We Can't Take it Anymore

Yesterday was the best day that we have had in a long time.  His oxygen saturation was at 100% most of the day and they were able to wean the oxygen on the oscillator to 45%.  We were on cloud 9 and it was so great to see some real progress.  They were getting ready to come down on the pressures on the oscillator if he continued to stay the same.  We came back from a break at 11:00 pm last night and he was back up to 100% oxygen on the oscillator and they could not get his oxygen saturation into the 90's.  He continued the downward trend and they had to go back up on the oscillator pressures and he just didn't have a good night after that.  We called at both 4 and 6 this morning and he still wasn't doing that good.  When we got here he was doing a little better but he just has not recovered.  They did not do the echo yesterday but finally came today and just finished about 20 mins ago.  He is now acidotic which is not good and they can't figure out why.  On top of all that they rolled him over a little bit and he has some sores (skin breakdowns) on his head.  The wound team has taken a look at it but we are not sure when we will hear the results from that.  Hopefully we will get those results back soon along with the echo.  We are so frustrated and we know there are going to be ups and downs but it is just getting a little more difficult.  I will try to post some current pictures today.  One bright note is that we were able to meet two cdh survivor babies today.  This morning we met Brooklyn which is the daughter of Lindsey that we have talked about in previous posts and also we met Cade who is 15 months and had most of the same doctors as Brodie.  They were sitting next to us in the food court and I kept hearing them say Dr. O (Brodie's surgeon), MRI , and stroke.  We eventually asked them and found out that Cade was a cdh survivor and it was great to hear his story.  I can't tell you how great it makes us feel to see these two beautiful babies and know that they went through the same thing as Brodie.  We know that each cdh baby is different but it gives us hope to see these two miracle babies.  It is amazing how God puts people in your path just at the exact time that you need them.  Sometimes you can feel like you are on an island all by yourself and that nobody knows what you are going through.  To not only see the babies but to also talk to the moms and see that they went through some of the same things it is comforting.  We will keep you updated and ar thankful for all of the prayers.