Good News at the GI clinic!

Good news at the doctor's office today. I took Esias in because he was getting some granulation tissue around his stoma (the hole in his stomach where the tube goes in). This is kind of normal but can be bothersome to the kids and make it leak and bleed. So they saw him today. When we were talking in the beginning of the visit, the doc and i were talking about how much weight he's gained. He was 29 lbs today! TWENTY NINE. That was fully clothed and with a cloth diaper on, but STILL. He has gained 10 lbs since being tube fed (Nov.). And 15 lbs since we brought him home. He has more than doubled his coming-home weight! I think she said it was 75% for weight! And 90% for height! Wowzers! So I asked her, how much longer will we need this tube? We've been cleared for liquids, though he can't chew correctly, he can still eat almost everything except hard foods. He can now eat small pieces of meat and other foods as long as they are cut small. So she said we could wait til his two-year appt. and if the doctor approves, we can discontinue overnight feeds - if he doesn't lose weight and continues to grow, he can have the tube removed in four months! YAY! So in September, he might be done with this! Woo hoo!!!!!!!!!!

Today she used silver nitrate to remove the granulation tissue and I, yes, I removed the old Mic-Key and placed a new one, while the docs were there to assist me and hold him down. He did AMAZING. Hardly cried and was so brave. I was so proud of him!! The site looks much better now. Pray for no more granulation tissue for E-man!

M-I-C K-E-Y Tube is in his Tummy!

Here's E-man's brand new tube! It's suppose to be "low profile" but it sticks out a bit. What I like about it is that we can take off the long tail of tubing and only hook it on when we need to feed him. That makes it less likely to get caught on something and less noticeable to the general public. Not a big deal, but it helps. This one is good for longer term use which is nice. Every four months, Dan and I will change this ourselves at home. Yep that's right. We're quite talented :) There is a little balloon of water that holds it in place inside his tummy, so we just empty the water, pull out the tube, insert the new one, and fill it with water. Sounds easy enough...ask me in four months when I am gagging while poking this thing in his poor abdomen! We get another swallow study in June and we'll see then how long we'll have to feed him through this.

Anyhoo, the surgery went great. We were there at 6:45am and home by 11:30am! Nice. That's the best hospital trip we've ever had!

New Tube

Esias gets his new tube tomorrow early early in the morning. It is the low profile tube called the Mic-Key. Read about it here.

I am nervous about changing because now we are so used to the Peg tube. Dan assures me that they would not recommend this new tube if it weren't better, so it's worth it. The Peg tube does stick out and get caught on things occasionally and tears his stoma in the process. But this new one actually can pull out of the stomach, which scares me a little! It is held secure in the stomach by a little balloon of water. We will be taught how to change the tube and change the water in the balloon. Oh new things for mom and dad to learn.

Baby Boy is sleeping peacefully now, he has been one crazy sleeping baby lately! Two nights ago, he slept from 6:15pm (after Eden's art reception) til 6am. Then last night he slept from 6:30pm til 7am. He's is one tired dude. Who apparently is awake now...I can hear him squawking in his bed. The girls' howling like dogs downstairs had nothing to do with it I'm sure :)

So if you think of it, pray for Esias and us tomorrow at 8am- he has to be put under...again...I think this makes 5 times in 9 months!

Good News at the Otolaryngologist!

Esias had his follow-up oto. appt. this past week and the great news is that he does not need to be seen in clinic anymore for his laryngomalacia! His breathing is great and everything seems normal. The feeding tube has done its job for sure. We will continue to go see Radiology and Speech Pathology for swallow studies and also Gastroenterology for his tube and reflux. I am just glad we have one less appointment and mostly that his breathing is awesome!

Oh, Bubber Dudes.

Zias in the hospital, Day two of his feeding tube.

I intended to write a post on non-feeding-tube things today, but I can't get this off my mind. Esias is just as sad as sad can be about not getting to eat through his mouth! Tonight, he conned me into picking him up only so he could reach behind me and grab two chocolate chip cookies and stuff them into his mouth before we knew what hat hit us. Poor little dude was pretty angry when we took those yummies away. So far, he is getting all his liquids in the tube and we've given him small amounts of purees to keep him interested in oral feedings. This is proving to be one of the toughest things I have had to deal with with my kids. It's just an instinct to want to feed your child. His little sad eyes pierce my heart! I know exactly what he's saying to me! He's so confused and mad. I found the pacifier today and he sucked it like he's never sucked before. I am going to call the doctor tomorrow and see if we can adjust the caloric intake. Perhaps he's just not satisfied? I don't know. I'm grasping at straws here. It's really hard for my logical side (don't laugh dad!) to convince my emotional side that we're doing the right thing here!