First of all, thank you all for the many prayers and well wishes we received for our family and mostly Macy. It means the world to have so much support! Thank you Mamaw for staying with McKenna and loving her while we couldn't be there!
It was a whirlwind of a trip to and from Chicago. Are you wondering why we travel to Chicago when we have Riley and Peyton Manning Children's Hospital right here in Indy? The liver condition that Macy has is extremely rare. When I say rare, I mean like 35 diagnosed cases in the world when she was diagnosed in 2008. A case study from 2014 that I read indicated that since the first discovery in 1793, only 80 cases have been described. Which I am sure many cases early on went undiagnosed, and some still do. Nevertheless, extremely rare. We found another girl who had this same condition, and her mother told us about Dr. Superina in Chicago who claimed he could fix this. Everyone else told us that she needed a transplant. So off to Chicago we went, and that's why we keep going back.
Our morning started off a little rough with the nurses taking labs, and then coming back for more because they missed a couple. They told us that they didn't need a urine sample, so Macy went to the bathroom, and then they said she did. It was all kind of a mess, which if you know me well you know I am not about disorganization. I didn't let it consume my worries though, because my focus was on Macy. All my worries and prayers were for her. This was surgery #27 for our girl, and it never gets easier. Never!
The surgery was supposed to last about 1-2 hours. I calmly prayed and read my Kindle for the first hour and half. By the 2 hour mark I was standing and staring toward the door. By 2 hours and 30 minutes, I had enough and asked the receptionist for some news. Fully expecting her to say that Macy was in recovery and they would be coming to get us soon. "She's still in the operating room." Ummmmm, what?!?!?! She said someone should be giving me an update. They called the front desk to speak to me. I have horrible flashbacks about getting phone calls in the waiting room from Macy's first surgery, the surgery that my baby came out of with a tracheotomy. Anyway, they informed me that she went to sleep peacefully, and they had finished the biopsy, and venogram through her neck area. They needed better pictures and were currently going in through her abdomen. She was doing very well though. I sat for 5 minutes, and then was back up pacing. The surgery took 4 hours. Double what it was supposed to be! Oh my nerves!
Macy had a lot of pain following surgery and said she felt like she was having trouble breathing. It continued in the recovery room, and then also when they moved us into extended recovery. Her numbers were good, her hemoglobin was good, and she sounded great. The doctor informed us that when they went through her abdomen, some blood leaked around her spleen, and was probably irritating her diaphragm. It can cause pain from her spleen area all the way into her left shoulder. It was positional as well, and she was unable to lay on her side. She was eating well, and wanted to start going for walks down the hallway. Once we started going for walks and having her sit in a chair instead of the bed, her pain decreased some. However in the evening and overnight she had a few times of sharp pain in her abdomen and chest, which seemed like muscular spasms. It happened quickly, scared the crap out of her, and then would go away quickly. She said the only areas hurting her today are the two incision sites, the other pain has gone away. We made it home this afternoon, and we are so excited for our own beds. However she is afraid to sleep in her room alone. She's afraid she'll have those pains overnight and no one will be with her to help her. So I'm going to stay with her tonight again. Poor girl!
We saw our surgeon today. They called us and asked us to come early because he was heading to a transplant after he saw us. I honestly don't know how to categorize the news we got, and I haven't quite figured out my feelings about it all yet. Her images were good, and things looked pretty good from the imaging. She had good pressures in her portal vein, good veins and flow inside her liver, and her labs were pretty good. The concerns were that she still doesn't have a large portal vein that took over, and her body created another shunt (area that carries blood in the wrong direction). She has a shunt that is running back toward her spleen and toward her heart. So her pressures look good because not all of the blood that should be going to her liver is going to her liver, it's escaping to other areas. This backup of blood is causing her spleen to enlarge (which it has been larger for a while), and her platelet count to continually decrease. It is the lowest it's ever been at 66. The consensus is that she needs another surgery, but the question is when. In our surgeon's words, "we are in uncharted territory". He's done this second surgery a few times for Abernethy patients, but all patients react differently, and the timing of when it needs to occur is different for each patient. I worry about when the right time is....I hate pushing things to the limit. I don't like to watch things slowly get worse instead of better. However, I don't want to push her into surgery. Miracles happen, and she herself is an amazing miracle. Macy knows how to surprise us, so let's pray for a miracle!
We will be followed with labs, and will return to Chicago in June for a CT scan for another check on her liver. Until then we are watching her closely, especially with the low platelet count. We are watching for any abnormal bleeding and her energy levels. Prayers are appreciated as we head into another round of the unknown. Thanks again for always checking in on us!
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