Tuesday, January 1, 2013, day 100

100 days and 100 nights. We have been at children’s in the ICU for 100 days and tonight makes 100 nights. I have slept in a recliner in an ICU for the past 94 nights. We have been apart as a family for a good part of that time. Maddie has changed so much and is a little girl now instead of my petite toddler. Madison daily exceeds our wildest dreams. She is a treasure. Emma has been through so much. She has had surgeries and procedures done that no one should face. She has done all of her growing in her little hospital bed.

I can’t wait to see what God has planned for our family in 2013. I have so much hope and am looking forward to each day.

Jason has been working a lot lately and he hasn’t been able to visit since Christmas. I am hopeful that he will be able to come visit soon.

Emma and I rang in the New Year together from our penthouse at Children’s. She slept and I watched the wonderful fireworks display in downtown Dallas. Of course, Emma’s room had the best view and all of the nurses piled in to catch a glimpse of the festivities.

Emma continues to limp along on her dialysis. Her iv access in her leg has leaked continuously for weeks. Sometimes it will go 30 hours before needing a dressing change and other times it will only make it an hour and a half. On Friday, most of her meds were moved from her iv to by mouth. Or by feeding tube in our case. Emma had an extra iv put in her left hand so she could still receive heparin to keep her from clotting her other vessels. She is being transitioned to Coumadin, by mouth, to eliminate the need for an iv and heparin. That leaves 2 things going in through the line in her leg – albumin and an anti fungal medication.

The main line in her leg is only working halfway and even then probably not. It had two ports. One of the ports quit working entirely on Friday. And the second one would not draw blood. That started the big push to move as much to by mouth as possible. Emma’s nutrition has also been advanced very quickly over the last several days. The hope is that optimizing her nutrition will enable her liver to produce enough albumin. This would eliminate the need for an iv infusion of albumin. Thankfully, Emma tolerated the influx of medication and feed fortification really well. It seems that we will be able to continue with all of that.

Due to the failure of both ports to draw blood they have adjusted her lab schedule to 2x a week. This is good for her since there is no other way left to draw blood except to stick her very fragile veins in her hands and her feet. However, if there are big swings in her blood levels we will not have a way to know it. This could pose a problem and is risky.

Emma had a culture taken of her dialysis fluid/waste that she drains out. It was positive for fungal growth. A fungal infection would completely stop us in our tracks and would make it literally impossible for her to have dialysis. The doctors have her on oral and iv anti fungal meds in hopes of catching anything before it goes crazy. Subsequent cultures, taken before the medications were started, have not grown anything. This is great news and hopefully she doesn’t really have an infection brewing.

I am optimistic about Emma’s situation. The doctors of course are not. The only difference is that I know God is soo big, there is nothing He cannot do! He is in control. I do not believe that He is through with His plan for Emma.

My New Year is filled with HOPE! Thank you Jesus for giving us HOPE in YOU!