Monday, June 16th - Emotional Roller Coaster

We were told early, and often, that we were going to go through an "emotional roller coaster" of ups and downs with having a CDH (congenital diaphragmatic hernia) baby and her treatment. There have never been truer words spoken.

If you remember, we started today with a collapsed right lung, the lowest O2 saturation levels we had ever seen for Kinley and the bowels in her chest were full of air. Exactly the opposite of what we want, but hard work and new vent settings helped to remove the air from her bowels and start her lung back on the track of opening up.

This afternoon Kinley had a new treatment to try and open her lungs. It is called the "open lung tool." What it is is an adjustment of her ventilator for a brief amount of time. The rate of breaths remains the same, but the pressure is turned up pretty high. An x-ray is scheduled for 9:00 pm to see how her right lung looks after the open lung tool treatment. We are guessing that it will look good because her oxygen sats have gone up.

This roller coaster is making me sick. Kinley is bleeding internally from being extubated and intubated earlier this morning. We have been assured that this is nothing to be overly concerned about for right now, but it is hard not to be concerned when your baby is bleeding from some where that you can't see and she is on heparin. Diane has been able to suction a small amount of blood from Kinley's breathing tube and a fair amount is coming from her OG tube (the tube that goes from Kinley's mouth to her stomach). The blood coming from the OG tube is dark and appears to be old. That is a good sign that she does not have a major bleed that is constantly bleeding. Kinley did get a cut in her mouth when she was re-intubated this morning and we are guessing that she is swallowing the blood from her mouth and that is why it is coming up through her OG tube. After Diane finished her suctioning, Kinley's oxygen saturation went up to 100%. I don't know if Kinley has ever been that high before. Hold on to those roller coaster handles.

The 9:00 pm x-ray shows that the bottom half of Kinley's lung is open and clear, but the upper lobe is still congested or collapsed. Dr. P is here tonight and she is happy with Kinley's turn around from this morning. She is not sure which treatment we will move forward with to try and open that upper lobe, but she is confident that we should move forward with surgery (while on ECMO) on Wednesday afternoon. Possible future treatments would be IPV to loosen and move any mucus, open lung tool to try and open the upper lobe or another bronchoscopy to literally see why the upper lobe is not open. Kathy and I are a little concerned about the IPV treatment because last time it appeared to move mucus from the congested area into the open areas. This is how it is supposed to work, but we want to make sure as much of Kinley's lung as possible is open and clear for after surgery so she can have a speedy recovery. We are more concerned about another bronchoscopy because Kinley is already bleeding and we do not want to make it any worse by doing more work in her throat. Whichever path we go down we feel confident that Kinley's doctors are making the best decisions possible.

Once Kinley is asleep, Kathy and I head home around 10:30 pm for a little shut eye with Angel and Aimee to watch over her. Kinley oxygen saturation is still holding strong in the upper 90s. Let's hope they are still there when we return tomorrow.