What a day...

Little Conner had a tough day. He was scheduled to ex-tubate at 9:00 a.m. this morning so the Docs put him on NPO, meaning no food or medication. Well 9:00 came and went. There was another little baby that was having trouble breathing so of course she was priority. I fully understood this, in meantime though Conner was having a hard time waiting. He was uncomfortable and kept crying and clamping down so his Oxygen Saturation levels kept dipping down into the 30's and 40's. Finally at 2:00 they were ready to ex-tubate. The poor little guy was clamping down as they pulled the tube out. He was like a fish out of water. His little feet were turning purple. He was struggling for breath because of his throat being so swollen from the tube being in the last 2 weeks. It was hard for them to know this until ex-tubation. They tried a high flow nasal cannula but that was not doing enough. Thirty minutes after extubating they had to re-intubate. The Dr. said he was doing all the breathing for him towards the end of the thirty minutes. It was hard to watch. Because he wasn't able to fully fill his lungs they were not able to get a good indication whether or not his diaphragm was working. They are going to do an ultra sound tomorrow to check it out. They will give him steroids for a couple of days and then try again.

I have some friends that just found out today that their daughter Kapri is going on ECMO which is a machine that will breathe for her and make her heart beat. She will either bleed out and die from this, make it through and find she has lung disease, or it will give here a break and she will be able to heal more. Her options are running out. It was so sad to see her crying. I can somewhat understand her pain from when we were told there was nothing much they could do for Conner at Seattle Children's. I was mourning for a week until we learned of Dr. Hanley. Please keep this little family in your prayers. They need comfort and strength to make it through the next little while. Kapri's twin brother has been a comfort to them. In the midst of all this there has been a miracle. They were originally told that he also had a heart defect. Today he had an Echo and was told that he indeed does not. There is always a ray of sunshine in the midst of a storm!

We have truly felt all the love and support and are very grateful to all of you near and far! The church here in Palo Alto has been very supportive with their phone calls and visits. Our great friends Jenny and Marshall have been awesome as usual! We have gone over a couple of times to visit with them. It has been a nice distraction to hang with them and play with their cute girls. It brings comfort to know even far from home we can call someone if we need anything. What a blessing...