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.

Carson had another good night! I am not sure if he gained weight or not, but things seemed to go well with his 6 hour trial. They are going to let him go 9 hours on CPAP from 12 am to 9 am and then get a blood gas after that. These trials are still with his 4 of PEEP plus but no rate. We will continue to pray he gains lots of weight and tolerates the CPAP well. 

Kellen had another good day with Dad and Mom!

First of all, ooops, correction on what I said yesterday. Carson actually is getting to trial CPAP each morning from 12 am to 6 am. I was wrong when I said he wouldn't get a chance again until Friday am. However, the physician is just taking away his rate of 2 and leaving his PEEP plus of 4 for each of these trials. He is getting a little more than CPAP, but they still consider it a trial of CPAP. On Friday, they may let him try 12 am to 8 am depending upon how these next couple of days go. This morning he did great but was breathing a little faster than they would like. They are concerned he won't gain weight because he is breathing so fast. We need to pray he keeps on packing on the weight. If he doesn't gain weight, even if the blood gases are good, they still won't let him wean anymore. No changes today to his ventilator. They are going to just keep letting him trial in the morning and then we will see how his blood gas is on Friday morning. He did do well with his bottle and took 60 ML from his bottle this morning. He also had another echocardiogram to check his heart and for any signs of pulmonary hypertension that he had in the beginning. It was completely normal.

On a very positive note for Elizabeth and Preston, Kellen went 6 hours between eating last night. Hip hip hooray for some much needed sleep. ;)

wow

Praise Jesus and thank you for all your prayers. Carson had a wonderful 3 hours on CPAP. His carbon dioxide was 51 after 3 hours, which was better than it had been with the last gas on his ventilator. We are ecstatic. The great part was when they turned him onto CPAP, all he got was his the PEEP (peak end expiratory pressure) and oxygen. The doctor actually wanted him to still get his pressure of 6 PEEP plus while on the CPAP but there was a miscommunication. So Carson did even better than expected. Even though he did so well, they do not want to rush him and will not trial CPAP again until Friday morning from midnight to 6 am. Then they will get another blood gas and see how he does. According to the neonatologists, dropping the last 2 of the rate can be harder for the patient to handle. Today, they dropped his PEEP plus to 4 and he continues on a rate of 2. 

They discontinued his potassium and will be reducing his sodium he gets in his feeds, because his levels are normalizing. 

Still no word on Kellen and when his surgery might be. 

Keep up the amazing prayers...Friday will be another big day for Carson.

less vent, but a hernia too

Exciting news! Carson went down on his ventilator to a rate of 2 and PEEP plus of 6. That is a pretty big change in and of itself. However, the doctors are going to trial CPAP from 2 am to 5 am Tuesday morning. By the time most of you read this, it will already be done, but we appreciate all your prayers for the future. They still believe it will take about a week or more to wean all the way to CPAP. I think they are going to try the CPAP route rather than "sprinting" and just increase the time on CPAP if Carson tolerates it. They will get a blood gas Tuesday morning (tomorrow) at 5 am to see how he handles the trial to CPAP. Be praying, it is a big step for Carson. :)  We are all really excited for him and just hope it goes well. All in God's time! He also did much better on taking his bottle today and took 50 mL in the morning and 47 mL in the evening from his bottle. He had been having a lot of reflux and getting upset, so this is also progress. His weight is about 9 lbs 4 oz.

Kellen had his appointment with Dr. Yang today. He does have an inguinal hernia and umbilical hernia. They have elected to have them surgically repaired while they are in St. Louis. The inguinal hernia could become an emergency and rather than getting all the back to Dexter and having it become an emergency, they have decided to have it repaired now. This surgery is fairly low risk, but he will have to stay in the hospital one night. Unfortunately, it will be on a different floor than where Carson is so the boys won't get to see each other. We do not know the date yet. The office will be calling Liz and Preston to schedule sometime in the next 2 weeks. We can all be praying it is a smooth and routine procedure for Kellen. He weighed 9 lbs 12 oz and was 21 inches long.

Again, thank you for your amazing support and encouragement for our families. We truly appreciate it!

Posted by Sarah

great news, some explanation of the vent, and a first bath!

We have excellent news! Thank you, Jesus!!! Carson's liver ultrasound came back completely normal. All the vessels in his liver are patent (open) and have no evidence of any clots. The size of the liver has also normalized and is no longer enlarged. YEAH!!!! We are so thankful for this news. The neonatologists believe Carson no longer needs his Lovenox (the shot he gets every day to prevent the clot from getting bigger). We are so thankful because it is hard to watch the little fella get a shot each day. There was some talk of continuing Lovenox for 6 months as a precaution, but as long as it is safe for Carson, we would love it for there to be no more shots. 

The kidney ultrasound was completely normal as well. His tumor markers have gone from 3,000 to 300 now, so this is also fantastic news indicating no recurrence of the tumor.

As mentioned his blood gas was very good on Friday. As of right now, Carson has a rate of 5 on his ventilator, PIP of 24, PEEP 6, and PEEP plus of 8. His oxygen is at 30 to 35%. 

Ignore this if you don't care or already understand, but I have had several questions about what all this means on the ventilator. The rate of 5 is the number of breaths the ventilator gives every minute and each breath the ventilator gives is a pressure of 24 (PIP). Carson is breathing between 60 to 70 times each minute, so only 5 of those are fully from the ventilator. The doctors are just weaning the rate and when it gets down to 0 then the PIP won't matter because he won't have any ventilator initiated breaths. The other breaths Carson initiates, but the ventilator still provides support through the PEEP and PEEP plus. The PEEP is the peak end expiratory pressure (pressure left in the lungs at the end of exhalation) and makes sure Carson maintains open alveoli (where oxygen and carbon dioxide exchange occurs in the lungs or little lung sacs). According to Dr. Yang, this should not be a problem for Carson, because Dr. Yang does not feel Carson will have any problems with the collapse of his alveoli. Therefore, we don't have to be as concerned with weaning the PEEP. The PEEP plus is the pressure the ventilator gives each time Carson initiates a breath (all but the 5 breaths the ventilator gives each minute). It just helps him get the necessary tidal volume in each breath, or in other words, a deep enough breath. Room air (what we all breathe is 21% Oxygen) will be the goal with Carson, but he is requiring 30-35% oxygen (not bad at all, considering), but they will keep weaning that as they are able.

The plan right now is to wean this afternoon to a rate of 4 and then tomorrow to a rate of 2. Then, the doctors will start weaning his PEEP plus again. This plan has changed multiple times, so we will see, but essentially the weaning process is focused mostly on the rate and PEEP plus. After they get to an appropriate level (not exactly sure where that is b/c it isn't set in stone, but more of an overall feeling that Carson is ready), they will either do CPAP trial or "sprinting". CPAP would be continuous positive airway pressure and can also have added oxygen. "Sprinting" is where they will do a trach collar (no airway support) for an hour at a time and then put him back on the ventilator at his weaned settings. Gradually as he tolerates it, they increase the amount of time on a trach collar and decrease the amount of time on the ventilator until you wean away from the ventilator entirely. I am unsure if you can add supplemental oxygen to a trach collar, but I would think you would be able to. Hopefully, that helps explain the weaning process a little better.

There will be another blood gas on Tuesday to see how he is doing (planned blood gases are on Tuesdays and Fridays). This could be a very big week for Carson if he continues to make the progress that he has the last couple weeks. We may get to try something other than the ventilator. We will just wait and see. Thank you from all of the Clarks and Bunches for all your prayers.

Kellen has his doctor's appointment tomorrow, Monday, at 2:30 PM to talk to Dr. Yang about a hernia repair. We will keep you posted.

Posted by Sarah

I'm not so sure about this bath thing here, Dad!
(Carson having his first bath)