Saturday, July 25, 2009

Levels & Water

Our levels are almost normal. I was hoping for normal but they are down a little bit again. We got in a little bit of trouble for drinking water. I have been trying out different foods and gradually increasing what he eats. The moment he shows difficulty I say all done and remove the food. This morning the nurse came in and said that the doctor ordered nothing by mouth until we could get another swallow study done. I said, "I need to speak with someone, because he has at least been cleared for ice cream and things of that nature." So the doctors came down and talk to me. They stressed that the risk of getting any food or water in his lung is not worth the result. They highly recommend no thin liquids, and only soft mash potato foods. I kinda felt like I was getting busted for getting a little over enthusiastic about the return of his swallowing capabilities. They are so right. I know Gary though. I know what he can and cannot do. Then again, my caution has detriorated. I am just so ready for him to be normal again and get the dang NG tube out. I think it will be awhile until that happens. The goods news is his levels were down enough to lower his steriod by 6mgs. Next week when we come in for our LAST weekly Cytoxin infusion, we will have bedside evalutation done and another swallow study done. In the mean time they told me to back off with the food and water. I may think it is time, but they don't. Unfortunately they can back themselves up because during our clinic visit yesterday Gary handed me my bottle of water and asked for a drink. I was so focused on what the doctors were saying I gave him a little sip without thinking. They were a little shocked. Of course he sputtered and coughed on it. He doesn't always do that! Uggghhhhh. Darn it. "Nothing like a little water in the lung," says the doctor. He he he?? I wanted to hide. I frantically tried to explain that I didn't mean to give him the water, but we have been trying at home and he was doing ok with it. Bad timing I say. BUT a big BUT, I will not jeopordize Gary's recovery and go back to obeying the rules. Rule number one, do not put our child in ICU by pouring water into his lungs.


  1. UGH! So frustrating. You know, I would have done the SAME thing with the water....Here you are talking with someone, Gary asks for a drink, of course you are going to give your baby boy a drink. He's thursty. I so can see that situation and how you must have felt....I also get how much you want him to just be his normal self, eating normally, drinking normally, playing and running, being "Gary". Thank goodness for all of the research on this disease. I pray we find a cure soon!I know you are doing a great job!It is easy to be impatient too. How can you NOT want that for Gary. So what are you supposed to do with it being so hot so he doesn't get dehidrated? SP?I love you so much Erika.

  2. Erika, I am Mikey Galvin's mother..I wanted to thank you for your post on Mikey's website and the link on your page. It means so much to me. I will be keeping Gary in my thoughts and prayers.

  3. We are so glad that Gary is improving so much! I know that you are doing what you know is best for Gary and like I said before we are there only advocates who know their every change! I got in trouble also so don't feel bad. I let Kya jump on the trampoline by herself with me there by her side. I thought it would be good exercise and she was begging! I guess we won't be doing that again. I got lectured by Dr. P and our Dr. in OKC about how wrong that was. I just want her to be able to do what she wants without feeling like she is handicapped or being held back. I don't her to pur limits on herself as to what she can do, but I also don't want her to get hurt in any way! What a balancing act.

    Kya has learned to pray adamantly for Gary! She said his name at least 7 times in her prayer Sunday night. It was so cute that Lake and I got tickled! But, she really wants him to get better too!

    We are praying for you guys! I still want to get a Mama Tiger T-shirt designed! Your family is in our prayers!