Tatum update: we are still in the hospital, but I am ok with that if it is helping her to get better and more stable. Tuesday night was a little scary and so I am happy to stay here until her system is running a little smoother. We sent out a plea to all of you to help pray for Tatum to poop and guess what? She has pooped several times now. You are all amazing. I know that she has angels working round the clock for her but I also know that we have to do our part by praying and asking and doing our part.
It is a real struggle for me to make sure That I am advocating for her and what will be best for her and not me. When Trevin died we were just starting to come to terms with the fact that he needed a permanent feeding tube and IV access. This is why I pushed hard from the very beginning to get Tatum a feeding tube right away while she was still somewhat strong. I didnt want her to suffer with some of the things that Trevin did. I thought about IV access but I just wasn't as sure about it. My doctor brought it up yesterday and today. I felt like that was the sign I was waiting for. I really respect my doctor and his opinion. I hadnt ever really talked to him about it before So I called up to my best friend at Primary children's to see if we could do the pic line while we were doing the g tube change, thus one sedation. They were super efficient about it and got it on the schedule. Tonight when our doctor came he said well we just need to get to Wednesday. I told him that then I could feel settled and like we had done everything we could to make her comfortable and then we would just go from there. He nodded and agreed. He has a real soft spot for these special kids and has been so good to us. I just can't ever repay him.
Yesterday was such a calm quiet day for Tates today was not. The poor girl seized literally all day. She has been awake since about 7 this morning and has not gone to sleep yet. It is almost 10:30. I can tell she feels like junk. Not a smile to be found today. My heart brakes to see her like this. I hope that tomorrow she feels a little better and these relentless seizures will go to you know where!
On a lighter note: so there are a lot of younger nurses that are working pediatrics. A few of them have come in to check on Tatum and commented on how she is bouncing to the music or moving her head. Well news flash Tatum can't move a muscle voluntarily. They are seizures. I almost said something but I knew they would feel bad and it was funnier to just let them think that she was rocking to the music:). Ok I might be getting a little stir crazy if I find humor in such things, but it's survival mode people!
Here is hoping we get to go home tomorrow. I miss the kids. Poor Heidi keeps texting me when are you coming home. Lance asked me tonight "what do you put in the kids lunches?". I totally forgot that they needed those things done. I gave poor Lance no instructions. Then last night when he was driving home from the hospital at 10:00 pm he got a flat tire on the way home. He said he didn't get home until midnight! Poor guy. Luckily his work has been fantastic.
I am so grateful for the outpouring of love and concern for us. It is overwhelming all that people have done for us. I am grateful for prayer. I am grateful for Lance who has picked up and carried the load at home so I can concentrate on my sweet Tater bug. I am forever grateful for my five other miracles at home. I can't believe how lucky we are to have them in our family. Each one so unique and amazing. I am grateful to still have a calling in the church. I hope that I am not a detriment to the beautiful young women that I get to serve or the wonderful women that I get to serve with. I feel like my load is definitely being carried by others. I am thankful that the Lord has seen fit to allow me to continue to feel needed in that capacity.
When I get home tomorrow I will post some photos of our adventure at hotel IHC