Me being philosophical

Today I spoke with Dr. Mike's office. He has been stalking our hospital notes, and he couldn't believe that Lincoln was really functioning with half of a valve. An 8mm hole for his blood to flow through instead of 16mm! And then they were asking how the doctors knew. It all started with RSV/pneumonia visit. They wanted to check and ensure it wasn't endocarditis. So they caught sight of his numbers elevated even more than they were a few weeks before his illnesses. And wanted a follow-up appointment. Which led us to surgery. And probably prevented him having a heart-failure surgery in the middle of the night without our A-team scheduled. The people I trust with his life. 

Sometimes miracles happen in crappy circumstances that lead to His grace. Lincoln was functioning with half of a valve, not gaining weight, and still smiling every day. That is the true essence of a warrior. Battling through pain, failure, and adversity to survive. I could not be more proud of him and his CHD journey. This toddler is not only a warrior, but survived 

insurmountable odds. CHD sucks, but With God's Grace & Miraculous Ways, Lincoln's hot mess of a heart is still God's masterpiece. Xoxo

Two steps forward, one step back... 💙

Lincoln got to get his pacer wires out, and a new chest tube inserted. Two steps forward, one step back. We just put his Heparin drip back on & begin Coumadin this evening. He has already released a lot of fluid from the effusion, so we are glad they decided to do the procedure. 

Lincoln is so crabby and uncomfortable -it's been hard to face another day of him being miserable & inconsolable. The only thing he has answered yes to all day is being in my arms. Which, I will say, is an awesome feeling - grumpy boy or not :) 

Morning Rounds 3.26

The X-Ray this morning showed fluid around Lincoln's right lung. That is probably why he is still struggling to take full breaths on his own. They are going to do a procedure today to put a new chest tube in to drain that fluid, to remove his pacers, & they will have to sedate him for that. They also had to stop his heparin to do the procedure, so there's kind of a lot going on this morning. Dr. Haw said he should feel a ton better once the fluid is drained.

 His heart is still looking great, though, and he gets to take a big dose of Coumadin tonight, if everything goes well today. Heparin has been a pain to monitor & maintain a therapeutic level,so we are thankful to get him back on Coumadin. 

Thanks again for your prayers, messages, meals, and gifts. We greatly appreciate it all, and it truly is helping us get through this difficult time. Xoxo 

I finally get to hold my baby!

I finally have my sweet baby boy in my arms! Within seconds, he fell asleep. Hopefully it will be good for his spirits since he kept asking me yesterday to pick him up. I know it has helped mine! 

We can't pick him up underneath his arms for 6 weeks, so it is difficult between that and the tubes/wires. But we are snuggling away, carefully & happily! 

Rounds 3.25

Lincoln is very sleepy after a restless night last night. And when he is awake, he is very crabby. We are trying to get him to eat, but he doesn't have much of an appetite. 

The doctors want to watch him on the 8th floor another day. He has a pericardial infusion (fluid buildup) that they are watching, and using LASIK to try and eliminate. I guess it is very normal after OHS. His puffiness has gone down tremendously, and his heart Arrhythmia has fixed itself. His pain management is being watched closely, because after 3 OHS so close together, it is extremely painful. 

He is such a trooper, and is such a rockstar with all he's endured. It has been a grueling week, but each day brings more hope. Thank you for all of the prayers, meals, messages, & gifts. We truly appreciate every gesture of kindness. Xoxo 

Moving in the right Direction

Lincoln has been in a lot of pain today, so they upped his pain medication. He is pretty irritable, but was finally able to take a good rest this afternoon. 

They took out two of his chest tubes, one from his hand, and his catheter. They also took him off three of his meds. His heart has been in great rhythm all day, and he's been talking in a drugged state all day. Mostly bossing us around :) so we are really hopeful to keep progressing along. His liquids are still limited, but he is asking for water quite a bit. Mostly wanting milk (which he can't have). I was even able to feed him applesauce. So we are headed in the right direction! Thank you for your prayers. They are working. 

Morning Rounds

Lincoln had a pretty uneventful night! He kept trying to wake up from sedation, so this morning, they took him off of the breathing machines & out of sedation. He  is trying to get the junk out of his lungs, and is pretty agitated by pain & frustration of wires. 

That being said, the doctors and physician's assistant are optimistic from his echo and X~Ray this morning. They are starting his heparin drip, and his chest tubes have stopped draining as much. He is still swollen, but not nearly as puffy as he was as a baby after surgery. 

Trying to hang in here today- hoping and praying his heart rhythms continue to balance out, and he stays relatively calm as he becomes more awake. And if you know Lincoln-  that would be a miracle in itself. Thank you for your prayers, thoughts, meals, gifts, and messages. We greatly appreciate it. Xoxo