Late Post

Didn't quite get to posting after our appointment last Thursday. We left for the Birdsall Family Reunion in the UP Monday morning. Back now and had a great time. I'll try to post some photos later.

Thursday we saw the G-tube surgeon, pulmonary and had another ox-swallow. Lots of good news.... Owen gets off the apnea monitor mid-July!!!! We get to start 1 oz of formula thickened with rice cereal 2 times a day. He can also start trying stage 2 baby foods (stage 1 would be too thin). We are excited about this. Held off until after our trip however. The baby food will be interesting. It is pretty messy. With each swallow it pushes up and out his nose. Doesn't feel too good and looks even better ;p. We'll have to clean out his nose afterwards. Sounds like no fun for Owen. We'll let you no how it goes. Good thing was he didn't gag at the texture, which can be common with SB.

The G-tube surgeon said his site looked great and we will probably need to replace his button in a month or so since he is growing and getting fatter.

Then... on July 3rd, while on vacation.... I was feeding him and talking with relatives when he got increasingly fussy towards the end of his feeding. Then I noticed the formula hadn't gone down in a while. Stopped the feed and looked at his button. It seemed higher off his belly than normal. I remembered that I had learned last Thursday from the surgeon that this is a sign that the button could be pulling out of the stomach. The thing that instantly concerned me was that if it's not going into the stomach it could be leaking into his peritenial cavity (where his shunt is!!) "Kiss of death for a shunt" were the surgeon's words ringing in my ears. Had Eric look at it and he agreed it looked higher than normal on his skin. A huge comfort and help was that two of Connie's cousins are nurses. So they took a look too while I called the surgeon on call.

Long story short.... we determined it must have gone back in because we could turn it and flush it. Feeds have gone in fine since, but it still looks high to me. So we are headed to Riley today (so much for my month off) just to check things out. I don't want to mess around because of the shunt. If it is going to have the tendency to do this again, I don't want to take any chances. We just want to be sure everything is ok.

So we'd appreciate your prayers today. That the G-tube nurse will be able to tell what may be going on and know if she needs to call the doctor in. Also, that if we try and keep this button for another month that we won't have a scare like this again. We really don't want another shunt revision surgery.

On a side note... This "mini-crisis" with the G-tube happened right after we had shared Owen's story with the family at the reunion. We had just shared how we were never really scared through this last year and a half. We were never scared that God would not take care of us. Never afraid that He was not in complete control, but that doesn't mean there are not moments when things get scary. Eric often describes it as the difference between riding a roller coaster and going over a cliff in a car. Both are scary, but when you're in the roller coaster you know the track is there beneath you to keep you on coarse and save you from collision with the ground below.

I think the hardest part for me in times like Tuesday night are knowing when it's for real. "Is it just me being paranoid or is this for real something we need to move on?" Hard questions. But I have learned to trust my instincts and rely on God to guide us through these kind of situations. As I ran back to the room to get the foley and the phone number for the surgeon I just gave the situation over to God. To work out all the details and to give us peace and presence of mind to make the right decisions for Owen. And He came through, like He does every time.