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!