Hello Everyone,
Looks like your stuck with me again writing on the blog today. Due to our frustrating day, Jason doesn't feel up to writing about it so here I go again.
We came in this am to Elise breathing over 1oo times per minute (too fast), and her O2 sats hanging out around 80% (too low). They took a chest xray and found her pulmonary edema (fluid on the lungs) had returned, requiring her to need another dose of Lasix (a diuretic), which she hasn't needed for 2 days. A minor set back, but a set back none the less.
Another issue we have been dealing with is her weaning off sedation. Since her PICC line was removed Sunday, she has been taking her sedation by NG tube, and has been continuously sedated. Which means she sleeps constantly, with very few awake times. The doctors assure us that they are working on a decreasing dose, but it seems like it is taking too long. And as you can see in the first picture, she looks quite drunk today. Which even though is rather amusing, is not what we want.
And to make matters more frustrating, it looks as though our original transfer back to St. John's plan is not only not going to happen, but it looks like our stay in the hospital could be up to another month. Our only hope is that Elise keeps proving the doctors wrong with her rate of improvement.
So as you can see although this day wasn't a total 2 steps backwards, we definitely didn't go forwards any.
As we end our day with a minor decrease in sedation, and an improvement in lung function after the lasix. I'm holding Elise in my lap, and she's looking back at me with her big, beautiful, steel blue eyes.........blowing bubbles in her mouth.
Thank you everyone for all the mother's day wishes, and cards. We miss you all, and can't wait for you to meet our precious little monkey.
Love Kristin, Jason, and little Elise
Hello Everyone,
Looks like your stuck with me again writing on the blog today. Due to our frustrating day, Jason doesn't feel up to writing about it so here I go again.
We came in this am to Elise breathing over 1oo times per minute (too fast), and her O2 sats hanging out around 80% (too low). They took a chest xray and found her pulmonary edema (fluid on the lungs) had returned, requiring her to need another dose of Lasix (a diuretic), which she hasn't needed for 2 days. A minor set back, but a set back none the less.
Another issue we have been dealing with is her weaning off sedation. Since her PICC line was removed Sunday, she has been taking her sedation by NG tube, and has been continuously sedated. Which means she sleeps constantly, with very few awake times. The doctors assure us that they are working on a decreasing dose, but it seems like it is taking too long. And as you can see in the first picture, she looks quite drunk today. Which even though is rather amusing, is not what we want.
And to make matters more frustrating, it looks as though our original transfer back to St. John's plan is not only not going to happen, but it looks like our stay in the hospital could be up to another month. Our only hope is that Elise keeps proving the doctors wrong with her rate of improvement.
So as you can see although this day wasn't a total 2 steps backwards, we definitely didn't go forwards any.
As we end our day with a minor decrease in sedation, and an improvement in lung function after the lasix. I'm holding Elise in my lap, and she's looking back at me with her big, beautiful, steel blue eyes.........blowing bubbles in her mouth.
Thank you everyone for all the mother's day wishes, and cards. We miss you all, and can't wait for you to meet our precious little monkey.
Love Kristin, Jason, and little Elise
6 comments:
Kristin, Jason & Elise -- thank you for your continued communication -- especially on those days when you'd probably just as soon not recount your experiences. Sometimes the best communication is simply 'know that we love you.'
I'm sorry to hear that you had a disappointing day. The ups and downs must be so emotional for you. I wish I had something magical to say, but I don't. Just know that we are all here pulling for you every step of the way, whether that be a forward step or a backward step. Thank you for taking the time to keep us informed even when you probably don't feel like it.
Much love,
Christy, Shad & Connor
P.S. Call me crazy, but for some reason I just love that "drunken" picture of Elise! She is communicating so much with her eyes .... like, "get me out of here!" :-)
Hang in there little monkey! Even though your mommy and daddy think u look goofy in that pic i was glad to see your beautiful blue eyes and in 2 weeks u have changed so much! It was good to hear from u Kristin! Keep up the strength and good faith! by the way u also look great skinny minny! Love ya and still praying everyday -Tess
KRISTIN, JASON AND ELISE. THERES STILL A LOT PF PEOPLE IN BRANSON PRAYNIG FOR YOUR. KEEP THE FAITH AND STAY STRONG. THIS WILL BE OVER SHORTLY AND YOU WILL ALL BE BACK HOME AS A COMPLETE FAMILY.
Hang in there....Elise is in the arms of the best of parents, top knotch doctors, and even better than that, the hands of The Great Physician!!!
I was in the bathroom at work yesterday, and a lady stopped me and asked me if I was the one with the grandbaby in the hospital. She said she and her church and friends had been praying for Elise and still were. I did not even know this person!
We know that God works all things together for good...it's just sometimes hard to see the good when you're in the middle of the "thing".
We love you guys!!
Gail
Kristin and Jason,
Hi! I am the nurse that cared for Elise the night see was born at St John's NICU. Even though the NICU lives up to it's description as life on a roller coaster, Elise looks wonderful and we are so happy that she has made such great progress. I wanted to let you know that we think of Elise and pray for your family each day and read your blog site often for updates. We were so excited to hear that Elise would be coming back to St. John's NICU. Though that seems to be on hold, we will pray for her continued progress. Thank you for sharing your lives with us! --Jenni,RN, St. John's Hospital
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