Tatum Update: Tatum had a great night. Her sats were 98 all night! Woo hoo. She slept all night! Double Woo hoo. When she woke up her secretions seemed way decreased. She sounded much less gurgly (my own descriptive word, it paints a picture right?) The morning went well. Hilary only had a few small outbursts and 2 year old moments while getting ready. She did insist on wearing pants under her dress today. I think we have lived in Utah too long:) We made it to the doctor only 15 minutes late. I was feeling pretty good about that, after packing all of her "accessories" and Hilary and myself, i would say 15 minutes late is actually early. The visit was good. We talked mostly about medications and levels and how to mix things up a little when she has bad spells. We have a liver clinic at PCMC in two weeks. There we will find out how her liver is reacting to everything. Keep our fingers crossed that all is well. Then a few weeks after that we go to her G-tube follow up. Feedings are going great for her. I hate to type that outloud, in case she is listening. We don't want to give her any crazy ideas! Let's keep one thing good! Tatum has kept her sats good all day, and I only suctioned her twice today and we were able to move her oxygen down from 3/4 liter to 1/2 liter. Great strides today. We haven't even been monitoring her breathing because she sounds so great. Go Dotera. I will apply these oils every day if they will help her breathe like this. I wonder if she was having allergies or a cold and they have helped with those symptoms. Whatever it is we are grateful.
After the doctor we went to get some more portable oxygen and shop at the Home Health store. Don't be jealous. Then we went to a friends house to visit for a bit. We came home unloaded and did a few quick things at the house and then we were off again. I needed to go to Costco and IFA for some fertilizer for our sad lawn. I was going to wait until the kids came home, but i just wanted to be able to do it on our own like we used to. So we loaded up. Poor Hilary is scared to death to get in and out of the van now ever since she fell out of it a few weeks ago, so she is slower than tar (she used to be slower than mud, now she is slower than tar!) What else do I have to be doing, so I try to be patient. We were finally loaded and on our way. We ran a few quick places and then off to Costco. As I pulled in to the parking lot I got a little nervous. It never fails that it takes me an hour and a half to get through Costco because I always see a million people that I know, which I love. I love talking and visiting, it is in my very nature. I was just a little nervous today. There are plenty of people who I know that haven't heard what is going on with Tatum and I just wasn't sure if I could face them today. There must have been a total bubble around us today. I only saw one worker that I knew and we usually just wave and exchange hello's. So I didn't have to face any uncomfortable situations or anything today. It was a miracle. Yet another prayer answered. There have been so many.
Along the lines of prayers being answered. I am not sure if I have already shared this, so forgive me if I have. I want to make sure that I document as many prayers that have been answered so that I have this history to look back on when I am in the depths of my sorrow. So that I will remember the love that Heavenly Father has shown me and my family every step of the way through this difficult time. Probably two months before Tatum had her big seizure, I began having spiritual confirmations that she really did have what Trevin had and that her seizure event was coming. I had a pit in my stomach for most of those two months. Up until this time I had been praying fervently for her to be well and not affected. I didn't want to do this again, it scared me to think about her fate. About that two month prior mark I began praying for the circumstances of her event. Meaning I started laying out how I wished that it would happen so that we could handle it better. I prayed that it would be during the day so that I would be clear minded and aware of what was happening. That our kids would be in school so they would not have to witness the seizure. That we could have our doctors there with us. That they could get an IV and that she would not have to be intubated. The list went on and on. As you go down my check list, every one was answered. It was as if it were orchestrated from above. I am so grateful that I asked for the things that I needed and that I was specific. Such a testimony that our Heavenly Father hears us, knows us and would do anything to help us know that He is listening. The week before Tatum went in to the hospital the first time I had a dream that she was having a seizure and I was running around with her in my arms trying to show her to the doctors and yelling help trying to get them to help me. I woke up terrified. I went to the Temple that morning and had an amazing experience there. The dream was certainly a warning of things coming, but I was able to find such peace in the Temple amid the impending doom that I was feeling. A good reminder to me that there can still be peace inside of the storm, we are in charge of finding it, inviting it surrendering to it. Most days I do find it.
Today one of the things that the doctor said was that Tatum would slowly become less responsive to us. Less smiles, laughs, looking at us, she would become more sleepy. That really made my heart sad. I live for her smiles, and her sticking out her tongue and looking at each person who enters the room. I pray that he is wrong.