Our Lil' Hero: Long Day of Appointments!

Thursday, March 24, 2011

Long Day of Appointments!

First I would like to thank EVERYONE that came to the race on Saturday! There was an AMAZING turn out. I feel so grateful for all of our family, friends, ward members, and strangers that came and supported our little guy! I haven't gotten the official number of people who participated but when I know I will for sure post it!

Today we had a long day of appointments at Primary's. Almost 2 weeks ago Mason had a basic hearing test and didn't pass so we started out our day at 9am in Audiology. They did the ABR, a more advanced hearing test. The instructions they gave me was he needed to be sleep deprived so they told me to put him to bed 3 hours late wake him up 3 hours early don't let him eat until we get there and don't let him sleep on the way down.......... I was thinking in my head, YEAH RIGHT! How am I going to keep my 5 month old awake from 4am to 9 during a 2 hour drive?! Needless to say I put him to bed at around 1030,(3 hours late) woke up at 6(1 hour early) and I tried to be very very intertaining on the way down but yep he fell asleep by the time we got to Brigham City! He only slept 30 mins but I was a little nervous they wouldn't be so happy with me! When we got there he was wide eyed but he was such a good little boy and when I fed him he fell asleep in my arms and they were able to do the test and he PASSED with flying colors! We got done with that at 10:30. His Cardiology appointment wasn't until 1:00 so we had to kill time, luckly/not luckly our good friends are admitted and we hadn't seen them since November so it was SO nice to see them, especailly because the mom really helped me out and kept me strong during the Noorwood, she is such an example to me so I loved seeing her again, and of course cute little Carter! Then also my other good friend had appointments at the U so I was able to see her and her cute belly before she has such a precious baby on Tuesday! (I'm sure you are all interested in the play by play of our day, sorry for that! haha) By the time we were done with all of our visiting it was time for Mason's appointment. He gets a chest x-ray every time so that is where they send us first so by the time we see the Doc he can look at it. First in the room they did his oxygen trial to see if he could come off of his oxygen, he failed so he is still on oxygen. After that the doctor came in and the first thing he told us in his x-ray his lungs were kinda wet and his liver looked enlarged. So he felt his liver and it is enlarged....... He also has been sweating a whole ton. Well those symtoms could be sign of heart failure. But they are hopeful that it is more because his lungs are a little wet. So they upped his Lasix to try to really dry him out and our next appointment they we do a sedated echo to look at the heart and see how it is functioning. (His echo after the Glenn showed decreased function) They are hoping upping his Lasix will be the easy quick fix and that is what we are hoping for also! So we will be watching him closely for more signs or if the sweating doesn't get better! The good news of the day is after all of that the PICC line got taken out! YAY!! The first thing I did when we got home is gave him a bath! It has been 2 months since he has had a real bath so I was pretty excited for it and he seemed to like it also!

His Chest Xray from the front

From the side

I took these in radiology of their computer after they took the picture before they put them in the computer and it is hard to see the wetness in these ones but when the doc pulled them up in the room it looked more wet.

5 comments:

Cindy said...: Hope the Lasix works. I'll be sure to keep Mason in my prayers.

Cindy (IHH); March 24, 2011 at 10:21 PM
THE JOHNSONS said...: They said they are concerned but not to worried yet.; March 24, 2011 at 10:22 PM
brenda said...: Well at least the picc line is gone :)! Hopefully the med works like it should!; March 24, 2011 at 10:47 PM
Heather K. said...: Oh dear...I'm sorry! At least 2 positives of the day was the PICC line removal and he passed his hearing test! :) We'll be praying that the extra lasix will help the extra fluid come off and that will help his heart function. When are they going to check again? I don't remember if I read that or not...do you go back in a month to see how its working?; March 25, 2011 at 9:23 AM
thecannon5 said...: Seriously Mollie, You are the STRONGEST Woman I know. I admire and look up too you. You are such an amazing mother and person. I pray all goes well with Mason. Lots of love and prayers your way!; March 25, 2011 at 11:17 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.