Nov 9, 2011 -Jacob has not been doing great for the last few days, and Andy and I felt like something was amiss even though everyone reassured us things were fine. Well, finally his blood gases were consistanly trending in the wrong directions and the doctors became increasingly concerned too. It is unclear what is the matter, but after a gammet of tests, it looks as though Jacob possibly has pneumonia or some other infection. He was put on the oscillator last night in the hopes of improving his CO2 levels (which had been in the high 70s) but instead of improving, they went up into the low 100s-the highest they have ever been. It was decided the oscillator was only making things worse, and he did the best when being "bagged." So he was put back on the conventional ventilator but with major vent setting changes. The change to the oscillator was very hard to accept at this point in Jacob's journey. It is more common for babies to need the oscillator early on. After 2 weeks of holding pretty steady, we felt we were going to be able to escape the more invasive and scary machines. We feel like we are losing any headway Jacob had made, and in some sense, we worry that CDH may have a stronger grip on our baby than we had thought. That scares us to death! Jacob is on antibiotics again and there have been some small CO2 changes in the right direction. He will also be getting a small blood transfusion to help boost his oxygen levels and help flush out fluids he is retaining. Hopefully, we will see some positive changes by this evening.
My sweet boy looks so terrible. He is very puffy, his face is cringed (despite the morphine and lorazepam), and he just looks "sick." He even has an IV in his head. It was torturous to see his little boddy rattle with the oscillator but is no easier seeing my tiny boy just lay there huffing away fighting so hard to breathe on his own with the ventilator. Such a big fight for such a tiny human.