A Roller Coaster Sort of Day- Day 70

Today was a roller coaster sort of day. It started a little bumpy with very interrupted sleep as Daniel was super restless throughout the night. I was a little restless myself, but thankfully neither of us threw up. After a couple cups of coffee I was able to start "coasting" this morning. Brent was still recovering and so the kids and I spent the morning doing some more Christmas-y crafts.

And then at about 1:30 today Daniel woke suddenly from his nap screaming. His alarm was going off and we rushed into his room. He was blue and screaming. Brent turned his oxygen to 6 and he was still blue. I took Daniel from his arms and noticed that I didn't hear the oxygen (usually when it is that high you here it coming out of his nasal cannula) and so I realized he wasn't getting any oxygen. Daniel then "passed out" in my arms completely blue. We called 911 and filled his portable tank. Once we got him switched over to his portable oxygen tank, his Oxygen saturation started to climb up from the 20's. His lips and face were still blue. By the time the paramedics arrived he was in the 90's and doing okay. By the time they left he was himself again. It never gets easier. Words fall flat when I try to describe the emotion that there is in these horribly bad blue spells. An hour after it had happened I was still shaking.

Before his nap, I filled the humidifier for his oxygen tank. When I put it back on it was not lined up perfectly and so oxygen was able to escape. Daniel gets in trouble fast if he does not have some extra help after crying really hard. So that is what happened.

Daniel is doing great again tonight. The best since his surgery last week. And so the roller coaster of his disease continues to take us on unexpected twists and turns and plunges like this afternoon and then coasts happily along again.

Even with my living room full of paramedics again today I wouldn't consider it to be a bad day. Hard. But not bad. There were so many sweet moments too and times that we all laughed. Today I am feeling so ready to be rescued. And so I pray that I would hang in there clinging to my Jesus. Rescue IS coming. I know it. I just do not know when.

Tonight before bed I got this sweet picture of Drew and Daniel...


Drew told me over and over today that he "just wants Daniel to get better". I know that all of this is hard on my kiddos. Please continue to pray for us. Please pray for Brent and I as we walk our family through the twists and turns and plunges that go along with the disease pulmonary hypertension. Today we were reminded again just how fragile Daniel is. And yet he continues to show us that he is also one tough cookie.