well, not what we'd planned

Thursday night, around 1am, Samuel had another "episode" - to which the Drs and nursing staff responded by putting Samuel back in the Pediatric Intensive Care Unit.

The consensus among the Drs is that Samuel has been having reflux pretty regularly which often leads to aspiration in small (actually micro is the word that is used) amounts. These micro aspiration events are not necessarily something that we would see happen or after which we would be able to observe a noticeable difference in Samuel. However, the chronic micro aspirations can lead to a cumulative negative effect on the lungs (scar tissue and greater trouble handling future aspirations). Occasionally, Samuel will have a significant aspiration (more than normal but still less than a tablespoon of fluid). The PICU attending physician from today believes that this is what has caused Samuel's troubles as of late.

There is a test that can be run to see whether or not Samuel is aspirating his feeds - a milk study. The basic idea is - as I understand it - to dye his feeds and take a picture several hours later and see where the dye ends up. If it is stomach and below - good deal. If the dye ends up in the lungs, there is only one way that it can get there. If the latter is the case (which we would all expect it to be given what we've seen already), then we have to consider some other feeding options to try and cut down his reflux as much as possible and thereby cut down the risk of aspiration.

Trouble is, at present, it will probably be Tuesday before that study can be done - it being Memorial Day Weekend and all. So, the attending from today (who will be back on Monday) is planning on having us hang out in the PICU until then, just so they can keep their eyes on Samuel.

His condition seems to fluctuate so much these days. Yesterday afternoon and evening he really seemed to us like he was returning to his normal self. He even fell asleep around 8:30pm which is about his normal bedtime at home. We were beginning to think about a Saturday(ish) discharge. Then, bam!, we're back in the PICU.

We are so far from ideal right now. The best case scenario is long gone. We are finding it really difficult to think through decisions that need to be made. It probably isn't best that I tend to write these things after 11 o'clock at night. I probably sound worse off than I really am. But one way or the other, I do know this ... we're tired. Tired physically - Sara slept about 3 hrs last night. Tired emotionally - where's the exit to the roller coaster? Tired relationally - it takes so much energy and effort to think through, plan and coordinate our days that we really don't have much energy left to deal with relational issues with one another. We're tired.

I say all that probably for two reasons. 1) it's true and I think I find some kind of benefit from being able to get it out there, but more importantly 2) we need your prayers. We aren't going to make it if it's up to either one of us. Many friends have been sooooo helpful these days. Even dumped our older two off on a family with 4 kids of their own this afternoon with about 20 minutes of lead time. (God bless the Kykers!) We have been so well taken care of we can't conceive of having done any of this on our own. I can't even get my lawn mowed, but when we got back from hospital this evening I saw that my faithful neighbor (Mr. Tim!) had mowed the whole thing for me! Indeed it is true - 'we get by with a little help from our friends.'

It's also true that we get by with a little help from our families. My brother and his wife and two kids are on the road to TR from Pennsylvania even now as I type. They'll be here for the weekend. We are very much looking forward to their being here. We love them. Our kids love them and they all take good care of us.

We are both staying home tonight since Samuel is back in the PICU. One nurse, two patients - so no real need for the parents to be there. Although when I just called to check up on Samuel, the nurse told me that 3 nurses were in his room trying to get him settled down. Fun fun fun. He is a Beachy baby after all - so he's got a little, ahem, shall we say, spunk.

Well ... enough for now. Hopefully we'll be getting this thing figured out soon and you will be able to go back to reading far more important things online. Until then, thank you for reading ... and for praying.