We are good! Many have been asking about how Macy is doing and how she is feeling. She is good! She says she feels like herself. She is getting her color back some, but still looks pale to me. However so does McKenna, lol. It is winter in Indiana! It can take a while for her hemoglobin to return to normal after her blood loss. Her GI doctor said even though she had a blood transfusion, she will lack iron following all of this. They placed her on a therapeutic dose until we return for the scope. I had to reduce it some because it was causing pain in her abdomen. She was getting 2 pills in the morning, followed by pain and bloating, and then 1 pill at night. I reduced her to 1 pill morning and 1 at night, and the pains have gone away. Her scope is scheduled for January 10th. It will be early in the morning. If she needs banding done, she will stay over night. If nothing needs to be done, she will go home later that day. (Surgery #29)
We've loved a little bit of normalcy lately. We had Christmas with Mamaw and Papaw, and Christmas with the great-grandparents, aunts, uncles, and cousins. We went on a Christmas light scavenger hunt, and sat around in our pajamas watching movies and playing with new games and crafts. It's help to take our minds off of things. I wish it helped control my random crying when I talk about her, or the worry of a repeat. I'm working on that.
I've had a few people ask questions such as "what are the symptoms to watch for", "was she vomiting streaks of blood", "does she have cirrhosis of her liver", "what will the surgery in March do for her", and "why didn't they do the surgery from the beginning"???????? Great questions.....so here goes.......
There are no symptoms at all. The only way you would ever know that this was a possibility of ever happening was to have a GI scope and take a look at her esophagus. And no, she has never had a scope. Even with all that she has going on, including Celiac Disease. We skipped the scope and biopsy usually done for Celiac patients because we didn't want to put her through another surgery. It was as decision made together with our GI doctor. The only way to know you have a rupture is when it happens. No, she was not vomiting streaks of blood, it was pure blood. It was like something out of a horrible, horrible nightmare. Pure blood. If you Google "esophageal varices" you will most likely find info on people with cirrhosis of the liver (damage done to the liver, inability to function normally). Macy has these due to portal hypertension (high pressure in her veins). She was purposefully put in hypertension to force the veins to grow around her liver and get blood flow to her liver. In March, she will have a vein taken from another part of her body and placed as her portal vein. The portal vein is the main vein that carries blood to your liver. Originally hers was the size of a thread, it is now larger, but will never be large enough. Dr. Superina couldn't do this during the first liver surgery because her liver was undersized and so were the veins in it. If he were to reroute the blood to it, it would've been completely overwhelmed. Therefore he slowly rerouted blood to the liver, giving it time to grow. The liver is currently normal sized, and the veins in the liver are good sized as well. Obviously the negative to this first procedure is that the portal vein still hasn't grown to full size (an most likely never will), and it has put her in portal hypertension for a long time. Long enough to cause other problems such as these varices. After the surgery in March, her liver should be functioning normally, with no more portal hypertension and no more risk for esophageal varices.
So what can you pray for? Pray for Macy to continue to stay healthy, with no complications until our scope on January 10th. Pray for Macy to have a successful scope on January 10th. Pray for health and safety until mid-March for her next livery surgery. Pray for a successful liver surgery in mid-March with a normally functioning following. Please continue to pray! Thanks for continuing to support and follow our journey. I don't respond to all of the love and prayers sent out way, but I read each and every one of them. Thank you!!!!
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