...she might have something viral in her gut. Just a guess, but when holding her I can hear and feel her gut rolling and rumbling. She can't keep anything down and her stool output is climbing. So like I said it just a guess, but I'm suspicious.
Can I just share with you how incredibly disappointed I am? Honestly, I am. We were SO CLOSE! She had been free from coughs, vomiting, fevers, runny nose, etc. for about the last 10 days. No breathing treatments or rattles in her chests. She was turning a corner and looking good. She was making HUGE progress in her feeds. We had made it all the way to 70cc an hour with TPN being weaned all the back to only 10 hours a day. SO CLOSE! Our goal is 80ccs an hour. Now we have to stop feedings, ramp up the TPN and try to stay on top of fluid losses. You can't feed an rumbly tummy that vomits when the food hits it and a gut that is stooling out faster than you can push it in. Instead of a full bag of formula hanging from her IV pole this morning she has a full bag of TPN and IV support fluids. I am disappointed. There is no getting around that fact.
On top of this nonsense that began yesterday afternoon her lab work shows that her Hemoglobin and Hematacrit are really, really low. Her hemoglobin is only 7.9. We received orders from Nebraska to run a lot of extra labs to look at her iron and saturations and lots of other stuff I've never heard of. They haven't sent us in for a transfusion, but I think its just around the corner unless her body kicks into over drive and does some blood making this weekend. Ugh!
I so desperately want Ash to get out of this cycle. Its been going on since October of last year and she needs to catch a break. A break longer than 10 days. Thats been her longest stretch of "health" in all of that time.
It is for these reasons and these reasons only that I was hesitant to leave her this weekend. I more than anyone look forward to time away with Dave. He's awesome! He's my best friend and makes me laugh like no one else. We are as solid as they come and spending time together is something we both want and need. On the other hand, you can't just pass a kid like Ash off to anyone. We don't have respite care or nursing care that comes in to help us. Not that we want it. We are Ash's parents and we like caring for her, but even if we wanted that help its not affordable to us at this time. That's just not real life. If Ashley did not have a central line then I would have taken this trip. I'm comfortable with his parents changing her ostomy, giving meds via her g-tube and even if need be having them pop a mickey button back into her tummy if it accidentally came out(which does happen more often then you might think). A central line is a whole different story. Dave and I were trained early on(back in our NICU) days how vital this line is. It is not something that can be taken lightly. It is serious business that can cost a patient their life. We are so careful with her line. God has blessed us with some major protection in Ash's life. She has had a line for all but a few months of her 3 and 1/2 years and has only had 1 line infection. She may have one now which is why we sent the cultures. Anytime they spike a fever with a line in place you have to rule it out. To place such a huge responsibility on a grandparent who has never flushed a line, prepared and connected a bag of TPN or IV fluids to a line is not fair. Its just not. I know they could do it, but its not fair to ask them too.
There will come a day when our weekend get aways will return. Until then we will continue hanging out on our couch together, holding hands and laughing at old re-runs of Everybody Loves Raymond. Watching our kids play ball each week, playing with our baby together each evening and sneaking out to dinner to discuss the heavier thoughts that plague our minds in those private moments. Life is good, it is blessed, and we are happy. We love our God, our family, our children, and our life. Even when it gets a little messy(like today).
Thanks so much for praying for our sweet Ashley. My hope is that she bounces back at any minute and we can pick back up where we left off. Thank you for your encouragement. Enjoy your weekends and your families. Take care. Trish