"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."
You hear people say "you just need a good night's sleep and you'll feel brand new tomorrow." Well, I don't think he feels brand new, but Colton is having a much better day today. He is all the way back down to 40% on the oxygen, 2.9 on the nitric, and is staying pretty calm today. I really hope he can get off the nitric so they can remove the tubes down his throat....I think that will really reduce his agitation. Please continue the "prayers for progress" campaign....it is working!
"The roller coaster continues. We took another step back today. Colton is completely off the sedative now (they didn't want him to become addicted) and is on a different medication now. The switch has left him very irritated and is causing his stats to drop a bit. We had to increase his oxygen levels a bit to help him out while he gets used to the change. They are going to give him a different medicine so they can try to get him completely off the nitric in a few days. Please pray that he takes well to the new medicine and becomes less irritable so he can rest.
Thank you for your continued prayers and support. They mean so much to Rachel and I and our family."
"So, we made a small step today down to 5 on the nitric. We didn't make a whole lot of progression today, but we didn't go backwards either. There were two big items on the agenda for today.......
1. Colton finally took another dump, which allows him to go up on his feedings.
2. Colton let one rip and it made some noise.
Both small accomplishments, but pretty awesome nonetheless.
In all seriousness though, he is still ultra sensitive to touch and does not like when the nurses or doctors move him. Please pray that he begins to be more receptive to disturbances. This is one of the major roadblocks right now.
One more thing, did I mention that they weighed him last night and he was right under 11 lbs. he has gained some water weight since he got here, but little man is stacked."
"Another very strong day for Colton today. They have reduced his oxygen levels down to 42% and his nitric oxide to 10 (which is almost half what it was). It was very nerve racking today as they weaned him so quick, but he was up for it and continues to get better each hour."
"Today has been another strong day for Colton. He has been weaned down to 78% oxygen, but at slower intervals than before and it seems to be a much better pace for him. All his gas tests today came back very good and seems to be much more receptive to touch and disturbances than he has been. He has also begun feeding breast milk every three hours and is taking to it very well. This will help make him stronger as he recovers.
I ask you all to continue prayers for Colton, but please lift up my wonderful wife as well. She has been so strong through this whole ordeal, even as she recovers herself. Please pray that she continues to get the rest she needs. Her faith and strength are truly amazing and are a great example of the power Christ can give us.
I want to thank you all for your continued support and prayers. We are truly a blessed family and can't wait until we can celebrate a healthy family all together."
"Today is going better than yesterday. We will be moving slowly, but we are progressing. Colton is much more receptive to touch today, which is a great sign. We also got the great news that they are going to give him breast milk tonight!
I gave him the Herb Brooks speech this morning which got him somewhat riled up at first, but now I think he is just determined."
"So, today has been exhausting and it is only 5pm. Colton was doing great this morning and they had reduced his oxygen down to 74%, but then we went a little backwards and are back up to 90%. They just did an echocardiogram and his heart looks structurally good, so that is good news. The nurses said that us having to go back up is Colton's way of telling them that we are weaning too fast, so we are slowing down a bit. For those that are wondering, his condition is known as "Persistent Pulmonary Hypertension in a Newborn" or PPHN. Please continue all the prayers.....they are greatly appreciated."
"What a great day! Colton is now down to 80% on his oxygen and the respirator has been reduced from 40 bmp down to 30, meaning he is breathing more on his own. He is moving more today now that he is off the paralytic and seems to be very happy. I can't describe the joy of seeing him move and open his eyes and look up at me and Rachel. We still have a long way to go, but we are headed in the right direction. Rachel and I want to thank everyone for the prayers and support. We are truly blessed to have so many wonderful friends and family to support us and Colton. God bless!"
"Doing great today. He is down to 90% oxygen and they will keep taking him down 2% each hour as long as everything remains ok. They took him off the paralytic, so he is able to move his arms and kick his legs, and even decided to open his eyes long enough to give a quick glance to mom and dad. His eyes are still blue like dad's! Praying that his progress continues and that the nurses and doctor's understand God's time for this healing process and act accordingly."
"So, last night we took a step back to take a step forward. Because my "little" boy is so big, they had to replace his breathing tube with a bigger one because too much air was escaping back out. This meant that he went back to 100% oxygen. The good news is that his tests this morning were so good, that they have already reduced him down to 98% and will continue to reduce 2% every hour as long as all his vitals and tests remain good.
On a little lighter note, I woke up and cannot get John Lennon's "Beautiful Boy" out of my head."
"It has been a good day today. The last time they did Colton's blood/gas test, it was good so they reduced his oxygen by 2%. Also, I got to change his diaper! Never thought I would be so happy to do that. Rachel got to hold his head and legs, which was really the first touch we have gotten to do since he got down here. It has really been a blessed day. Thank you all for the prayers. Next step is at 11:00 pm tonight. They will do another test and possibly reduce his oxygen more."
"Colton is doing good today. His oxygen levels in his blood are around 157, which the Dr is happy with anything 80-100 or higher. If his next blood gas is good (6 hours from now), they will adjust his oxygen down a little bit to start the weening process. Not going to be a whole lot of change today, but he is doing good so far. Please keep up the prayers....God can and is doing great things down here!
"We all made it to Augusta ok. Colton did not like the move from his transfer bed to his new bed, so they had to give him Nitric Oxide and now he is stable with all vitals looking good. Please pray that he continues to improve and begin breathing on his own."
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
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