Our Lil' Hero: Movin' on Up!

Sunday, November 7, 2010

Movin' on Up!

We are officially out of the CICU/PICU!! The past two days have been big but good days! So I'll start with Saturday, Saturday they took out his pacer wires, art lines, AV lines, and the last chest tube so WE GOT TO FINALLY HOLD HIM!!! Such a great feeling to finally hold my sweet little baby again! That afternoon the Nurse Practitioner came in his room and said guys we have a problem so we were like oh crap what, and he said "I don't think we can find a reason to keep him down here anymore!" Problem for them because they fell in love with little M but good for us because that means he is doing great and is one step closer to going home! So he is still doing great but in the night he started having withdrawals from all the narcotics he has been on so they had to start him on methadone to help him get over them. Today around 11:30 they moved him to the Children's Surgical Unit. He is awake most the time and just is content as can be. When we got up here they taught us both how to give meds through his feeding tube just in case he has to go home with it. Tomorrow he has to do a swallow study to make sure he can protect his airway when swallowing and if he can then we can start giving him a bottle. It looks like we will be home sooner than anyone ever thought we would be, he has really exceeded everyones expectations down here. We are so proud of him and are so privileged to be his parents! We wouldn't have made it this far with out going insane if it wasn't for everyones support and prayers! I probably won't have a computer again until Wednesday so take it that no news is good news until then!

7 comments:

thecannon5 said...: YAY, I am sooo excited to hear that. I hope he comes home before Thanksgiving for you guys. I know that you are all being watched over and little M is being blessed. Our thoughts and prayers continue to be with you. We love and miss you!; November 7, 2010 at 7:06 PM
Anonymous said...: Wow!! I am so impressed with your little man!!! My friend is an RN that works in the surgical unit there- Melanie Rose- and she is awesome!! I hope everything continues to get better and better!

-Lara; November 7, 2010 at 7:16 PM
triplej said...: That makes me happy!!; November 7, 2010 at 10:00 PM
Kas said...: I just found your blog and read up on little M and am so happy for you and him! I hope he continues to progress and a steady rate and that you get to bring him home sooner than later! Babies are tough and it sounds like your little guy is a fighter! You guys have been in our thoughts and prayers! love, Kassandra; November 8, 2010 at 1:27 AM
Heather K. said...: YAY!!! Holy cow he moved up to that floor fast! I am beyond thrilled for you guys!!! :) Good luck with the swallow study. I'm sure he'll do great!

BTW - hopefully M is off methadone before he goes home. That stuff is a pain to measure out because the dosage is SOO small! :); November 8, 2010 at 8:04 AM
Gourley said...: We're so excited for you guys and little M!! We so glad to get to be friends up here. Hope all keeps going so perfect for you guys!!!; November 10, 2010 at 11:02 AM
Manny and Tylin said...: My mom told me what happened, and I'm so grateful little M is doing well. It sounds like you have truly been blessed! Hope all continues to go well! Our prayers are with you!; November 10, 2010 at 6:05 PM

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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.