delayed updates

I am soooooo bad for them... LOL

Just wanted to update on Yale's biopsy and svc stenting. all went well.... they decided against Yale's stenting since (in the words of DR Cheterveti [sp?]) "there was more risk in stenting than just leaving it. We could push lots of dye through so its nice and open. minor narrowing on the heart side but the svc is fine."

So ya... that meant... you guessed it... we got to go home... no overnight stay! YIPPIE DO DAH!

LOL

and halloween came and passed... what do you think Yale was?

SVC stenting

Hello fellow bloggers! Just wanted to come here and do an update....since its been FOREVER since I have. Yale is doing well... we have some uneplained vomiting but since I've limited the fluid volumes at a time its definitely decreased to once a day.... Yale has an appointment in the cath lab for this upcoming Wednesday Oct 21. He's having a biopsy as well as an SVC stenting... generally a pretty straight forward procedure as long as Yale cooperates... hopefully the most difficult part is getting IV access.... as usual. I'll quickly explain SVC stenting for those who are not cardiologist, cardiac nurses, and heart moms... :) The Superior Vena Cava (SVC) is the major route of blood return from the upper body and head to the heart. When Yale had his Glenn procedure they moved this vein from draining into the right side of the heart to drain directly into his pulomonary veins.... thus bypassing the need for two ventricles...(since he only had one!) Anyhoo, then when it came time to put a new healthy heart into his chest they had to bring it back to drain into the right side of his heart (which then pumps it to the lungs) and as well all know about scar tissue it rarely if ever grows.... so where his SVC was connected to his heart is still quite narrow... So they are going to go in and put a little piece of metal mesh tubing into that area and baloon it out so it holds the opening larger. The metal will be there for the rest of his time with this heart... ;) so no more MRI's... So there you go... a minor cardiac lesson for you all...

Anyhoo Yale is doing great otherwise.... we had a visit for two weeks at Grandma's house in New Liskeard.... although we didn't get as much visiting in as I had hoped (I'm lazy and quite the shy person) we did get to see both sides of the family :) Yale perfected his walking while up north with quite a few bumps and bruises....but has it down pat now! His talking is still merely jargon so we have an apointment with TykeTalk booked for this november (3 yr anniversary of the loss of the twins to be exact) and hopefully they'll give me some more ideas on how to get more words out of the guy.... and yesterday I gave him his very first haircut..(technically not his first since he has had a few shaves for scalp IVs..) I did it myself and think it was a success...and now he REALLY looks like dad... if it was possible to do anymore than normal..

Anyhoo I'll attach a couple pics so you can see him growing :)

With Grandma and Grandpa Seaton

New hair cut

With Uncle Jeff's giant pumpkin at Aunt Erica's house!

pneumonia

Okay I thought I would update now that all is said and done. We had our first hospital admission since yale's heart transplant. I brought Yale into emerge on wednesday because I could definitely tell that he was working much harder to breathe, as well as bouts of lethargy. I could feel his little belly heaving when I would have him in the carrier. So as you could guess I was quite nervous when they brought the echo machine to check him out. Luckily it was not his heart and I was reassured his heart is working well. So with that fear aside I was ready to face whatever it was. to put it in the words of the resident his chest xray looked "junky" so they decided to admit him for pnumonia. Yale's sats were in the high 70's when admitted, and after some long screaming and choking during his xray he seemed to clear some of the gunk out because he could maintain higher sats for 15 minutes here and 20 minutes there.
After a talk with sick kids it was determined that Yale was to have a round of antibiotics IV for at least 3 and then oral. Well Yale didn't agree with that in having 11 pokes to try and get an IV he ended up with a line in his scalp, which he proceeded to pull out the next day. then another 7 pokes to try and get another line the doctors decided because they cannot get access on him, that he would have IM antibiotics... (in the muscle) as well as oral to cover the bases they would have had he been able to get them via IV. Yale slowly progressed to get higher O2 saturations thanks to loads of chest physio from me. I wanted him OUT of that hospital so during the day I did physio every few hours...
Finally we were allowed to come home on day 4 of his stay after much discussion with the team. Yale continued to have dips into the mid 80's and they didn't want to let him go. Luckily after calling sick kids Dr D said to let us go. Phew. So now we're at home...still doing chest physio until his work of breathing is much lower.... he still gets a few coughs out now and then...but we are all much happier to be home now.

Wow... I'm terrible....

at keeping up to date on this blog...SORRY!!!!

So a quick update with Yale. We had clinic on Thursday the 23rd and biopsy on Friday. Yale did well at clinic ad we don't have to go back for two months. He has a sore in his mouth that appears to be healing, but will for sure take some time. So we'll be keeping an eye on that. Yale did well in his biopsy. We've learned that he still has zero rejection even after almost three weeks off of one of his antirejection meds. After some discussion his team had decided to drop that med all together! something quite unheard of... but very exciting! Yale will have his next biopsy in three months (a little sooner than usual becuase of the dropped meds) and at that time he will have his SVC stented.

So here is a few pictures to show you how littleman is growing up! He's able to take about three steps on his own now. Although he gets mad when we make him do it. LOL a week or two ago we took Yale to storybook gardens for the first time here in London. this will definitely be a place warranting a seasonal pass for Yale in the next few years. I used to dream about places like this to play at when I was growing up! and for $30 for the season, who would pass that up?

Picture post

So my sister Erica was here this past weekend. She was inspired by a little guy by the name of cameron sky villa... the toddler artist. His paintings sell for upwards of $500 dollars. Well, Erica is the resident artist in our family... well the next generation I guess, and she wanted to inspire Yale, one of the future artists...


















The finished piece.


Here is one of the many videos of Cameron on youtube! Be sure to inspire your children's creativity... its an awesome experience!

wait for it....

There it is... that nice calm exhale... *phew*

We are living in the exhale. The calm sweet easy part of life. I spend my days doing nothing really, just watching Yale grow up. How great is that? I know not many of us will admit it, or really talk about it, but it has to be said. Heart moms are constantly worried that their babies will die. Its really a hard concept to grasp, but its quite true. When you think about worry in the normal sense, like you are worrying about paying bills, or what to eat for supper, those worries aren't 24/7. You can get distracted from bills... Heart moms worry their babies are going to die. 24/7. It never stops. When I think back to what it was like with Yale from his birth to the day he got his heart transplant, I probably let go of that worry for a total of two weeks... the two weeks after his glenn before the function problems came around. It was tiring, and burdensome and really a horrible way to live.
Today I played with Yale and I put him down for his nap SURE he will be there when I go to get him when he wakes up. No longer do I worry he may never wake up from this nap.
I was visiting Jen and Gabe in the PCCU.... laughing with her about how wierd it is to not know how many diapers Yale makes on a daily basis. I used to be obsessed with pee. Is yale peeing? how much is he peeing? It was the number one sign I watched for to be sure of his health. Everytime he was flown to sick kids or admitted to sick kids or LHSC, it all began with less pee. Today, I have no freaking idea how much the kid pees... Thats right... i've stopped being the hyper vigilant heart mom.
I hate to say these things out loud, worried about jinxing them.... but right now.. I have to say, I'm fairly confident Yale will be around for a while. Its true. I know they warn us that this is just switching one set of health issues for another, but man oh MAN.... am I ever happy with this set of worries... I sleep at night. Yale might cough through the night.... and I just listen. I don't get up and go into his room and turn on the light to watch his color.... thats over now.

Yale has taken to babbling and using his hands to make big animated gestures when hes talking about something exciting to him.... My kid is growing up. I'm sure every mom will agree with me, pretty much when you learn you are with child, you dream and imagine the whole length of a life with a new child. watching them do everything you did again for the first time. When I got Yale's heart diagnosis, I stopped. They wanted me to kill my baby, or he would be lucky to live to be one year old. I've started dreaming again.... about Yale's first day of school, and sporting events, and teasing him when his voice cracks during puberty... we have our lives back.

I really hate that we cannot have contact with the donor families. I mean we are welcomed to write correspondence back and forth. but its through trillium, and we cannot use names or have any means of getting into contact with one another. I really REALLY wish Yale's donor family could watch this blog. see what they have done for complete strangers. WOW... what a blessing and gift that family is! I plan to keep this blog going as long as blogger is going... and i'm actually contemplating putting each year of posts into books for Yale... the book of Yale... as told from mom... Wow... I'm sorry and I know this post is really rambly and confusing... but really... I just had a lot of feelings I had to get out and share.... and maybe seeing this one person will decide to be a donor. Look at how much can happen... and I know for a FACT Yale's life wasn't the only life that was saved that day!