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.

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.