Mason had a medication adjustment and echocardiogram today.
First decent appointment following an echo that we've had!
Masons heart hasn't changed much since we got home in October which is somewhat a good thing, it hasn't gotten worse! Actually there are some slight improvements. His right side did show improvement basically to where it should be pumping. His left side hasn't shown but MAYBE tiny improvement, if that. The valve leak looked moderate still. But it's not so much the echos as it is how Mason is doing physically. Mason weighed 12.2lbs and was 25 3/4in long. His weight is not ideal but we knew that months ago. He's on his own curve which is good. They'd like him to get acclimated to his medication at the highest doses until we try to start playing catchup. Of course he's way below the percentage line but he decided he makes his own charts.

We met with Speech therapy and occupational/physical therapy today. As far as his "speech" he doesn't seem too far behind. He isn't ready for foods yet. But would like us to get as many different textures teething toys and maybe try some teething biscuits (not wafers). As for his motor skills, he should be sitting up somewhat. Which he doesn't do at all. So we will be working on this mainly.
I tried to get the okay to give back the feeding pump, but we still aren't out of the woods there. Fear is that patients with issues like Mason can quickly take a turn back and then NEED the "tube of doom". So they want us to have it readily available. He still has at least 2 more medication increases before we are at the peak allowed. This will be adjusted over the course of the next month. From there we will hopefully have a better idea of what course of action we will be on; switch or transplant. #masonstrong #chdaware #heartwarrior #ltga #transpositionofthegreatarteries #transpositionofthegreatarteriesltype #chdwarrior #chdsucks #chd

The last 24 hours have been miserable. This little guy has refused to eat, has been throwing up every day the last 3 days, sweaty, fussy, irritable, not sleeping. It's been horrific! And of course through this difficult time and non stop crying we end up with a roommate (but they have been GREAT and I could not ask for better people to room share with)! Today we had to put the NG tube back in and had to have a rescue dose of methadone. We are hoping this either helps or will lead us to the path of seeing if there's more going on that we don't know. So once again we prolonged our stay. I just can't wait until we get over this huge hurdle we've hit 😞 #masonstrong #chdlife #heartsurgery #ltga #fbmasonstrong2017 #transpositionofthegreatarteriesltype #masonmyhero #openheartsurgery #ohs #heartwarrior #chdsucks

This is THE MOMENT I've longed for since surgery day. The moment of watching Mason become Mason again. The moment that I knew he no longer hurt. The moment I knew all is okay. The moment all felt right in this journey. The moment his heart was doing what it should.
Today was spent working on feeds/nursing and just getting some normalcy back. We weaned the methadone a bit more, so he's been more awake and active.
Tomorrow we have to have a sedated echocardiogram and a wire study for his SVT. It should be pain free and give us an idea of how severe this SVT is. It will hopefully determine what medicine to put him on or how soon we should try ablation.
#masonmyhero #heartwarrior #chdawareness #openheartsurgery #chd #zipperclub #masonwilliam #fbmasonstrong2017 #transpositionofthegreatarteriesltype #tga #heartsurgery #chdlife

Today was not a fun appointment. Mason's had troubles with weight gain over the last couple of months. He's obtaining enough calories to sustain normal functions but his body is burning every bit he gets so he's not able to "grow". At almost three months old he's only gained a little over 2 pounds since birth. Today we did a weight check and he had gained 4oz in 4 days!! We got excited (especially since he had no weight gain the last two weeks). Unfortunately his liver felt bigger than last time so it's assumed some (if not most) of the gain is fluid. In order to prepare his body the best we can for surgery we need to get calories in. So Mason got a new accessory, a NG tube. Talk about traumatic, watching and listening to him scream as it was placed broke every part of my heart. I know this is what's best for Mason but it doesn't make it any easier. Here's to hoping this thing comes out and stays out after surgery 🙏 #masonstrong #masonmyhero #masonwilliam #cctga #transpositionofthegreatarteriesltype #transpositionofthegreatarteries #ebsteinsanomaly #coarctationoftheaorta #chd #chdwarrior #ngtube #fbmasonstrong2017

The waiting game is probably the most difficult right now. All the unknowns, decisions we have to make, plans we have to set, preparations that need to take place, but can't until we get the "call". It's crazy to think that such a happy baby is fighting so hard day by day to function. He's constantly running a marathon. His atrium is swelling, his liver is enlarged, his blood pressure is off, he is consistently exhausted, but yet he's sooo HAPPY. His smiles are the reasoning that I haven't completely fallen apart. He is my hero! #masonwilliam #masonstrong #fbmasonstrong2017 #masonmyhero #transpositionofthegreatarteries #transpositionofthegreatarteriesltype #ltga #ebsteinsanomaly #coarctationoftheaorta #heartwarrior #chd #chdawareness #1in100 #1istoomany

2 Months. It has been a journey the last two months. From the joy you bring to my life to the fear I fight every appointment. Every day with you is a blessing. You've shown me so much in such a short time. ---- I will make sure to do everything I can to show you how amazing you are. I will do my best to protect you and fight your fights right there beside you. We don't know what the future holds but I know you're a force to reckon with. I love you. #masonwilliam #masonstrong #cctga #transpositionofthegreatarteriesltype #ebsteinsanomaly #coarctationoftheaorta #chd #chdwarrior #heartwarrior

Yesterday evening Mason had what appeared to me as slight blue around his mouth and very strange/abnormal breathing as well as refusing to nurse. After talking with a few people I decided to take him to the ER. When we got there his breathing was back to normal and his stats looked good. I had a video of his prior episode and his bluish tint. We did an x ray where it showed slight fluid on his lungs. We were admitted for observation and to ensure he ate. Today we were released home. I was told that his leaking valve is likely the cause of all his symptoms and he was put on lasix (a diuretic) to help with the extra fluid. The cardiologist informed me that we should begin preparing for more medicines sooner rather than later (how soon we don't know). We follow up with our cardiologist on Wednesday where this mama will have lots of more questions and hopefully some clean cut answers. #chd #chdawareness #masonwilliam #cctga #transpositionofthegreatarteriesltype #transpositionofthegreatarteries #myhero

Most Popular Instagram Hashtags