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.
21 comments:
Tanna, Yale, Tyler
To the three of you my heart and thoughts go. Do try and stay positive no matter how hard it gets.
Kelly
Tanna:
My heart sank reading your words. We'll be at Sick Kids tomorrow and I will try to track you down. I pray that you become a "transplant mom" very soon!
Joanna
Praying for you and your little fighter to get through this tough time. I pray Yale gets a new heart very soon and all goes well...
Thoughts and prayers
Cindy
hugs, hugs and more hugs. I was shocked to read your update and I will pray for Yale to get a heart very soon. You must be so tired and overwhelmed but as you always have try to remain positive. If there is anything you need, please just ask.
A London mom sending lots of prayers for Yale. I hope that you have your "transplant baby" in your arms soon. Sending you strength.
Tanna, I pray that Yale gets his new heart soon. I am thinking of you always. Stay strong Tanna.
Tanya
All the LM's are praying and pulling for Yale and yourself.
Stay Strong Yale!!
I pray a heart becomes available in a few short days. It is possible. My nephew was only on the list for 4or 5 days before his heart became available.
Yale, you are a fighter! Stay strong little one! We all want to see your beautiful eyes and smile again.
I am so sad that you had to go through all that and that Yale had to go through it. I will be praying continuously for Yale, he is one strong boy he will pull through. I will pray for a healthy new heart soon!
Jenaia
Tanna, our thoughts and hopes are with you and Yale.
Wow, I'm so sorry to hear all that has transpired. I'll be praying for you guys. You are right, you are just the "watcher", but what you are watching is the most precious thing in your life, so you have every right to be emotionally and phically exhausted. I always thought just sitting in the hospital was the most exhausting thing. All you do is sit there, but it seems like you've been running all day, it's so tiring watching and waiting, looking at numbers and praying for the best. Sorry I made this a book. :)
God bless,
Millie and Colin-HLHS
We're all thinking of you Tanna! I hope Yale gets the new heart soon.
Tanna you are a strong mom and inspire me to be a strong mom too. Were praying so hard to Yale and you that God give you guys strength and a heart come to Yale very soon. Our hearts are with you!
Sherri, Matt and Tessa
Tanna,
I don't even know how to begin..
I keep thinking about how when we were pregnant you were this force of positivity, you were such an inspiration, and I was truly in awe of how you could maintain that force, you know? I firmly believe that You and Yale were meant to be, I don't think there is another mom that could be any stronger than you have been and your positivity can only help Yale now the same way it helped him before. That said it is ok to lose sight of it sometimes too, your surrounded by support for those moments too.
I know there is nothing I can say or do to help--nothing will besides taking him home, but know that my every prayer and hope is directed at that day happening very very soon.
Take care and big hugs
Carol from london moms
I am praying for strength for you as you watch Yale going through this new ordeal and for a new heart to be found for him soon. I'm also praying for wisdom for the doctors and other staff as they deal with Yale and his complexities. God bless you all.
Gayle Heywood (Heather's Mom and Asher's Nana)
Tanna,
Our family wishes you and Yale all of our strongest prayers and best hopes.
Jane (LM)
Holding you all in prayer. This is heartbreaking to see Yale going through all this.
How fast things can change.... I'm keeping you in my thoughts.
Steve
42, Tricuspid Atresia
Glenn Shunt 2/67
Blalock-Taussig Shunt 3/77
Fontan (Abandoned during procedure) 5/88
I am thinking of you and Praying, wearing my lucky ring too...It will never come off again
I know this is tough...I also know that it will all be over soon, and Yale will have his heart.
Stay positive.
Sending love, strength and hugs
Praying that Yale gets a new heart. I know how hard this is
Tranplant Mom
Tanna
My name is Jennifer Heywood I am a cousin of Heathers I read about Yale on her blog, and my hear goes out to you. I wish there was something more I can do for you but alas the only thing I can do is pray and pray I will and hard. I hope they are able to get him a new heart soon. As a mother myself I cant imagine what you are going through. Keep strong.
My thoughts and prayers are with you and your family...
Keri
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