A Heavy Weekend

This weekend was a bit rough.  Joey went backwards on his oxygen support again. It was determined that he was working too hard, and so his flow went up to 5. The next day, one of his nurses thought he was still working hard to breathe, so she decided that he should go up to 8.  This was a pretty dramatic increase, that I don't think he particularly needed. I think maybe trying a 6 or a 7, may have been a better options first and also easier on his stomach to receive all that flow. When he receives a higher flow, the extra air can blow gas on his stomach.  Even with the higher flow though, he was still pretty irritable.  Daniel and I are convinced that Joey is teething.  As soon as we gave him some teething gel for his gums, he seemed to relax. I think Joey just doesn't have a very high pain tolerance.  Today we focused on making sure he had the teething gel for his gums as a more proactive approach to managing his pain before it affected his respiratory status. His attending physician wants to park him at the 8 until he gets his echocardiogram on Tuesday.

Although Joey's pressure was higher, he seemed to have a very good day. He was still his interactive and vocal self. His oxygen probably still floated around 33, and he was weaned down to 30 percent at one point. We got a lot of snuggle time in too.

Joey lost one of his Trisomy 18 friends yesterday or the day before.  The loss has burned a hole in my heart, as this baby was close to Joey's age and even looked like Joey. It was extremely surprising to hear this news, because it appeared as if this baby were doing well. I am so heartbroken for this family.  I have seen so much death in the hospital since we have been here. It gives me a whole new appreciation for each day that we are given.

Mom snuggles are the best!

Don’t chop off my feet!

Hi y’all!