Our Lil' Hero: Home and Back again!

Thursday, February 10, 2011

Home and Back again!

Quick update:
Mason got to go home on Sunday... YAY!!! But he just got admitted again last night (Wednesday). We took him to the pediatricians office on Wednesday because he was really fussy and had a temp of 102. There was no obvious reason for it so they drew his blood and his white count had gone from 8,00 to 20,000 and his CRP was really high (they didn't tell me the value) So we came as a direct admit to PCMC. This morning his CRP had doubled from yesterday and he has been on antibiotics since 10:30 last night. All the viral tests have come back negative and he had a echo and his heart looks great! So now it is just trying to figure out what is causing all of this. If it's something minor we could hopefully go home as early as sunday but we also have the potential of being here for at least a month. We are hoping for the Sunday date! :) Zac has to leave so I will try to get an update in tomorrow when Mason is sleeping in the Parent Resource Center. Thanks for all the thoughts and prayers! And HAPPY CONGENITAL HEART DEFECT WEEK!!! :)

2 comments:

brenda said...: I hope Sunday too. I will keep checking up on you but please let me know if you need anything, I could come down and just keep you company or take Ryder if needed!; February 10, 2011 at 8:25 PM
Heather K. said...: I'm so sorry that you're having to be back in the hospital with Mason. I hope it is sooner than later for all of your sake. Being in the hospital so long can take a toll on your sanity. Please keep us updated with how he's doing. I hope his #'s are on the decent now that he has had antibiotics for 24 hours now.; February 11, 2011 at 8:07 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.