Much Needed Rest

We're home and the girls are fast asleep. Blake and his dad are hanging out in our room and I'm stopping here for a moment to catch everyone up on our weekend. It was well worth the 30 mile jaunt to the lake. We laughed, we played, we rested and re-connected after all of our on again off again time spent in Omaha throughout the last 3 months of the year. It was so much fun we're thinking of doing the same thing next weekend. Nothing blesses my heart more than to spend time with our kids. All of us together. Making memories.

Ash is doing ok. She's not great and I'm not even sure that she's good, but she's ok. Its been a long time since my head laid down on the pillow at night without a heaviness in my heart. It seems that the relaxing, almost comfortable place we found ourselves in last summer is gone. I just hope its not gone for good. She just isn't the same. Her body hurts. It aches a lot. We can't touch her without her bracing herself and wincing in pain. Not occasionally, but every time we go to pick her up, scoot her over, get her dressed, bathe her, or anything. That in itself is enough to break my heart. She hasn't had any sort of therapy since becoming ill in October and Dave and I know she needs it, but at the same time are hesitant to put her through it because of her physical discomfort. She has days where she laughs and giggles and then she has days that she just can't manage a smile. The heaviness in my heart comes from not knowing what exactly has changed inside of her. I know her bowel became sick. I know it is struggling to recover. I know all of that, but something else is making her hurt. I kind of think it has to do with the medications she is being forced to be on , but still with no end in sight my heart hurts wondering if this discomfort will ever end. I also wonder if healing will happen. If she will recover completely from this rejection or if we have seen it get as good as its going to get. Either way I'm tormented daily with fear of our return to Omaha and never knowing when it will come or if that sense of peace I had this past summer will ever come back.

She continues her dumping and need for lots and lots of IV fluid replacement. In addition to the dumping, we are suspicious that her SVC syndrome has returned. Her face became extremely swollen around Friday morning and has not gone down. I'm thinking she has developed another blood clot. Possibly around the PIC line that has been in her arm since the first week in October. She doesn't look any thing like herself which is why I haven't shared any pictures lately. Tonight after changing her line dressing and cap, I flushed her line and went to check on the blood return and had none. I worked on the line for over 20 minutes and still could get no blood return. It flushes well, but won't return blood. Dave and I are hoping that it will by morning(after her TPN and fluids are run over night) because her lab work is due to be drawn at 8am. If it doesn't then we will have to take her in and have the line worked on. I'm assuming in Shreveport since those surgeons put it in for us. In that case her lab work will be late and not drawn until Tuesday, putting everything behind for the week. It all makes me a little sick to my stomach since I know that we are meticulous with her lines and have no explanation for why it won't return blood.

Anyway, our time away together was much needed. We laughed. A lot. Dave and I found ourselves giggling late into the night as we discussed how much Blake was just like him, and how much he was just like his dad. The whole scenario that played out yesterday afternoon had us in tears as we laughed about it together. I couldn't help but pause for a moment and burn that memory of the two of us snorting with tears in our eyes snuggled up in our bed in the RV. I really love this man and I couldn't imagine a better father than he. He truly is an incredible person and my kids are really, really blessed.

I guess I'll go lay my head down and pray for some rest to come. The kind of rest that comes when your heart is light and no longer burden because you have learned how to lay them down at the Father's feet. I really need that kind of rest right now. I long to have our summer days back where Ash was well and not recovering from rejection. Although I tried to appreciate them while they were here, I'm wondering if I wasn't thankful enough for the gift of those carefree days? If only I could have have those days again. Or some like them.

Goodnight my friends. I hope your weekends were blessed and full of time with your families. Take care. Trish