Our Lil' Hero: Today

Wednesday, February 2, 2011

Today

Sorry I didn't update yesterday. Mason got taken off the ventilator late Monday night and has done great without it. They still have him pretty sedated so all he does is sleep. He hasn't woke up yet, he opened his eyes once for a few seconds is all but his vitals are good and they figured out his meds. They decided he has a really hard time coming off of the anesthetic from surgery because he did a similar thing as when he was out of his heart cath in the picu. He screams and screams but isn't awake and nothing calms him down so his blood pressure shoots through the roof and his oxygen levels do just the opposite. They maxed him out on off the pain meds and sedation meds that they could and he was STILL screaming so the attending suggested maybe trying ativan and totally helped him out so much! They told us he would probably go to the floor today but his blood pressure is higher than they want it again and his lungs are full of fluid so they are keeping him in the PICU and we will see what happens tomorrow. They increased his Lasix and added another diarrhetic to see if that will help with the water retention that his making him so swollen and also help with the wet lungs. He still has all his chest tubes and we still haven't held him yet but we sing to him and hold his hand. We seriously love all of the employees in the PICU they are so amazing and so good to Mason and us. So he is still doing good just still on the recovery road. So we are really excited for tonight though at the Ronald McDonald house they have a bulletin board of events and what not and there is a flyer saying somebody donated tickets to one of the suites at Energy Solutions for the Jazz game tonight so we are going to the Jazz game in a suit! We are so EXCITED! Zac has never been to one so what better way to go to your first Jazz game than in a suite! People are so generous and it seriously makes you want to help out also. Someday I am hoping we will be able to give back to these places that have helped our family out so much! I wont update again tonight but Ill try really hard to update again tomorrow.

7 comments:

Unknown said...: you guys are in our prayers. have fun at the jazz game:) u guys deserve it.; February 2, 2011 at 9:43 AM
Katy said...: I'm glad that Mason is doing okay. It's crazy to think of all he's been through. I hope that his recovery continues to go well. How fun you get to go to a Jazz game! You guys deserve a fun night out!! Too bad I'm not there to lend you my jewelry;); February 2, 2011 at 9:45 AM
Trevor and Dayna said...: Im so glad the surgery went well. I have been thinking and praying for u guys so much lately. I loved the pics sari got of u guys. Very cute boys. Good luck and know I am thinking about u. Lots of love, dayna; February 2, 2011 at 11:18 AM
Peyton said...: Don't think we are stalkers - but this is Travis and Tracy - parents to Peyton. We talked in the waiting area while our kids were both in surgery Monday. We also have a blog (www.peytonsparents.blogspot.com)and I noticed you had one as well. We don't know you personally but we both commented to each other that you guys are doing a great job in such a difficult situation. Best wishes to your family and espescially little Mason.; February 2, 2011 at 3:05 PM
Jolene said...: Thanks for the update. Glad things are going well. It was fun having your Mom and Ryder here. Have fun at the game!!; February 2, 2011 at 3:40 PM
Heather K. said...: How fun for the Jazz game! Glad to see that Mason is doing so well and almost to the floor! Exciting! Is he on a feeding tube right now or did they get him back on oral feeds since he was eating pre-Glenn?; February 3, 2011 at 8:35 AM
Lisa Marie Trent said...: Mollie- thank you for finding my blog. Reading about Mason brings back SO many memories.. But we were lucky (is that even the right word?) maybe fortunate, to learn of Jack's condition before he was born. Mason looks like a REALLY strong kid and I bet he'll do great through these surgeries. I'm actually headed to Primarys in the next day or so for a lasix refill- maybe if you are on the floor we can meet. I'm glad you found comfort in the heart family community, if you need anything or have any questions, don't hesitate.
Lisa; February 3, 2011 at 9:58 AM

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A little about Mason

This is a journey through Hypoplasic Left Heart Syndrome (HLHS). Mason was born on October 1, 2010 as what we thought was a healthy normal baby boy. At 3 weeks old we found out when he was life flighted to Primary Children's Medical Center that he was born with an Unbalanced AV Canal Defect that caused him to have Hypoplastic Left Heart Syndrome. He also was diagnosed with 2 Large ASD's a VSD, a CoArch of the Aorta, and a small leaky Mitral Valve. He had his first open heart surgery, the Norwood, in the end of October 2010. After surgery his chest was left open and they surgically closed it a few days later after the swelling went down. He had his second open heart surgery, the Glenn, in January 2011. He did great with recovery and got discharged 1 week later. We had him home for 1 day then he was rushed back to the hospital where they found he had a sternal infection and had to open him back up and wash out all the infection and he had a picc line placed for 6 weeks for antibiotics. He had a couple of heart caths during that time, and echo every 3-6 months, and eye surgery.
In February 2013 we sent his records to Boston to explore different surgical options for him. We found out he was a candidate for a surgery called the Staged Left Ventricle Recruitment to the BiVent. With this surgery it would grow his left ventricle to normal size and then give him normal circulation to hopefully avoid him having to have a heart transplant. (if we didn't go this route we have been told with his anatomy he would need a transplant in his teens). With the help of friends, family, and strangers we went to Boston where he had the first of hopefully only 2 surgeries. He had his 3rd open heart surgery in June and right now his heart is growing and conditioning to be able to handle the load of the work that a normal heart does. He is due to have his 4th open heart surgery in the first of 2014.