Grace is still doing well though last night and today she has been extremely cranky and fussy. We have been weaning her methadone and though they have only cut the dose a little bit it is still very noticeable by Grace.
In addition to this we have worked our way up to feeds every 3 hours, which means she is getting 69cc (that's a little more than two ounces) an hour. The doctors wanted to do gravage feeds, which is basically not putting the syringe on a pump and letting gravity work so she can get the feeling of filling her stomach gradually, but before they do this I think she needs to work up to it so that is what we are doing. Once Gracie seems to tolerate getting the 69cc in a half an hour on the pump then we will try the gravage feeding. She doesn't throw up much just about 5-10cc but whenever her stomach is full she starts coughing and chocking retching---it is actually quite scary to watch.
So I think we are still aiming to go home either Tuesday or Wednesday--there is a small chance we could go home on Monday but I hope not, I'm just not ready. To be perfectly honest I'm scared to death to go home. It's not that I don't feel confident in providing her care, like giving meds, her shots, etc. (though I haven't learned how to put in the feeding tube yet), it's more that I'm afraid of what could happen. We have made it so far and yes she is stable and doing great, but forever our lives will always rest upon how long Gracie's heart will last. All we can do is trust in God and know that He is in charge and hope and pray that she will live a long life, full of joy and happiness.
3 comments:
It is a very daunting task to go home. It scared me to death although it was something we wanted so badly for Ryker. It is hard to trust that the Lord has a plan that we not only have to trust in, but it is a plan we do not have knowledge of. The blessing of family and prayers will help to ease the unknowns. We pray for Gracie every day, and love her and Morgan so much! We can not wait for her to finally come home!!!
that's so great that grace is progressing so well!
That is wonderful that she will be going home soon. I know that it is scary too. You guys are amazing at how well you have handled this. We will keep you in our prayers. I am sure you will all adapt amazingly as you have so far. Good luck with everything. Lately Leighton has been crying to see "eeanna" instead of Morgan on the computer. He knows that your pic is on your blog. It's really funny.
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