37

We never would have thought it to be possible, but Maggie is on the ventilator now for her 37th day. Luckily for us, Maggie is pretty strong.

During Maggie's most recent major bleed (3 weeks ago now) the doctor who stood at the foot of Maggie's bed (barking orders, directing traffic), trying frantically to keep her alive, made an interesting observation. As Maggie was actively vomiting large quantities of blood and having blood, platelets, fluids, and medicine crammed into her, heavily sedated, she apparently just laid there staring at the doctor the whole time (for several hours)--with her eyes open! The doctor shared with us later that she knew as that was happening that "Maggie is a different kind of girl." A real trooper and inspiration to us all.

Our strength, however, is all but gone. As we have been reminded, our strength comes from God, who is with us, cares for us, and has a plan. We know this. But our energy waxes and wanes with every digit on the monitor, every report from the doctors. Today we are drained. Whitney is coming off of being sick for a day and a half (food poisoning? Flu? Exhaustion?) and I am having a hard time imagining this situation ever concluding. Maggie was up half of the night last night, which would be fine, except that she has been thrashing her body and head around and risking her breathing tube coming out. So everyone kept a close eye on her, gave her LOTS of drugs, and I sat and tried to keep her calm. Today they added a new sedative, and they have basically exhausted all options. There isn't much more to add to keep her calm. Much of the morning, she still thrashed around--and they are talking about putting her on a paralytic medicine again--the same one that has made her blood gases crash. If they have to use it, they are going to have to kick her ventilator settings up significantly to keep her from having her CO2 skyrocket.

The other problem, and the source of my dejection, is that Maggie's chest x-ray was bad today. Much cloudier than yesterday. They wonder if a subtle difference in the angle of the picture accounts for some of this, but she has also seen her oxygen saturations drop 4 points and her CO2 has risen 10-15. They have decided that she needs to be significantly dried out with diuretics. Now a "grape," she needs to be a "raisin", and she needs to stay that way until they can get her extubated. As they said it, babies with this severe of a lung injury need to be really dry in order to maintain lung function. She doesn't really look like she is holding extra fluids anymore, but I guess she is. So today she's on some new diuretics and they are being pretty aggressive with it. That's the plan. The discussion at rounds this morning was not comforting as her acute lung injury (it's not really an illness anymore, but an injury) is now likely worthy of the title "chronic." I hope that they still believe that they can get her off the ventilator, but it doesn't seem as easy as we thought it might be by this time. If they get her extubated, it will remain to be seen how much of the injury is permanent, and whether or not they'll have to give her a tracheotomy to keep a reliable airway (also to allow us to go home on a ventilator if needed). At rounds this morning they said that it would be nice at this stage if they could give her steroids again (remember, that helped her lungs a lot, but also caused the massive bleeds). It is kind of upsetting that they would even have to talk about that again, but of course, she's not a candidate for steroids anymore.

I am now starting to approach the computer to update the blog knowing that I could easily write something sarcastic, full of pity, angry at our situation...you name it. I could also paint a rosy picture--Maggie can still recover, after all. But we just feel depressed, worn, and numb. Each day we hope that a major corner is near, but we continue to struggle. A day of hope is typically followed by 3 days of setbacks. That's the way it has been. Each attending doctor that begins the week seem to have an idea about when Maggie will be extubated. The first estimate that we received was more than 2 weeks ago. It would surely happen this past week, according to several. Easter Sunday is here, and we're not all that close anymore. We're hoping that she's not going to continue to get worse, in fact.

We are still hopeful, positive, and being faithful. But this is the best, most reassuring post that I could muster.

Please keep praying for our sweet little energetic, feisty Maggie.