Good things in 4111

It is with a big smile and a huge sigh of relief that I type this update. Prayers were and definitely are still being answered. I’m so amazed at seeing God work in room 4111 daily. Not even a week ago Creed was extubated. As exciting as that day was, it also came with a great amount of fear. This was a place we had already been twice before, and thought we were on the home stretch. Both times within a few days Creed was reintubated and once again the future was unknown. So you can imagine how gun shy we were when the time came to take him off the breathing machine and allow him to show us what he could do. This time he has soared. His lungs are healthier and he is getting stronger and stronger everyday. Right now he sleeps on a bipap machine which gives him a little added pressure during the night. During the day, he is on a high flow nasal canula. The settings on both of these machines are being weaned down, but at “Creed’s speed”. The doctors have learned that Creed is always in control, no matter how hard you push him. If he doesn’t want to do it, he’s not. Talk about a strong willed child. Geesh… So now that we are all on the same page, things have gone amazingly smooth. Creed has tolerated all the weans and continues to make progress everyday. Please understand that through this all he is still very weak and is having to once again go through physical therapy to strengthen his muscles. He’s having to learn to hold his head up, sit up in a chair, things that he could do over and over all day before all of this. He is still not able to eat or drink. The doctors won’t allow this until he can have a swallow study to make sure he won’t aspirate. The swallow study can’t be done until he’s weaned a little more. At first Creed was pretty much on repeat with, “I want water, I want cherry coke or I want gatoraide”, we have spent the last few days trying to explain to him why he couldn’t have those things yet. Today while getting a breathing treatment he looked over at me and said, “mom, is this helping me be able to drink?” I smiled and told him “yep, that’s how your lungs get stronger and stronger.” I feel like he’s made peace with that for now. We’ll see. He can however, have lollipops, and these help tons. Until the swallow study, he is being feed through an NG tube (tube in his nose) and his central line.

Today the doctors were actually talking about what’s next. Where we are going. Do we even need to go back to BMT (bone marrow transplant unit) before heading over to Scottish Rite for inpatient rehab. That still hasn’t been decided. Creed will get therapy about 6 hours a day over there. This will get him back up running around and being silly. I can’t wait!!!!! We should probably know more maybe this weekend or next week. We still have a long way to go, but he has already come so far. I’m estatic with his progress this week. Seeing him sitting up in his wheelchair coloring was the best! He loves to draw and color, I’ve missed seeing him do that. All these little things leads me to say this… THANK YOU THANK YOU THANK YOU, I know that without your prayers we wouldn’t be here right now. God has heard our cries and has chosen to heal Creed. I wish I could share all the feelings I get from the beeps from the prayer pager, how it warms my heart and provides comfort. When I would have moments of doubt or uncertainty that pager would go off reminding me that God is bigger than any fear I may have. He’s bigger than any problem that was in our room and he’s big enough to heal Creed. It is a constant reminder of how great our God is. Thank you for showing me God’s love and for comforting us with your comments and prayers. We’re still on the journey to healthier days, and who knows when we’ll get there. I just know that sitting on the front row has shown me things that I would have never been able to see anywhere else. I hope you all have been able to see glimpses of these things through me. I would love to share them all with you. I’ve tried to the best I could through this blog. Thank you all again!!! Much love, Creed’s mom