"So I realized it has been a a few days since I put out an update on Colton. He is getting better and is now back off the cannula and breathing on his own. He has really bad reflux, but seems to be keeping his food down nicely over the past few days. Papa and Nama Lee came down today and got to hold him, which was really nice.
We are working with a speech therapist on mouth control, sucking, and all the things he needs to do before he can eat without the tube, but he picks it up a little more each day. We have learned that he really likes the boppy...I think he just likes to sit up and not lay down so much. He is much more alert and likes to be awake more of the time now, which I guess is right now that he is a month old. He has one heck of a grip and is a pretty strong little guy."
"Ok friends. It has been a pretty crazy weekend. On Friday afternoon, Colton began having issues with his oxygen levels again. They put him back on the RAM cannula and he has been on it since. On Saturday morning, they did another echocardiogram and his heart looked great. All the shunting was gone, meaning the PPHN has passed. That was good news, but it also means something else is behind all the issues he is having. Yesterday, we spoke with the pulmonologist as well as the ENT specialist to setup some tests for today.
Today we did a bronchoscopy to get a clearer picture of his throat, esophagus, and lungs. Then we did a CT scan of his chest and lungs to see if it showed anything. The good news is that both tests showed he is structurally sound. The bad news is that we don't know right now what is causing his issues. We have an upper GI and swallow test scheduled for Wednesday to see if he has issues with reflux or swallowing his food.
Today's test were bittersweet. We are so thankful that he does not have any structural issues with his lungs or throat, but we do not have any answers either. Please continue to pray that we gain insight into the root cause of his issues so we can begin to get little man healed and home!"
"Colton continues to get stronger every day. He is still breathing on his own and they have increased his feedings almost back to where they were last week. He is still learning how to eat from momma, but gets better at it every time he tries.
We are very thankful for how far he has come and how well he is doing. It is really awesome to see God's healing power in action and a comfort to know He is with our little boy."
"Colton is doing great. We are now extubated (let's keep it that way) and are on a little more powerful nasal cannula called a RAM. Hopefully tomorrow we will go back to the regular nasal cannula.....he likes it a lot better than the RAM. Also, Colton's blood cultures came back negative today for bacterial infection, so if tomorrow's do too, it means he beat the infection.
My little guy is one tough cookie. He continues to amaze us and beat anything that gets thrown his way."
"And the roller coaster continues. Up and down, up and down, up....Colton is doing better today. He is off the nitric again now and his stats are amazing. If he continues like this overnight, they may remove the tubes tomorrow and go back to the cannula.
He does have a bacterial infection that he is fighting and as he has proven, he is a heavyweight. He will kicks its butt and keep going."
"Colton continues to get better. Today, we got to wear our big boy clothes and weaned some more on our meds. I got to give him a bath which was pretty cool and scary at the same time. He likes the warm water, but doesn't like when I gotta get all up in his chubby chin and arms. We did learn that he really likes to sit up, instead of being on his back. So cool....learn something new about him every day."
"Colton is doing amazing! His central line is out, he is almost completely off the oxygen, and they are going to move him to a crib sometime later today. We can now bring in his blanket, some clothes, etc. The next steps are to see how he takes to bottle feeding and weaning off his medications. We are hoping he can go home sometime towards the end of next week if everything continues like it is. What a blessing!"
"Colton is extubated! And if that wasn't enough good news, we got to hold him today! He now has a nasal cannula that provides oxygen, but no longer has the tubes down his throat, which I think he likes. His throat is very sore, so when he tries to cry, not much sound comes out but that should all change over the next few days.
Tomorrow, we will get to hold him some more, this time skin to skin. We have to wait until they remove his central line for that, but that should be sometime tomorrow morning. God is answering our prayers daily and we thank you all for lifting Colton up in your prayers."
"Colton is fighting hard. He is now completely off the nitric oxide and is continuing to wean on the oxygen. If he continues to progress like he is today, they can hopefully take out the tubes tomorrow and go to a nasal cannula. He looks so much more comfortable now and it is really a blessing to see our little boy more at peace."
On September 26, 2013, our family was given the gift of life, our nephew....Colton Franklin Lee. After his birth, Colton experienced challenges with circulating oxygen through his body and was immediately taken into NICU. Shortly after, he was diagnosed with a condition called "Persistent Pulmonary Hypertension in a Newborn" or PPHN. On September 27, 2013, Colton was transferred by helicopter from his birth hospital in Athens, Ga to Augusta, Ga where he has remains in critical care. As Colton's Aunt and Uncle, we thought we could help The Lee family with the mounting medical and travel expenses by creating this page. This will also serve as a vehicle of communication as Colton's health progresses. Thank you for taking the time to view this page and share amongst friends and family. God Bless..... -TeamColt