The internet is not working at the hospital tonight and so Amy has asked me (Amy's mom) to write the blog for her........
Today was another tough day for Hope. She continues to battle this fever and Tylenol has not been successful, as of yet, in breaking it. She was re-x-rayed today and her x-ray continues to not look good. They are still not ready to make a definitive diagnosis of NEC, at this point, but they worry that that is what she has. Hope's feeds have now been turned off and we are back at ground zero in the feeding department. The plan is to ultrasound her tomorrow and, if the ultrasound looks bad, we will begin full NEC procedure. The reality of this sucks really bad, there is just no nice way to say it. If you have a minute, you can google necrotizing enterocolitis and I'm pretty sure you will come up with the same sentiments.
To make matters even worse, Hope received a positive result for a line infection. This means that her PICC line, which is our only access point, is infected. There is potential that they will have to pull this line. If they do, they will have to take Hope into the OR tomorrow to attempt another insertion. Chances are slim that this will be successful and, when Amy asked the doctor tonight, "What will happen if she has NEC and we have to pull the line?", the doctor answered, "We would be screwed".
Tomorrow is going to be a big day for next steps for Hope. We basically need a miracle to happen overnight once again! We are asking people to pray fervently that her level of infection in the PICC line is low enough that we will be able to treat the infection with strong antibiotics through the infected line - this is the only possibility we have of saving that line. We also need to pray and plead that Hope does not have NEC, as this will put her on long term liquid nutrients, which will always require a PICC line and will eventually begin to attack her liver, which is already comprised because of the portal vein thrombosis. Unfortunately, nothing is simple with Hope's complicated anatomy.
Hope is still very uncomfortable and they think it is because of the pressures in her head. Because she is a cardiac patient, our pain options are limited.....Tylenol or Morphine. Unfortunately, the options in between cannot even be considered. It is so hard to watch little Hope struggle and restlessly toss and turn, as she fights so hard to sleep. I can hardly bear it for a mere couple of hours a day and yet Amy is there 24/7, pushing through the exhaustion and emotional turmoil, all the while being Hope's biggest advocate and voice in the midst of so much confusion and indecision, not to mention the immense heartache and disappointment. The thoughts of going home with little Hope were just around the corner and almost in sight. It's so hard for Shawn and Amy and all of us to accept this latest turn of events.
Again, as I head to bed and try to sleep, I am bombarded with the myriad of unknowns that tomorrow and the days to follow hold. It's in times like these, that I have to remind myself of the things that I DO know. I do know, without a doubt, that God loves our little Hope more than any of us do, and that His heart is breaking right now too, watching her struggle through the pain and discomfort. I know that He deserves our faith and our trust, even when we are straining to make any sense out of our present darkness and uncertainty. I know that He is still good and that He is my Rock, my Deliverer, my Strength, my Portion, my Stronghold, my Friend, and my Healer. I will continue to ask for Him to heal Hope and to move in a mighty miraculous way in her frail little body, like He has done so many times before. And, even if the healing doesn't come, Lord help me to still proclaim, "Blessed be the Name of the Lord".
Please, take some time to bring Hope, her Mom and Dad and her sister Sadie, and her present situation to God in prayer. We know there is literally an army that God Himself has raised up to intercede for Hope and her family and we just ask you now to pray like never before. Oh God, who holds this life in His hands, may it be your will for her to overcome these medical mountains. To You be all the Glory.
"For I am the Lord, your God, who takes hold of your right hand and says to you, "Do not fear; I will help you". - Isaiah 41:13