We got up early on Friday morning to head to the hospital. We went first for labs. They checked her INR, ammonia, and did a CBC. After labs, we went straight to ultrasound, and then on to our appointment with Dr. Superina. We waited for over an hour to see him, and were there for a total of 2 hours. So....we have good news and not so good news. I will not call it bad news, because it is what it is. I just can't let myself see things as a negative, I choose to see them as a stepping stone toward something good.
So good news first....Macy has blood flow to her liver. This we knew already after surgery, but it is clearly visible on an ultrasound now, and it is decent flow. He reminded us though that her portal vein was thread-like, and still may not be normal. It takes time for the vein to grow in size to accommodate the amount of "normal" flow. Due to that, he does not want to take her off of the Coumdain, and wants her to remain on it for at least 3 more months. Our poor, sweet girl had tears welling in her eyes. She quickly calmed herself. I asked her after we left the room about how she feels about the news. She said "well, I almost started crying. Then I told myself that my health is more important than activities." Her response almost made me cry.
We will return for another visit in 3 months. At that time we will repeat labs, have a CT scan, and see him again. We will see what things look like at that point. So until then we will remain on the Coumadin, with limited activities, and frequent lab draws.
Now the more not so good news. Macy might, again MIGHT, need another surgery. I am praying this does not happen. It was not in the plans, and I like to stick to the plans! So in short, sometimes the portal vein never grows to the adequate size, yet the portal veins inside the liver do, therefore an intervention needs to happen. This intervention is called the Rex Shunt. He would take a vein, most likely her jugular vein and place it to shunt the blood to her liver since its size is comparable to the normal portal vein. Why didn't he just do that in the first place? Well, the portal veins inside her liver were tiny too because the liver never had blood flow before. It would be a big surgery again, but she would only be asleep for the surgery, in ICU for 1-2 days, and on the peds floor for 5-6 days. Again, we are praying this never has to take place.
They are currently watching her ammonia levels closely. They were very high (up to 140) prior to surgery, and was 39 when we left the hospital. Last two results were 54 and 60, but those were both taken when she was sick and on antibiotics. That could be the cause, but regardless we are checking them again with her INR labs in 2 weeks. We are waiting to hear back about what to do about the 2 teeth extractions she needs in order to make room in her mouth for her braces, and how they feel about us going to Universal Studios next month.
So all in all, nothing awful, but I feel as if we are still status quo....just floating along. I really felt like we'd walk in there and he would say, "things look awesome, let's take her off the Coumadin, see you back in 6 months". Not the case....but shoot for the gold right folks!?!?!? Mixed emotions, that's for sure. Please pray for 2 main things for us right now. We need prayers for no events for Macy while we remain on the Coumadin. We also need prayers for some weight gain. She is growing in height, but her weight is not changing. Many of our specialists feels that height is the body's focus, and that weight will come. I want some weight now though to help when we get those cruddy winter illnesses.
We didn't let a little not so good news get us down. After our appointment we headed to Millenium Park. It was so cute! The girls couldn't believe the playground areas. We walked along the river, and headed to The Cheesecake Factory for dinner, topped off the family game night. Today we packed up, and left Chicago for what Jeremy likes to call God's Country....West Lafayette. We took the girls to their first Purdue football game. They loved it! Saturday night was spent in a hotel, swimming and playing Skip Bo. The girls and I have 1 more week of fall break, and we can't wait for a day at home in our pajamas, and celebrating Jeremy's 37th birthday!
I am going to leave you with this very dear public service announcement....please get your flu shot! It helps protect kiddos like Macy, and can make a big difference in her overall health this winter. We thank you in advance!
