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A rocky week

posted Jun 21, 2013, 8:29 PM by Melissa Burke
Well, it's been a crazy week for Peter and all of us, but we managed to end on a fairly high note. As I mentioned in the last post, Peter continues to confuse everyone. Tuesday through Thursday he spent the mornings looking utterly sickly (pale, weak, lots of difficulty keeping his oxygen sats up) and the afternoons looking more like himself (pink, alert, better control of his sats). Everyone seems perpexed by his constant ups and downs. We are still on the lookout for something other than the brain injury to blame this on, but so far, all the other tests have been clear. We do have 1 outstanding test that went out to the CDC on Thursday but might take a week or two to get back.
In the meantime, we continue to just watch his behavior. On Thursday, they started him on caffeine (something that is very commonly given to much smaller preemies who are having trouble regulating their breathing) and he seemed to do pretty well on it.  I guess everyone needs their daily dose of coffee!  Downside is the last 2 nights he has had 4-5 hour bouts of inconsolable crying, but we are not yet sure if that might be related to the start of caffeine.  Today (Friday) he had a really good day - he was more alert and less fragile then he had been all week. He managed to keep his oxygen sats in the high 90s for most of the day and was coughing and clearing a lot of his secretions on his own (something he hadn't been doing the last few days). They also started him on Robinul, a drug that will hopefully help to dry up some of his excess secretions so he has less to clear. So again, we are still in wait and see mode, but hopefully moving in the right direction.
Some other good news is that Peter is making his way back to his birth weight. He is now 6 lbs, 0.6 oz - not quite up to his 6 lb, 2 oz birth weight, but close.  They continue to fortify his feeds with a few extra calories in the hopes he will pack on some more weight and get stronger.
James and I continue to be struck by the number of emotions we face on a day to day (often hour by hour) basis. When Peter has a good day (like today) we feel like we can take on the world. When we see him struggling to breathe and looking so pale and weak, we fall to the depths of despair. We find ourselves sitting and watching that oxygen saturation number with such intensity that any slight dip makes our stomachs clench. I continue to pray that as Peter grows stronger he can stop this flip-flopping and put these respiratory issues to rest.  Watching your baby struggling to breathe has to be the most gut-wrenching thing I have ever experienced. Here's hoping that Peter's brain is working in overdrive to relearn how to swallow his secretions and better manage his airway so he can move onto the next to eat!
Peter on Thursday afternoon - wide awake and looking pretty good!
Peter's monitors - we constantly are watching the number on the top right (his O2 sats)
Today he had times at 100% - hooray!!