First of all we want to thank everyone for all of the prayers during our recent visit to Chicago. We've had 2 venograms before. The first was in 2008 to make her Abernethy Malformation diagnosis. At this one, they told us that her portal vein was absent. They also proceeded to tell us that she would need a transplant, and that she would need one sooner rather than later. I knew deep down, that The Lord had different plans for Macy. From 2008 until 2015, I searched for answers. Along the way, I met a mother who started a blog to find answers for her daughter, also diagnosed with Abernethy Malformation. She found an answer...his name was Riccardo Superina. I talked with her multiple times about the repair he had performed on her daughter. I knew that when the time came, he was my man!
In 2015, multiple specialists caring for Macy expressed concern for her health. We all collectively decided it was time to do something. Our amazing GI doctor at Riley sent us to see Dr. Superina in Chicago. We first made contact in 2015, and planned for another venogram in April of 2016. At this venogram, they made the amazing discovery that Macy did have a portal vein. This was one of the most amazing blessings that Jeremy and I have ever received in regards to Macy's health! We rejoiced and cried at the same time! Her portal vein was the size of a thread, and was carrying no blood to the liver. The blood was going around her liver through another area (a shunt) that was not supposed to be there.
The decision was made in 2016 to perform a surgery to repair her liver. In a matter of 18 days, Macy had 2 surgeries, was completely paralyzed for 5 days, and spent weeks in the ICU. We then spent months recovering, as well as 9 months on a therapeutic dose of Coumadin (blood thinners). During those 9 months, Macy had to have weekly, bi-weekly, and monthly labs draws. We finally came off of the Coumadin in January 2017, and had another CT Scan.
Unfortunately the CT showed an enlarged spleen and many small veins running to her liver rather than 1 large vein (portal vein). This means that not enough blood is getting to her liver, and is backing up into her spleen. This was causing her platelet count to drop as well. Basically, Macy was in portal hypertension. The only fix is another surgery called the Rex Shunt.
This brings us to our most recent venogram. This venogram was to check the veins running to the liver, and check the pressures in the portal vein area. During surgery, when they went in through her neck, they were able to get some information, but not all the information needed for our doctor. Therefore, they had to unexpectedly go in through her stomach and poke into her liver. This causes an increased risk for internal bleeding. The worst part is, they still didn't get all the info they needed. They had to watch Macy closer and longer than the original plan and check her hemoglobin levels multiple times before they could send us home. We finally went "home" to the Ronald McDonald House. She was actually doing way better than any previous venograms. We were able to attend a party on the 4th floor at the house to celebrate the 5th year anniversary of Ronald McDonald House location that we stay at. Ronald McDonald was there, and they did face painting. If Macy was feeling any pain, it definitely took her mind off of it. So we left Chicago with no answers, and we had to wait for the phone call.
Waiting 2 weeks to find out the plan is very difficult! I have to admit that I broke down and called twice, once last week and once this week. Those that know me well, know that I live and breath Macy's medical life. It consumes me......and it has for 11 years. Things gets easier sometimes, and other times they get more challenging. The last year has been a challenging one.
The news we received today is nothing short of a miracle. As I said previously, Macy has been in portal hypertension, with blood backing up into her liver.....basically in need of another surgery. The venogram was to basically confirm not IF, but WHEN the surgery would happen. We knew we were going downhill. WELL, the venogram showed blood flowing to the liver, and flowing with the correct pressures. A normal pressure is 1 to 5, and Macy's is 3. She is no longer in portal hypertension! Macy's ammonia levels and her platelet count is in normal range! Our surgeon's office told us "she appears to be turning a corner". We do labs in 3 months to make sure we are still heading in the right direction, and will return for a visit (for labs and an MRI) in 6 months! This is the most fabulous news ever! We are so thankful for this break for our family, particularly for Macy! She is so happy to continue her normal summer being a carefree kid!
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