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.