Today has been a very bad day for me. We got to the Methodist hospital around 7:30 and were headed to Texas Children's by 9 for our clinic appointment. The main discussion revolved around pain management. It was difficult to decide which medication was best for Katie and what to do. I don't like seeing her in pain and I don't like seeing her a zombie but there doesn't seem to be a middle ground. Never really thought I would have to decide which narcotic was best for my child. William is ready to give up on morphine and just give her Tylenol for the pain. It was difficult to text him (didn't want to discuss it in front of Katie so that is the best way..) and get him to understand what was going on. I was very tired by the time we left at 5! They put her on TPN (IV nutrition) to prevent dehydration and hopefully make her feel better. The home health company couldn't get the TPN to me today so we stayed for TWO hours to get 100 cc of fluid in her to hold her off till tomorrow. The good side today is that Katie has eaten more and she is trying to get to the potty in time to have her diarrhea. She even laid in bed and watched Ice Age and was laughing today. However, Katie did get awful mad when I wanted to read a book with a 15 watt bulb on when she wanted to sleep. (I need to invest in a good book light). I became very frustrated with her and yelled...I should not have but I am past the point of breaking....The other good news is that they will probably radiate her left knee and possibly her left fibula. They are beginning to think her pain is coming from the cancer in that area and not from compression of the nerve to the left leg. On Thursday they are going to remove the Foley while she is sedated and then we are going to spend the day in clinic trying to get her to urinate and also get platelets (her platelet count was low today). If she can urinate on her own then the Foley will stay out...if she can't then it will be put back in for a little longer.
Pray for today: Katie to be able to urinate easily on Thursday and peace for my mind....I no longer have patience with any thing or any one.
Oh, that poor baby! My heart goes out to the both of you and your hubby.
ReplyDeleteWouldn't it be better just to let her stay in the hospital and quit moving her around? She must be in awful pain and I don't think Tylenol will do it.
I am so sorry that she is suffering like she is and feel terribly bad for you because you are down here in Houston by yourself and have to make decisions. It has to be very hard for you to see her suffer and I know that your nerves are at the breaking point. Its too bad that there is no one that could come and sit with you and pray with you.
Christa, I know you are doing everything you can and what you know is best for Katie.
ReplyDeleteCharles' mom once passed some advice on to me that helped immensely with making decisions
"You can only make the best decision you can with the information you have available at the time." This helps both with decision paralysis - when we're not sure what the best road is for Connnor and with regrets - "if only I'd known" doesn't help him anyway.
It's so hard to make these tough choices for our kids b/c we want to be infallible for their sake. But in reality you do what you can with the choices and information you have at the time, and the rest is up to God. That's the most anyone can ask of you, and you're doing a great job.
It kills me after all the amazing things you did for Connor that there isn't much I can do for you and Katie besides pray. But please know I am praying for y'all every single day. I know you have a lot of family and friends praying for you, and I pray you feel that every day.
With much love, Carolyn
Christa,
ReplyDeleteKeep your head up we have to make hard choice for our children everyday when they are really sick. Somedays are easier than others. Try to take sometime for yourself when you can even if it 5 min walking outside to clear your head. I know it is hard but sometimes you have to do it to stay mentaly heathy. Just know when you cant find the words to pray God is still there and will bring you and your family throw the hard times. Even when you cant find the words your faith is still there and he knows what you need. If you ever need anything you just let me know and know that you and your family are always in our prayers.
We love you and may God Keep you in his arms and confort you during all the hard times.
Lauree and Little B Hamm
CC: Please don't be hard on yourself. You are doing the best you can. I think you are a super human anyway to ahve so sweetly gone through what you have this past year. Remember that last part. I know you are super, but you are human and we humans get tired, frustrated, discouraged.....You are a wonderful Mom, a strong Christian and a friend. We love you. Try to take one day at a time and, like Charles' mom said, go with what you have. With your medical degree, you are able to make more informed decisions than the rest of us. We love you and are praying for you. Lorraine
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