It's Amy's mom here. Sometimes it's just too hard for Amy to write the blog.....this is one of those days.
This afternoon was characterized by a steady flow of doctors coming in to talk with us. When they weren't in the room, they were gathered in the hallway outside Hope's room discussing her complicated medical state. We spoke to anesthetists, G.I. specialists, cardiologists, intensivists, surgeons and then some. The final decision was that Hope's condition posed too great of a risk for surgery and that she is too compromised, because of her previous experiences with anesthetics, to undergo another anesthetic at this time. Basically, the risks outweighed the benefits.
The thought is that Hope's bleeding is either coming from a varices (extremely dilated sub-mucosal veins in the lower esophagus) or a stomach ulcer (stress ulcer probably a result of the heart surgeries). If it's coming from a varices, then you need to treat it with sclerotherapy during surgery. If it's an ulcer, it is treatable with medication and almost always improves with time. Because Hope is at such a high risk for being put under anesthetic, the surgeons feel, if it proves to be an ulcer, the surgery would be unnecessary and possibly at great cost. They would like to wait until Monday to reassess at that point. If Hope were to have another massive bleed on the weekend, they would have no choice but to operate, but this is not a good option, as the weekend is not staffed with the "A" team that they feel is imperative for Hope. They are treating her with ulcer medications and hoping that there will be no additional bleeding over the next 2 days. She has been put back on the coagulant meds that are used to clot her blood, but they are hoping to stop them and get her back on the blood thinners as soon as possible, so that she will not develop any clots where they shouldn't be.
Hope's portal vein hypertension is felt to be a major issue in all of this. At one point today, in discussions with the various medical personnel, Shawn and Amy were told that Hope is not a candidate for her third open heart surgery and not a candidate for any future heart transplant. They made it very clear that Hope's life span is likely not going to be that long and that there is not much hope for her future. You can imagine how hard it is to hear this news. To say we feel very discouraged is an understatement. Unless God works a miracle in little Hope's life, we may have to say goodbye to her a lot sooner than we ever planned. We have not given up, because we believe that God is able, but we are feeling physically drained and emotionally discouraged.
Amy and Shawn spent much of today in tears before the doctors, begging them to do something and not just let their daughter slowly die. Hope is struggling to breathe on and off and is on constant oxygen once again. She is uncomfortable and irritable through most of the day. It is almost too much to watch at times.
Hope is God's child first. He has trusted her into Shawn and Amy's care. Please pray that He will give them wisdom and discernment as they fight for her life. We are asking the Lord to give them strength and endurance on this most difficult and often discouraging journey. Together, may we never give up hope.