Wednesday, July 30, 2008

(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 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!

Tuesday, July 29, 2008

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 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!

Saturday, July 26, 2008

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, we know from previous experience. The cpap mask really REALLY makes Yale 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!

Friday, July 25, 2008

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!

Wednesday, July 23, 2008

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...

Tuesday, July 22, 2008

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...

Friday, July 18, 2008


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!

Thursday, July 17, 2008


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!

Wednesday, July 16, 2008

9.5 hours of surgery later....

Well... as we all knew Yale is a very strong surviver! Today was long to say the least, but in the end, we've got good news...
After speaking with Dr C Calderone, Yale's surgeon, he was hoping once again to tell us that everything went smoothly, however there were a few bumps along the way. All of these "bumps" are normal and can arrise in any surgery, but this is the gist of his summary of the surgery.
-Yale had some bleeding issues during his surgery, and required quite a few transfusions. Again, not unexpected, but not great.
-He noticed that the coronaries (the veins the supply blood to the heart muscle) where they are supplied from the aorta were small. He said it was good that he had is surgery when he did as it was just a disaster waiting to happen. He said that this, in connection with his restriced PDA ,were probably the cause for his poor funtion and failure when He was flown to Sick Kids
-Yale was on bypass for about 5 hours. His heart has been slow to recoup, and he will likely be needing some assistance with medication to get it up to snuff. He did however notice that all his numbers were steadily getting better over the 5 hours he was off of bypass and therefore thought it was safe to go ahead and close his chest.
-We won't know until Yale is well on the road to recovery whether there was any more neurological damage. the risk is great considering his past...but only time will tell.
Basically, other than what to expect over the nex few days-weeks, thats about it. Now its just the wait. the next 48 hours will prove if there will be any more major setbacks. So keep you're prayers and positive thoughts coming.

Also please please please Pray for little Megan Tremblay. She was supposed to have her surgery today but it was postponed until tomorrow. We spent pre-op chit chatting with them, and as this will be Megan's first surgery, (and a big one at that) they will need lots of prayers. We all know they work!
So in the meantime we only spent a few minutes with Yale once he was in the CICU. We're exhausted, and know full well we can trust the nurses and we'll be taking advantage and geting some much needed rest (the last few days have been pretty sleepless to say the least) Anyhoo... I snapped some pictures of Yale this morning while waiting to be taken down for surgery and him in recovery. (I think it was pretty fitting that the room we were assigned before surgery was number 7....lucky?)I was expecting much worse when we finally got to see him, but was pleasantly surprised to see the full amount of swelling and bruising has yet to set in! Thank you everyone!

Yale's Grandma

Hello Everyone,

Well its been a very long day for all of Yale's fans and family. I just got off the telephone with Tanna. Yale's surgery started at 10:15 am and finished at 7:30 pm. Yale is in recovery and doing as well as can be expected. The next 48 hours will be critical. There were a few issues but Tanna will fill everyone in as soon as she can get to a computer to update the blog. Bottom line is that my grandson is a strong little man and made it through surgery ok. Please keep your prayers coming for his full recovery.

Yale's Grandma

Sunday, July 13, 2008

Last Post Until....

Okay everyone... I just wanted to say a whole hearted thankyou to all the well wishes, they are greatly need and well appreciated...

This will be the last post I make until I let you all know how surgery went!!! Wow... am i ever going through every emotion there is...

Anyhoo just wanted to leave you with this!