Feeling Better!

Smiles!

With my Mommy.

Getting ready for my bath!

Asleep after his bath!

Thankfully whatever effected Caelin earlier this week seems to be gone. The past few days he has pretty much been back to his normal self with better health and temperament. He is on a more appropriate sleep and awake schedule, is tolerating 8 mL/hr feeds, has been full of smiles, and playing more.

On Friday, Cael had an echocardiogram. Dr. Wilmot told us Cael’s function looks better, his heart looks a little smaller, but he still has mild Tricuspid Valve regurgitation. Although overall he is pleased with Cael’s heart. After this conversation, he brought Caelin down on the Milrinone (heart squeezing IV medication) from 1 to 0.75.

He has been weaned off of the VapoTherm completely. The past few days they were able to wean down on the flow and the oxygen so he was moved to a wall cannula. He is currently at 2 liters and 24% oxygen. This is giving him just a little extra support to ensure he will successfully breathe on his own in a couple days. We are so anxious for the cannula to come off his face but we do want to make sure he will be completely comfortable and stable.

His feeds made it up to 10mL/hr yesterday; however, over night he retched a lot. He would retch while awake or asleep and he did not sleep as soundly as the night before. Knowing his stomach was not handling this amount well, we went back down to 8mL/hr. Before his Aortic Arch repair, it took Caelin 5 weeks to handle 18mL/hr. Now, having been off feeds for 4 weeks, we expect Cael’s body to be slow to adjust to feeding and we are actually impressed he has already made it to 8mL comfortably.

Cael’s Physical therapist, Judy, and Occupational therapist, Abby, have re-assessed him and started working with him again. They help to loosen and strengthen his body because it is more tight and weak since his third surgery. Cael enjoys their company and they are great with him.  Although Cael is physically a little behind, Abby and Judy seem to be impressed with his progress. They reassure Mommy and Daddy that we have done a good job helping Cael and they  have provided us with more stretches and exercises to help Cael more!

We are hoping that tomorrow Julie from Speech Therapy will start formula taste with Cael again. She has checked in on him a couple times since his code five weeks ago, but Caelin has not been allowed to take anything by mouth. Now that he is off the VapoTherm and on the low-flow cannula he is allowed to taste.

This morning (Sunday) they started Cael’s wean off Methadone and Valium. Instead of lowering the doses they have spaced them out. He now receives each dose every 8 hours instead of every 6; so he gets three doses of each medication spaced throughout the day (essentially one every 4 hours).

We are in shock with where Cael was just a few days ago and where he is now. His progress is remarkable. His strength, resilience and determination paired with all of your love and prayers have made all the difference! Thank you for your continued support and prayers as our son's heart continues to improve and his body continues to heal. He is so fragile and things can change quickly but we are thankful and blessed for days like these- where Cael can be Cael, our strong, smiling, bright-eyed, beautiful baby boy.

As requested by many of Cael's inspired, lovable and faithful friends, a fund has been created for him. Your contribution will be used to help carry Caelin through his challenging journey. This may include medical bills, hypoallergenic formula, medications, equipment, and other necessary elements toward his promising future. Your contribution will also help ensure Cael will get the constant love, support, and attention he requires. Please do not feel obligated to provide financial support, as your uplifting words and faithful support are more than appreciated. This option was inspired by the increasing expenses caused by Cael's condition and by the many who have offered to supply support in this manner. The “donation” button is located on the left side of Cael’s blog and is through PayPal. Thank you all for loving and supporting our son!