11/28 - AM Update - Recovering

So - it looks as if we are more noticeabley in the recovery phase of this 2.5 week journey. It has finally been more than 24 hours without any set-backs in the weaning process. Emily is off her pain killer, she is on full feeds, there are no signs of infection, and she is doing well on the BiPAP. We have to wean her down on the BiPAP settings, but that is not a real big deal. There is also some congestion in her right lung, a good reminder of how important her respiratory treatments are. The only thing we are really waiting on is for her to be completely off Valium as well. We have to do some planning before we go home, however, b/c she has different needs now. We are considering a different route for her diet, something that every SMA family has to deal with at some point, and there may be a greater O2 need on a regular basis once we get home. We'll have to see.

Last night some folks gathered to pray for us. Thank you so much. There have been nights of seeming emotional and spiritual destitution, but last night was not one of them. We slept and dreamt well. There is no doubt in my mind that the many, many prayers that have been given for us have been showering us with grace and comfort during these two weeks and more. Also, thank you all for the generous donations to Emily's Medical Fund. There are many unforeseen costs with these situations from medical to personal -- it is an incredible blessing to not have to worry that much about finances. Thanks again!


Anonymous said…
I am so glad that things are looking better - I was kind of worried on Thanksgiving about Emily and you and Diana and Annabelle, but God is teaching me not to worry but to pray instead and then I read the blog this afternoon and was encouraged! How do you cope with the why, nate? I have been wondering "why" these past couple of weeks b/c we have a friend here in CO (who also goes to City Pres) who only has couple of weeks left to live b/c he's dying of lukemia . . . I wonder why God is taking our friend (whose name is Martin) and why God took our baby so soon (in October, I was only six weeks). I don't understand and have trouble with being unselfish in my attitude towards our friend Martin, who probably doesn't want to die either, but it pops up every now and then. I was just curious and hopefully you can give me whatever knowledge you have on this subject. Even if you don't have all the answers - I was just "bouncing" it off of you.
I think about you all often and pray for you, Diana, Annabelle and Emily