Today has been the hardest and scariest day I have ever had.....maybe comparable to the day Macy was born. The day my baby was born, I didn't know if she would make it. I didn't today either. I start crying just thinking about what we all went through this morning.
Macy woke up as usual at 5:30 a.m., turned her alarm off, and rolled back over in typical teenager style. I walked in her room to wake her up, she hopped out of bed, and I laid down on her bed. That's how we roll. I'm just there to make sure she gets up and stays up, and then we head downstairs. Nothing seemed out of the ordinary as she headed to the bathroom, however I did hear her do a little cough/throat clearing. Apparently when she got into the restroom she felt extremely nauseous. The nausea caused her to vomit immediately, and it was all blood. She yelled from the bathroom for help. I am not exactly sure if I can clearly recall the events that took place after that, but I remember her vomiting over and over blood for about 5 minutes. McKenna was woken up and told to get dressed. Jeremy and I dressed at one point, and we were out the door on our way to Riley. Macy had stopped vomiting at that point.
While in route I paged our transplant surgery team at Lurie in Chicago and the GI on call at Riley. I spoke to the GI on call in the car, and she was heading down to the ER to meet us when we arrived. Macy started vomiting again at one point during our car trip, and again was all blood. A very large amount. McKenna was sitting in the back with her and clearly very scared.
When we arrived at Riley they were amazing! They got her into a room, and within what seemed like minutes had IV access and labs drawn. Soon after that, another access line in order to give her a blood transfusion. Her hemoglobin was clearly dropping from all of the blood loss, but surprisingly she was holding her own with her stats. As they did all of that, the GI surgeon was on his way in, and they were clearing an OR.
At this point, they knew what was going on. It was esophageal varices. Essentially what that means is, she had extremely dilated veins in her esophagus, and they burst and bled. This can be very common in Abernethy patients that are in portal hypertension, yet extremely life threatening. So due to the liver problem that Macy is currently being treated for, these bleeds can occur. Once they got into the OR, they were able to locate and stop the bleeding. They did a banding procedure on these varices and it greatly reduced the dilated veins.
At this point, she needs to be watched closely following the surgery, so we are here through the weekend. Eating and drinking needs to be monitored closely as well due to the surgery being in the esophagus. At first she was told no food or fluid orally at all today. Then they switched her to clear liquids. She was so happy to finally have something to "eat". She had broth, jello, juice, and a popsicle. She will be able to move onto soft foods hopefully tomorrow, and will do that for a few days.
Dr. Superina's office in Chicago has been in direct contact with our GI team here. The current plan is to return in 6 weeks for another scope and possible banding surgery if needed (same thing we did today). We are no longer "waiting to see what happens" with Macy in regards to her next liver surgery. It will now be in March, or sooner if need be for some reason. Once we have the Rex Shunt in March. Her liver will essentially be fixed. No more portal hypertension and no more chances of having any esophageal varices.
Macy is doing good. I'd love to say she is in high spirits, but she hates the hospital life. She gets really grumpy while we are here, and she just wants to get home. She's also very rattled from what happened today. She admitted to me that she feared for her life. It just breaks my heart to hear her tell me that. No child should ever have to face all that she has faced.
McKenna came to visit tonight. She was in good spirits. I worried about her all day. It was such a scary event this morning, and I am sure she didn't know exactly what was happening, but that it was bad. I asked the counselor at school to check on her and see if she was okay. She was doing fine when she checked on her, so that calmed my mind a little.
Jeremy and I had a very emotional day. I'd love to say that we held each other while we cried, but for some reason we had a very hard time looking at each other today. Every single time we did, we cried. I had to leave the ER room a few times because I just couldn't control it. I am normally very good at holding it together, but I just couldn't today. We both lost it when we told her goodbye as they took her to the OR. I am so big on not frightening her, but then again she needs to understand that it's okay to cry when we are scared. As we hugged her and kissed her with tears in our eyes, she cried too. It was her first and only cry today. She is constantly showing her toughness and her ability to overcome, but it was nice to see her let it out for a moment.
I will never get that vision out of my head of her vomiting this morning. I don't want to let her out of my sight. It took me 10 years to stop checking on her in the middle of the night as she slept, and now I feel like I want to sleep in her bed. I kept saying this morning, "what if that would've happened while she was at school", "what if that would've happened if she were home alone or babysitting McKenna"???? It scares me to death, and I am sure it does her too. I worry about what this event may do to her long term. Her anxiety has been elevated following surgery. We asked for Child Life to come chat with her twice today, once before surgery and once after. I think it helped a little bit.
Please continue to pray for all of us, especially Macy! We don't ask for help, and we don't take it when offered. I know it may sound crazy, and I tell myself we should take people up in their offers. However, we are a very close family unit that leans on each other a lot. It was really hard for Jeremy and McKenna to leave tonight, it's hard to have our family sleep in two different places, but we know it's necessary. So the time we have together, even if it is just to stare at the walls in the hospital, means a lot to us. McKenna worries just as much about Macy as Jeremy and I do, and she is actually happy and excited to come to the hospital. So prayers is all we ask for at this time. Just pray!
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