WOW it was so good to hear his voice again. Yale was extubated at 3:30 this afternoon... Still a slight chance he may need to be re-intubated, but for now he is doing great under the humidity hood!!! This as we all know, is a huge step forward... his blood gases are all coming back normal, and really its a matter of getting his O2 sats up, then we're really on our way home... (not to mention I should be able to hold my little man again soon...for the first time since I handed him over for surgery.)
Auntie Erica will be coming this weekend so I'll likely only make few updates...if any...after tomorrow, until monday as the resource center is closed here on weekends. :)
Thanks to all who have been praying for little Megan. Her surgery has been postponed at the last minute (she was all washed and in her gown ready to go) Her family is back in London and awaiting news of her reschedule, and at that time I hope you'll all join me in sending her and her family all our best!
Yale is proving to be the fighter we all know he is... its so nice to be on this side of surgery now. I keep getting hit with little blast of reality that we've actually made it this far. And its all in thanks to the wonderful team here at sick kids.
We still have a long way to go, and problems can pop up at any corner, but wow... I am just in aww at this strong little man... He's so brave and strong... he truely is my hero!

A quiet night

So, last night Yale had a pretty quiet night. they kept him pretty well sedated to allow him to rest. This morning we came in to a pretty agitated little boy. They are thinking he is suffering pretty badly from a "glenn headache". The plan was to ween him from the oxygen and extubate him, but he is so agitated, they've decided to put that off until later today if not tonight. They again upped his morphine to give him some rest and are working on getting some of the fluid off before they go ahead with extubation. From what I gather from rounds, he is doing quite well. Dr Calderone snuck up on us this morning ad said he is happy with his progress thus far. His real issue that they want to get under control is to get his saturation levels back up. A variety of things will be done in order to do this...but Ipersonally from being Yale's mum, and seeing him before with low saturations know exactly that it is the fluid he is retaining. Heck he was on lasix (a diuretic) three times a day back home. and he's only had one dose since surgery...HELLO... but alas I am only a mother and not a doctor...I can say all I want, but they don't listen... I'll be sure to say loudly "I TOLD YOU SO!!!" when they do finally figure out that i'm not a complete idiot...LOL... Anyhoo... I do have total trust in his nurses...its those darned fellows... assuming I'm a hysterical mother....
Anyhoo... thats all for now... I'll be sure to update when more happens.... keep the positive thoughts coming!