Hip hip hooray!

Carson got to trial the trach collar for 2 hours! 

What a sweet and precious boy. Liz said he did very well and did not notice any changes while he was on the trach collar. He will have another 2 hour trial with it tomorrow. Friday morning, they will get a blood gas to make sure he is doing well on CPAP and his trials with the trach collar. 

Let's be praying together that the blood gas looks great!  

Thank you so much!

blood gas update...good news!

Carson spent 29 hours on CPAP and had a pretty good blood gas at 5 am this morning. As a result, the doctors are going to keep him on CPAP for now. If all goes as planned and he tolerates this well, tomorrow from 10am to noon, he will get to trial a trach collar with oxygen. Very exciting!!!!!!!!!! 

We will just keep praying for his ability to breathe and tolerate less assistance from machines. His G-tube has not leaked today which is another answer to prayers.

Praise the Lord!!!

Carson's carbon dioxide after his 12-hour trial of true CPAP was 58!!! That is within the acceptable range, so the doctors decided to continue with true CPAP for the rest of today. At 5 am in the morning, he will get another blood gas. If he has a good blood gas, he will stay on CPAP. 

Thank you Jesus! 

Even better, if it is good, they will consider starting to wean him to the trach collar. We are so thankful and excited. 

Be praying for his lungs to continue to heal and him to keep doing as well as he is. His chest X-ray had not changed from the last one, so still some chronic lung disease. His G-tube did not have any major leakages today, so that is wonderful. 

We will see what tomorrow holds, but so far, this has been excellent news.

coupla cute pictures!!

Indeed.
(Our little man Carson)

Well hello there world.
(Our little man Kellen)

Please be praying for Carson's G-tube

Poor little guy is such a fighter and doing fantastic on his CPAP trials. I was truly impressed with how well he did. Rarely did he have any desaturations even when he was upset. However, his G-tube began leaking last night. He lost a portion of 4 of his feeds, so he never really got a full belly. They replaced the G-tube and sutured it in place this morning and he had one feed with no leaks. However, if he has anymore leaks, they will need to take him to surgery and do a more invasive procedure to try to fix it. If he has to go to surgery, we lose a lot of the progress he has made in the last two weeks on weaning to CPAP, because he would be under anesthesia and sedation. We are praying this will fix the problem, but if it is going to continue to have issues with leaking, we can get it surgically repaired now rather than a couple more weeks into the weaning process.

It also is difficult for him to gain weight when he isn't getting a full feeding and they are monitoring his weight to ensure he isn't working too hard to breathe. In regards to CPAP trials, he has moved down to a PEEP plus of 2 (he was at 4). His PEEP is still 6 and rate of 2. During his trial, they will actually do full CPAP and take away all of his pressure support except for PEEP of 6 and his oxygen (which is still on about 30-35%). Then they will increase the amount of time on full CPAP until he is on it completely, hopefully in the next few days.

I had some questions about the trach collar, so for those interested here is my understanding and I am not as familiar with this so it may not be perfectly accurate. Once he is on CPAP, then the goal is to wean to a trach collar which basically just provides humidity for his airway. You can also attach oxygen to the trach collar so he could continue with that as needed. At that point, he would not have any pressure support. Once he gets on CPAP he will only have a PEEP of 6, so it is weaning off the PEEP to get to a trach collar. As he gets better, then they would be able to wean the oxygen until he can be on room air. He would still have his tracheostomy, but a lot less airway support. He will need to be off oxygen and all airway support for awhile (at least 3 months from the individuals I have spoken to) before considering removal of his tracheostomy.

Kellen is doing very well. Liz and Preston are troopers. They have been so patient throughout this process.

Thank you for your prayers! Have a good Sunday.

Posted by Sarah

Another good night for Carson! Nine hours on modified CPAP went well. Tonight, they are going to do another 9 hours and then do 12 tomorrow night. They have now moved the timeline up. The doctors are hoping to be on CPAP 24 hours a day by the end of the week and then trialing a trach collar soon. 

Praise the Lord. Carson's weight is about 9 lbs 6 oz now.

Thank you everyone for praying!

Carson had another wonderful night. His blood gas for carbon dioxide is 57. That is still very good and the doctors were pleased. He gained 55 grams, so that was also another really good sign. They are going to continue the 9 hours of CPAP trial tonight and Sat night. Sunday night and Monday morning, they will go to 12 hours with CPAP trial. If all goes as planned, they believe the first week of February he could be on CPAP with no pressure support. 

Also, Preston has the magic touch with the bottle. Carson took 73 mL from the bottle and his total feed is 78. What fantastic news.

Kellen has surgery scheduled for his hernias on February 7th. We can begin praying for no complications and a wonderful result for him.