
70 DAYS......that's how long we have been here.....whew!! We are happy to even be able to celebrate 10 weeks with our little girl. She is doing better and better. She has had quite an eventful day today. Last night her IV failed so they had to put another one in her other hand...poor baby. Then this morning, they put a
PICC line in her other arm because they were unable to get it into the arm that her IV was in. They are weaning her down on her methadone, they have gone down on her oxygen...she is on an 1/8 of a liter now and doing well. I will be SO thrilled if she actually goes home without oxygen, but I think that may be wishful thinking. She still seems to be a little uncomfortable from her skin graft, as well she should. I have heard from several people that the graft site hurts the most out of the whole procedure. They plan on taking off or changing the wound vac tomorrow. But the biggest news of the day is that they took her NJ tube (feeding tube to her intestines) out and put a new one into her stomach (
NG tube) which she absolutely HATED by the way. They decided that while she was in the
PICU, they might as well just try to see how she does with an
NG tube. They will do continuous feeds to her stomach and then if she tolerates this well, they will start
bolus feeds which means they will give her food over a 30 minute period every 2-3 hours. She has been on the
NG feeds for a little over 2 hours and so far she seems to be tolerating it well. They are going to keep her in the
PICU tonight because she is on
NG feeds now and because she has to be on the wound vac until tomorrow. So another full night of sleep for me!! I need to really start savoring my full nights of sleep because they are about to come to an abrupt end! There is still talk of us going home next week sometime, so we are gearing up.
p.s. Thanks again
Brytten for the blanket (and to your sister in law for making it!) I get SO many comments on it. I call it her mink coat. There are a ton of people wondering where you got the cute material? Anyway, thanks again, I love it!
11 comments:
I love her-she is so precious! Thanks for sharing her amazing life with us! Enjoy your nights rest!!
Wow, it's funny how each day doesn't turn out how you expect it to. I thought you would be hangin' on the 3rd floor today. There is a lot of good reasons to be in the PICU-- sleep is sure one of them.
That would be such a blessing if she did ok on the NG tube, even better to go home without oxygen! ~ Well keep praying
wow - a light at the end of the tunnel! I can't believe you might get to take her home in just a few days!! She looks wonderful! I am so happy for you guys!
kristi
Wow, I love to read good posts like this. She has come so far! I am so glad to hear about the NG, that would be great. We can't wait to have her home, but you're right... enjoy your free(sorta) PICU babysitter!
wow!
What a journey this has been! I'm sure many more journeys to come!
Playing at the park, halloween, Christmas, ect...
Love that baby girl..and her mink coat!
Glad she is doing so well.
Tam
How exciting! Hopefully with a few prayers and Gracie's strength she will keep the feeding tube the way it is. That would be so great if she got to go home soon and without oxygen!! Prayers will always continue. Thanks so much for sharing your baby with us!
Your welcome, so glad to see how well she is doing. I'm not sure where she gets the material, but I can ask. Enjoy your full night's rest as you can see it is 4:30am and I will be up until 9 when my mom gets here. LOL!
Brytten
I occasionally check to see how Gracie is doing when I am on Kaidences blog. She is another amazing miracle. I am so happy that she has made such incredible progress. Blessings to all of you. Debbie Mitchell
It's so nice to see her all snuggly and warm instead of with only a diaper and full of wires and tubes. She has come such a long way and she is going to be so happy when she realizes all the fun that is ahead of her at home with her family!
Go go go. Definately sounds like the momentum is forward, with no steps backward. How cool. Hope to be reading your posts from HOME soon.
What a cutie! Abby was on oxygen 24/7 for over 4 months before her Glen. At first it felt impossible, but it really wasn't that bad. Praying you guys get to bring her home soon!
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