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