Here's Elise this am after her surgery scrub bath. You can see on her face where she scratched herself the other night.
This is her pitiful look to me saying, "Why aren't you feeding me?"
This is Elise in her transport crib to go to surgery.
On our way.
This is us in the holding room. She was really upset that we weren't letting her eat.
Here are the docs taking her away. The procedure itself took less than 20 minutes, and then the
ENT doctor looked down her airway. I don't know the results of that yet. Everything went real smooth. They did not have to
intubate her which is fabulous! She got to eat after returning to her room in the
NICU which calmed her, and then she went down for a nap, and has been sleeping now for an hour and a half. So, now we wait for her new medicine
Flolan to arrive, I've been told tomorrow. This is the long term medicine that will be given
continuously through the
Broviac she had placed today. Jason and I will be further educated on it later this week, but from what I've heard already we have to mix the drug everyday, and it is only good for 24 hours once mixed. The pump she will go home on is bigger than I thought, and will require her to wear a backpack when she is older. Hopefully we can get her weaned completely off oxygen so we don't have to tote around too many things. Other than weaning her O2, we will now work on
titrating the
Flolan to a tolerated dose (which I've been told takes a few weeks), and getting her to take all of her feedings from the bottle, so we don't have to go home with the
NG tube. Sounds like a lot to do, but in comparison to everything she's been through already, it should be a breeze. I'll post again on Thursday. Love you all, Kristin
Here's Elise this am after her surgery scrub bath. You can see on her face where she scratched herself the other night.
This is her pitiful look to me saying, "Why aren't you feeding me?"
This is Elise in her transport crib to go to surgery.
On our way.
This is us in the holding room. She was really upset that we weren't letting her eat.
Here are the docs taking her away. The procedure itself took less than 20 minutes, and then the ENT doctor looked down her airway. I don't know the results of that yet. Everything went real smooth. They did not have to intubate her which is fabulous! She got to eat after returning to her room in the NICU which calmed her, and then she went down for a nap, and has been sleeping now for an hour and a half. So, now we wait for her new medicine Flolan to arrive, I've been told tomorrow. This is the long term medicine that will be given continuously through the Broviac she had placed today. Jason and I will be further educated on it later this week, but from what I've heard already we have to mix the drug everyday, and it is only good for 24 hours once mixed. The pump she will go home on is bigger than I thought, and will require her to wear a backpack when she is older. Hopefully we can get her weaned completely off oxygen so we don't have to tote around too many things. Other than weaning her O2, we will now work on titrating the Flolan to a tolerated dose (which I've been told takes a few weeks), and getting her to take all of her feedings from the bottle, so we don't have to go home with the NG tube. Sounds like a lot to do, but in comparison to everything she's been through already, it should be a breeze. I'll post again on Thursday. Love you all, Kristin
7 comments:
Glad to hear that Elise's surgery went well. Poor girl not getting to eat...I know how grouchy I am when I haven't eaten. :)
I really enjoyed our phone conversation the other evening. It was so nice to hear your voice. Please feel free to mis-dial me at 11:00 PM anytime! :)
You're amazing Kristen! Elise is in such good hands with Jason and you. I'm sure that you'll pick up on the home care needs/responsibilites faster and with a better understanding than 99% of the other parents in that NICU.
Uncle Don
Kristin, Jason & Elise, Glad the surgery went well. You are in our prayers and I know it won't be long and you will be home. You are wonderful parents and Elise is lucky to have such a loving and supportive family. Take care.
Love Barb
YAHOO!!! We're excited over any and every positive step. The pictures are fabulous -- you are all so beautiful and precious. Thank you again for sharing so openly with those of us 'at a distance'. Love, Jane & Sam
Kristin & Jason,
I'm so glad that today went well (and quickly). What a relief!! I'm glad she didn't have the nasty tube down again. Okay . . . step by step you'll be back in Spfld soon.
Take care and hang in there.
Amy
P.S. Happy 3mth B-day Elise!!!
I am a friend of Debbie Kimbrough and I just wanted you both to know that I totally understand what you are going through. My daughter is older but she was diagnosed when she was 19 with PPH. She is now 26 and still on IV medication.
Hang in there the Doctor's @ Barnes are AWESOME!
I will keep you and Elise in my prayers and may the GREAT Physician be with you always!
Happy Birthday Elise! Keep growing, but not too fast. You mommy and daddy want you to stay a baby for a little bit longer!
Kari
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