Complete update

After a very long day yesterday Megan received her GJ-tube. You know Megan has been on a feeding tube since she was 5 weeks old so you would think that you would get used to this but each new tube is a new experience. This one is bulkier and longer than her G-tube that she used to have. This one actually has 3 ports. One is for her balloon, one is for her feeds and the other is for her medicinces. So, yesterday afternoon I spent some time trying to get used to this one. It is a little more complex and it is going to be a tad bit harder when we have to give her meds only because you have to undress her, hook up another extention and put her meds through. At any rate, if it makes her more comfortable then what ever it takes.

Megan did pretty well yesterday considering everything she had to go through. Once again, we found ourselves in the hospital watching them take Megan out of our hands. When they came to get her she obviously started crying. We heard her wailing down the hallway as they walked away. Once again we fought back tears and we both just looked at each other wondering what to do next. Jim said, you know you would think this would get easier but...and I said, yeah I know it just gets harder. Jim and I had been trying to avoid the getting the GJ-tube for a while now but we both now know it was the right decision to make. Praise God! He gave us peace just when we needed it. Yesterday when they brought Megan back to us, she said that Megan had so much acid in her tummy that it was actually eating around where her tube is on the outside. She said that hopefully with the food going into the small bowel that she will not have as much reflux. We are praying that is the case because knowing your child has been in that much pain is not something you want to hear. Of course, she just plugs right along with a sweet smile on her face. We did realize that since this new tube is bypassing the stomach that her feeds cannot go in nearly as fast as they were before. And they weren't going in that fast to begin with. She slept when we got home yesterday afternoon and then woke up screaming in pain. All she was doing was pulling at her belly. It didn't take long to realize her food was going in to fast. Thankfully she slept all night with a little crying here and there but when I went into check on her, I rubbed her back and she went right back to sleep. So I think we will have to work with her formula and pray that this gives her some much needed relief. When we were in the hospital last year they told us that Megan does not feel hunger. She would be just happy not having to eat at all. One is because neurologically she just doesn't and two because eating for her is so painful. When she was first born until she was 5 weeks old, she aspirated on her food and threw it up. Once she got her tube at 5 weeks and no longer took anything by mouth, she just threw up the food and she had severe reflux. So I guess with all that I wouldn't want to eat either. That is just heartbreaking that she has had to deal with all that.

We are praying for a relaxing weekend, with a trip to the pumpkin patch Sunday after church if she is feeling up to it. The boys have been asking to go get one for a couple of weeks now. Hopefully Megan will feel like it. She woke up very early this morning and has been fine one minute, then crying the next and just wanting to be held. I don't mind holding her though. :) Her tube site is really red and yucky looking so I imagine that is what is bothering her. Jim said this morning that he thinks she is even cuter today! I didn't know that was possible but he is right, I looked over at her and sure enough, she really is even cuter today! Pray for a restful day today and that she will start feeling more comfortable soon. And hopefully Jim and I will get used to the new tube. Thank you for praying for Megan and our family. God Bless you guys and have a great weekend!


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JR