Over the weekend

It was unlike me not to let everybody know about this when it happened, but our days were all off b/c of it. Thur night I was at the ER with Annabelle till 3AM b/c she was having hard time breathing -- probably some environmental reaction to GLOBAL WARMING... just kidding -- it was a typical asthmatic or allergy type thing and with some steriods and Albuterol neb treatments she is fine. She can also lift 300 lb weights now, but they said that'd wear off after about a week or so.

So I slept in on Fri which was a good call b/c we ended up with the ER with Emily Fri night till about 3AM b/c she couldn't breath well. Yippie, life is so fun! It was actually a good visit. They wanted to put us in the PICU again and we said "no." They tested some blood, her urine, and did a chest X-ray and everything looked good so we are treating her for any potential bacterial infection and giving her steroid nebs too. She's lost her voice b/c they tried a few times to get an IV line in, unsuccessfully. We asked them to stop trying b/c she didn't really need an IV anyway. Next time I will just tell them not to put one in unless it is absolutely necessary b/c it just causes her a lot of unnecessary pain and irritates us. There was a short period of time where they didn't want us to feed her b/c that is the typical procedure when you get to the ER, but we had a helpful nurse that pressed the issue until the Dr. agreed (at least that is how it appeared to us).

SO - we are back home and Emily has been doing very well. We continue her treatments every 4 hours, but we are giving her some extra time on the BiPAP if she'll let us so she can relax a bit.

That was an informative entry and not very revealing. Here's your window into the "real stuff." We feel spent. Not so much with Emily's situation, but with how to live this life this way as a family. How does ANYTHING in life align itself with the care of a terminally ill child? So it is hard to know where the heck we're going with all of this. We don't know where the end is and we don't even know if it matters where the end is. All that matters is taking care of Emily, right? Well, what about the other good things that we feel deeply about?? It can all be very confusing if you can imagine. Why live where we do when it is so expensive to be here? Why develop career skills that I have no intention of using in the future. I believe that God is taking this somewhere, but not know where that is can drive me crazy sometimes... most of the time.

Peace <><


Shanna said…
Hey Nathan, I wanted to write to tell you that I am and have been praying everyday for you and your family. I sent a message to you when you were in Colorado, but don't know if you remember it. I knew you when you were wee child in Washingon State. I was a member of Highline Presbysterian Church when you were born. I fell in love with you right away when I saw you as a baby. Somewhere in my home I have a small wooden frame with a picture of you sitting on the edge on my kitchen counter. You were about 2 or 3 years of and had blond hair, red sports coat, and the sweetest smile. You were a blessing to me then and I pray through my prayers for you, Diane, Annabelle and Emily I can be just a little blessing to you. Thank you for sharing the hurts, the frustrations and the joy of your everyday life. You are special to me even if you don't remember who I am. I still stay in contact with you mom and dad. I told your mom I was going to send you a piece of mail. She encouraged me to do so. Thank you for reading this. Thank you for making your life an open book. I have been in awe of how the Lord has used your family to bless me and I know it has blessed so many others. The Lord has a great work planned for you. In fact, I believe you are in the midst of it now and the life schooling you are in the middle of is going to be what the Lord uses to move you forward in His Name. I love you and your family. Thank you again for your updates and letting everyone know how we can continue to pray for you.

Shanna Allers-Petrus
Port Orchard, WA