What do I say about today? This picture is how I found Greyson when I came in. Looking all cute and sitting up in bed (again with help) eyes WIDE open looking at me. Stacy took his temperature and it was great so we began to work on his diaper and found one VERY large diaper. We have heard many diaper stories that you would call, “went up the backside” (you parents will understand that I’m sure!) well what we found was something no one warned us about, it can be “up the frontside” as well as the back! Man what a mess.
So we got him all changed and he got his breathing treatment, we tucked him in and Stacy left to go pump. I was asking the nurse about his chest X-ray when I heard Greysons monitor alarm. Nothing new here happens all the time. Well when I looked up at the monitor I immediatly realized it was not his oxygen saturation. Weird cause that is what is always alarming. It only took a half a second to realize that it was his heart rate that was alarming. Greyson’s heartrate shouldn’t be below 100 yet it was alarming because it was only 87. I stepped over to his crib (about two steps at most) and began to massage his chest while continuing to watch the monitor. I looked at Greyson and he still looked pink so I wasn’t worried. Then I looked back at the monitor (by this time the RT who was right there was looking) and Greyson’s oxygen level was reading 23 percent (shouldn’t be below 87, under 80 is considered a de-sat) his heart rate was still low and when I looked back at Greyson he was clearly not doing well. I’m not sure I ever said that you can tell when his oxygen level is low by looking around his eyes and his lips. If his level is low they will begin to turn a little blue. Well I didn’t have to look at his eyes or his lips as his whole face was purple. NOT COOL. The RT gave him extra oxygen, unhooked his cpap and bagged him and soon his numbers came back up. All of this took about 30 seconds, which doesn’t sound long until your watching this type of event. Scary just doesn’t seem to capture the moment properly, but it’s all I have.
Greyson has had a few of these episodes lately. This is kind of strange as he is old enough that he should have outgrown this type of behavior. So what we believe is happening is that he is refluxing and when that happens it is not only painful and agitating to him but can cause all this other stuff as well. I forgot to mention that yesterday they reduced his feeding to three hours worth of food given over one hour. Today they changed it back hoping this might help with the reflux. If it continues to be a problem or gets worse they will give him medicine for it, or do a study to make sure it is reflux. Reflux is extremely common in preemies as the valve that keeps stuff in their stomach is weak and they have a tube down it that is keeping it open to put the food in with.
Last nights blood gas was good, c02 of 60. Tonights will be interesting as Greyson was on the nasal canula 2 different times today for a couple hours. It’s late so I’ll stay up and get the numbers here in a couple minutes. Sorry I probably won’t come back out to the computer and post them on the blog so you’ll have to wait till tomorrow.
Today was a somewhat brutal reminder that this is going to be a very long process. Greyson’s due date is next wednesday and he will not make it home by then. As of now we are hoping early February. Even once he comes home he will not a “typical” baby. He will be on oxygen and we will have to be EXTREMELY careful with him for the first couple of years. I know it will have its difficult times, but right now we just desperately want to get to a place where we can bring him home. Of course we only want him to come home when he is stable (no more episodes like today, especially without nurses right there to help him through it!). Sometimes I forget that as good as he is doing he is still in the NICU, they don’t call it the intensive care unit for nothing.
Oh really quick, nothing significant about the X-ray. Greyson has chronic lung disease which we already knew.