We got the call on Friday afternoon that stated they wanted us in Chicago by Monday for testing and possibly surgery. We felt all of the feels because we were worried about the urgency of appointments. Yet, we couldn't say no and try to push it back to be more prepared. We've had too many emergent situations with Macy that we don't ever want to be in that position again. So after calling Jeremy and making sure that we could make it happen we told them we'd be there. He booked the hotel and called his parents to see if they could help with McKenna. I spoke with medical imaging and surgery, and put all of the plans into place. We were told on Friday night at 5:30 p.m. that Macy would need a Covid test and that someone would call us over the weekend to tell us where to go. I worked all night Friday night writing lesson plans, and went into work on Saturday to get my classroom ready to be out, possibly through Wednesday. In the meantime, McKenna woke up with a low-grade fever on Saturday and we couldn't very well take Macy to Chicago to have procedures and leave McKenna behind if she was sick. So we squeezed a doctor's appt. in on Saturday too. While there, they tested McKenna for Covid and the flu, and they were kind enough to do Macy's Covid test for us. Sunday we got the house ready, packed, and headed to Chicago late afternoon. No one from a Covid hotline ever called (more to come on that soon).
We had orders to arrive for her MRA on Monday at 8 a.m. The girl who scheduled it tried to tell me that Macy could eat beforehand. I knew better. This isn't our first rodeo. Since it's an abdominal MR, she cannot eat, like when she has an abdominal ultrasound. Only 1 parent could attend, so Jeremy stayed at our hotel to work remotely. Our nurse seemed new and unsure of MANY things, and it made me uneasy. She was asking me if Macy had ever had this specific contrast during an MR, and explained that it was a special kind. She said it was slowly administered over a 15 minute period and that she had to be monitored closely due to the chance of hypertension. She said that a cardiologist would be on standby. I immediately asked her if everyone was aware that she was a cardiac patient. She said yes, however she was kind of a mess and made me feel unsure. Finally once we got back to the MR room, I made the tech check her previous MRs to see if she had that specific contrast before and sure enough she had. Good grief! Maybe that nurse needs to not tell so much information to the patients. It takes a lot to make me nervous, and she did a great job at doing that.
Macy was a champ during her MR. The first half was without contrast, and then the 2nd half was with contrast. It took about 1 1/2 - 2 hours. It was a long study. During the MR, when they were getting ready to start the contrast, a doctor from Interventional Radiology came in and wanted to know if Macy had a Covid test before her scheduled surgery on Tuesday. I explained that I gave the results to our nurse and she uploaded it into the system, and explained that no one ever called us either. She took the test documentation to Infection Disease and they said they couldn't accept it. I was thoroughly annoyed, especially since no one called us! So following the MR, they made Macy do another test, and this time tested her for a full list of respiratory viruses. They then pushed her Tuesday surgery back because they needed to make sure results were back. I didn't know how far back they pushed it, but she acted like it was just pushed back a little.
Following the MR, I grabbed Macy some soup and chips from a local restaurant (she was starving), and we headed back to the hotel. We all worked for a couple of hours, getting work and school completed for the day. Around 2 pm, a nurse called me about the surgery on Tuesday. At this point, we still hadn't heard any MR results, and I had put in 2 phone calls to the doctor's office. I feel bad for the poor girl who called to tell me the info about the surgery on Tuesday. She was just trying to give the times and info on not eating, etc. I kind of gave her a piece of my mind when she told me that surgery had been pushed back to 2 pm. All because no one called us from the "Covid hotline" to tell me the specific place to go for the specific test.
Long story short, we were forced to book another night at the hotel because we went to bed last night still not knowing if Macy was having surgery or not. We didn't know if she could get up and eat or not. We couldn't mentally prepare for knowing if our daughter was facing surgery the next day, her 34th surgery to be exact. Worst of all, Macy couldn't prepare. I laid there last night, and closed my eyes with faith that everything was going to be okay. She looks healthy, she is gaining weight better than ever, and all her bloodwork except her platelet count has been normal.
Luckily the doctor's office redeemed themselves when they called first thing this morning! It helped a little that they had great news! Macy's MR looked great! As a matter of fact her words were "her MR has never looked better"! She canceled the surgery! Another crazy things is that her platelet count went back up! It's not normal yet, but higher than in January and December. She said that they will look over Macy case next week at their Radiology conference, and decide what our next appointment will look like. Our NP chatted about how concerned she was given the lower numbers and Macy's previous history, and this must have just been a fluke. Macy is a pioneer in this specific area. She is only 1 of 3 that have ever been changed from an Abernethy patient to a Rex Shunt patient. She is also the only 1 that had this surgery who had only 1 side of her liver developed. With that said, no one likes to take changes with Macy. We are okay with that!
For those of you trying to remember exactly what there were looking for, here's a little background. In April of 2019, they took a vein from Macy neck and placed it in as a portal vein in her liver. In a normal body the portal vein carries 25% of your cardiac output to your liver. Macy was originally getting 0% to her liver. When they looked at it yesterday, it is carrying 25%. Just like you and me!!! It truly is unbelievable!
After we got the okay to leave, we headed to a donut shop to grab a gluten free donut for Macy, since she could eat. Then, we packed up and headed home. We were so excited that we made it home in time for Jeremy to go pick McKenna and her carpool buddies up from school. She was so excited to see us all!!! I felt like crying when I saw her. I hate leaving her.
I have to give a huge shout out to my in-laws! They jumped in to help, no questions asked. Papaw Mark should receive a special award for his part! They are doing some renovating at their house, and Mamaw needed to keep those workers in line. So Papaw spent both nights at our house playing the role of Papaw Mom. According to McKenna, he did a fabulous job! We are so thankful for them!
In other news, both girls were negative for Covid and the flu. Macy also tested negative for multiple other respiratory illnesses, but tested positive for the common cold. We wouldn't of known though, since she's been fine. Weird.
Anyway, thanks again for following Macy and her journey. We are so blessed for so many people who step in to help in so many ways. All of the prayers are working, and Macy is living proof of that. This girl is truly a walking miracle!
I'll leave you with the only 3 pics I took while we were in Chicago.
