I haven't heard back from our GI doc which is why I have yet to update.
It took me until yesterday to call his office to follow up with Faith's G-Tube. I'm sure he'll call me within a few days.
We don't know what the best decision is. We have spent the last couple of weeks praying. Literally. And asking God for His wisdom to fill us and to trust Him.
We don't want the doctors to make this decision for us. And while we completely trust them, their advice and experience; situations are different for everyone. We want to be fully educated, have as many resources, other families experiences, and as much knowledge as possible.
Faith has been doing wonderful lately. Aside from a little cold she has right now, she is doing......fantastic. We have been able to wean her oxygen down to .25 liter flow most night, although sometimes she needs .5 in the beginning. 8 weeks ago she was at .75 continuously.
I haven't put ANY thickening agents in her liquids for the last 6 weeks. None.
She stopped drinking if she saw me get the packet and put it in her cup. So I would hide the packet and mix it where she couldn't see me. That didn't work either. She did this before where she refused to drink anything thickened. I am very careful about what we give her to drink. Of course I never give her water, juice or anything super thin. She only gets whole milk or pediasure.
Now, that's not to say she still isn't aspirating. And some could argue that since she is not taking her drinks thickened that is a bigger indication of needing a G-Tube. And that may be.
We are in no way against her GT. We just want to be educated.
Faith had 7 tests....SEVEN come back at profound hearing loss. So profound in fact, she couldn't even register on the maps. And today, here we are, without a Cochlear Implant, with hearing aids, because He was the director.
And again. That's what we want. Not for Him to "prove" Faith doesn't need a GT, because she may. But we want to release this to God, trust Him, lead us in the right direction for our family.
"And they that know thy name will put their trust in thee: for thou, Lord, hast not forsaken them that seek thee."
Psalm 9:10
Even though she has a little cold now, her sats are perfect. She has been eating okay, not great.
I will probably ask for another swallow study to be done before the G-Tube is placed, if they do not already do one before the surgery.
This is a huge decision for us. One that will, for the next few years, impact us greatly. And with that, we want peace, from God. Please pray for us.
Faith's ENT surgery is in a couple weeks & they will also look down her airway for some possible concerns there. She will also be admitted over night (at least one night) and then the next day they want both Grace & Faith to be seen by our pulmonary doctor.
Grace's glasses came in last week. And so far she has been doing just as good with them.
"And to know the love of Christ, which passeth knowledge, that ye might be filled with all the fulness of God.
Now unto him that is able to do exceeding abundantly above all that we ask or think, according to the power that worketh in us"
Ephesians 3:19,20
