Wednesday, December 06, 2006

Miles eating issues...

It seems like more than ever, but I need wisdom from the Lord himself about what to do with Miles. He can't seem to keep any liquid down. He's not sick. It's just that his body is rejecting liquids. His food comes back up too, but not as bad unless we give him something to drink with his food. He looks pale. We're watching him for dehydration, but he seems fine for now. I just don't know what to do. We're trying so many things right now to get liquids down him but nothing seems to be working. I think he threw up at least 20 times yesterday. He doesn't really throw up, he doesn't spit up, his body just rejects it. He will be sitting calmly and all his food and drink will flow out of his mouth in huge amounts at a time.
His physical therapist came over today and she has been like me from the very beginning about the G-Button/Feeding Tube. (See yelling and throwing things post if you don't know what I'm talking about.) She didn't want that for Miles at all, but today she told me that she has changed her mind. She now thinks he needs it. She thinks he needs it for growth, strength and for erroding esophagas reasons. She told me that she did not want the Feeding Tube to replace food. She said that we will continue to feed him foods by mouth, but the button would be great for liquids and medicines. The great thing about giving him his medicines through the button is that he will get every drop. He won't spit it out and not get it all. That would help with seizures and surely his body tone. I'm not in any way saying that I'm on board with this decision. I'm just saying that there are benifits to this thing.
My back has been so tense the last week as watch his food come out of him over and over and over. I feel like everyday I'm getting backed up into a corner closer to him getting that Feeding Tube. I'm trying so many things to try to figure out how he will keep food down, but so far I've just spent a lot of money without any good results.
I've determined in my heart that I'm going to hold off talking to the doctor until December 27th. I have an appointment with Miles' pediatrican to discuss all the things that are going on with Miles. Dr. Wiley called me out of the blue about a week ago and said that he wanted to make a time to sit down with me for an unlimited time and hear my heart about what to do with Miles. Can you believe that? Dr. Wiley is so awesome! He wants us to sit down and make a plan for what to do with Miles. With this in mind I want to just do what I can until that appointment to try to fix this rejecting food problem, but if he still is having trouble by the 27th I'm thinking that we will be discussing the Feeding Tube on the 27th.
So as I said at the beginning of this...I need the Lord's wisdom about what to do. He's the only one that I have confidence in.

I will say this though...My lovely friend Rachel sent me flowers today and it made me happy. They weren't roses. They weren't daisies. They were scrapbook flowers! How sweet is that? The Lord gave me great friends!

6 comments:

Tangerine Tinselbreeze said...

Hey Sister,

I think I have been hesitant to talk to you about any of the Miles issues because I have medical opinions and nursing perspective and have seen many children in various situations that have been very difficult. One of the reasons I stopped working in pediatric intensive care after six years was because of how painful it was.
I have known you for a long time.Although I have never been very close. I always thought so highly of you- even more now. I do have a lot of thoughts on these things, but I am with you in your desire to hear the Lord on your decisions for Miles. So for this reason I have not said anything. I do want you to know that if you are scared or confused or just want someone else "medically" inclined that promises not to shove the "medical" perspective down your throat, please call- it would be my honor to be another friend to you. Praying without ceasing for all of your needs.

High in Demand said...

You have no idea what a blessing that would be to me! I love to talk to you about these things. Expect a call soon! Why haven't I thought of this before?

A little bling, bling please said...

I was so extremely blessed by all the tables! How great is it to have women that will participate and do it with all of their heart! It was so funny...Joel and I were looking at all the tables and he asked me who did your table and I told him and he said "oh, they are hired!!" I do hope you get something just perfect with that prize money! You deserve it!

A little bling, bling please said...

Man...I posted this under the wrong one...I'm so sorry....it goes with your victory story on the table...oops.

Carolyn said...

Just a thought...my nephew was born 2 months premature and had some "issues". One of them was Pyloric Stenosis (not sure about the spelling). He could not keep ANYTHING down! The drs did a surgery to tie a knot at some point in the line leading to his stomach-not really sure, but you could ask about it. He is 10 now and just recently had to have another surgery because his feflux turned into him throwing everything up again. They went in to do almost the same thing they did for him when he was a baby. Because Caleb had been throwing up so much, they found his stomach was in his chest!, he had a hernia, and then they fixed the problem. He had to start over only eating baby food and then progressing..at thanksgiving he could only eat tiny bites and had to chew really well, he also couldn't eat things like grapes or tomatoes because the lining could get stuck going down.......all this to really say, ask about P.S.-your drs are pretty thorough though, so you may have already.
Also praying without ceasing-tis the season for a miracle!!!

Carolyn said...

I just found my pastor's blog- he has a great one called "Why Did This Happen?" his site is kutightlines.blogspot.com
Thought you could use some encouraging words from a truly Godly man....