One step forward... two steps back

Saturday December 13th. Colton had a good day. We were able to wean down the settings on the NAVA since his blood gases looked pretty good. He got another dose of lasix in preparation to extubate him (take out the breathing tube) on Sunday. He seemed to be tolerating his feedings pretty well, so we increased the amount that he was getting to 8 ml every 3 hours. He was still having some feeding left over, but not enough to bug him.

We went home for a couple of hours and got to see Marley ( our dog). A huge thank you to our neighbors for taking Marley into their home and treating him as one of theirs. We don't know what we would do without you guys!  When we came back up to the hospital, my parents brought us dinner and visited with Colton.

Sunday, December 14th started off as an exciting day. Colton's blood gases looked good and his chest xray was ok, so the decision was made to extubate him. He was kept on the same mode, NAVA, to help with his breathing, but now it was without the breathing tube and with a nasal cannula. It was so nice to be able to see his face without all of the tape on it. The breathing tube came out at 9:30 in the morning.

Initially, Colton did ok without having his breathing tube, but he was starting to work harder to breathe. He has a lot of secretions (spit) that he really doesn't know what to do with yet and they tend to pool in the back of his throat making it harder for him to breathe. They got a blood gas at 2pm and made some adjustments to his settings on the NAVA. We kept him sleeping on his belly since he breathes better that way (never, ever do that with a baby at home!). We had to continually suck the spit out of the back of his throat, but that didn't seem to be helping him toward the end of the day. At 6pm they did another blood gas. This gas was not good. Colton needed more support. A discussion was had about what we could try and we made a decision to try to increase his support on the NAVA, but Colton took that decision and said no way. He tried to cough up some of the secretions in his lungs and his feeding came with it. He was breathing harder and harder, when he did breathe. The decision was made to put back in his breathing tube. 

So the breathing tube was put back in around 7 pm . When the breathing tube is put in a chest xray is done to make sure it's in the right place. The chest xray showed that it was in the right place, but it also showed that the right upper lobe of his lung had collapsed again. The increased settings on the ventilator were done to help open his lung again. His blood gases throughout the night were not good and his settings were continually increased. 

Colton's feedings were left at 8ml every 3 hours and then we skipped a feeding when the breathing tube was put back in to give him a break. He really didn't tolerate his feedings for the rest of the night. He had too much left in his tummy at the next feeding. 

After he was working so hard to breathe, Colton didn't move too much. He was so worn out from trying to keep up. 

Monday, December 15th: This morning's blood gas was not good. Another chest xray was done which showed that the right upper lobe of his lung was still collapsed and not exchanging oxygen. The pressure setting on the ventilator was increased and he was placed on his left side to try to get some air to go into the right side. They also started something called CPT or chest physiotherapy. Basically, Colton gets vibrated every 6 hours to try to break up some of the secretions in his right lobe. Another chest xray was done this afternoon to see if that area had opened up. It was better, but not completely open. The ventilator settings continue to be on the higher end and Colton is not breathing over the ventilator. That's ok for now. He needs to rest and get better.

His feedings were stopped because he kept having higher and higher residuals (feeds left in his tummy) throughout the night and morning.

Colton got some laboratory studies done this morning. One of those was to check his hematocrit. The hematocrit shows the part of the blood that carries oxygen. His was on the low side so he got more blood today. To give the blood the nurses had to place another IV. He was a little stubborn with this one and it had to be placed in his scalp. It's just on the surface and does not go into his head. In fact they are some of the easiest IVs to start. The blood went in just fine and he will get another hematocrit check here shortly. The plan for the rest of the night is to let him sleep and chill out.

Please continue to pray for Colton and for us. He's got a long road ahead of him. We are staying at Colton's side as much as we can. Thank you for all the offers to do things for us, we truly appreciate it!