Hope so. This would be a good day.
6 years ago today, July 13, Sierra went on the transplant list. Wow
4 issues today. 1st her pain. They haven't fully gotten on top of her pain yet. She gets morphine and IV Tylenol, but that only lasts a few hours. They are going to do some long-term pain management. The pain is mostly coming from around the chest tubes and Berlin pump sight. If they can get her pain under control she will more likely want and be able to get up, move around, interact, and eat. All good stuff.
2nd, they started her feeding tube last night. and her tummy doesn't seem to be hurting. That's good. She still has zero appetite and probably wont get it back.
3rd Blood clots. As she has recovered from the episodes last week, her blood is clotting faster. A clot started forming in the middle of the night and by 8-9:00 am it was a 1/2cm large dangerous clot. So they did another pump switching this morning at 10. They are hoping to go another day before starting up the heparin / blood thinner because of the internal bleeding. They would like to buy another day to let the bleeding subside, before they start the blood thinner. Just have to see. It's a tight rope they are walking. If they jump the gun and she starts bleeding again, then we start all over again.
4th her lungs. Her right heart seems to be doing better since she has been extabated. Her right lung is still a bit collapsed so she is doing breathing 'games' and exercises to help expand it.
Therapy is coming in at 1:00 to take her on a walk. This will be the first walk in 8 days.
Gage is off with Liz and Michelle and their kids to the park.
We are still laughing about Stacy's 'Pioneer' heritage.
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9 comments:
I've always chuckled at therapist's use of the word "game"!
Well if they won't give you the first pump maybe they will give you the second one! And/or get both and you could have a paper weight at the office and at home and/or give one to Grandpa for his desk!
Hope Stacy is feeling better and the cold isn't going to far....I would offer to send Emergen-C, but I haven't came extra the Extra Strength for Pioneer Women, yet!!
Lindsey Lou keep fighting and being at the top and winning all the breathing games you are playing!
We'll check back in to hear how good the rest of your day is... going to go! We love you Lindsey Lou for all that YOU ARE and for all that you have taught us through being so STRONG! xoxoxoxo
That is great that her tummy isn't hurting! What a bummer for her to not even want chocolate. I remember her as an 18 month old being able to sniff out the chocolate in the room. There are some things you are just born with-that would be from Stacy. Maybe she has the Pioneer strength from Stacy too:)
We will keep praying for more good news, good sleep, smiles, less pain, and of course a HEART! We pray for you every day! You are all amazing and are such great examples of courage and strength to us! Hang in there! Much love - the Barfuss family
I'm so happy she has had some improvements the last 2 days. It is great that she ate even a few bites. You continue to be in our prayers.
April Whitley
I have to agree with your Aunt Cindy. Those pioneers were a bunch of whiners compared to Stacy AND Jason. You guys are incredible.With Love and continued prayers, Dale and Mike Olsen
A joke today for Lindsay:
How much do pirates pay for their earrings?
a Buccaneer.
Beautiful child w/a sweet smile on her face
So full of courage & so full of grace
Each day I send many heart smiles to you
Along wlove & prayers for Lindsey Lou <3:)s
Now, how about a joke to see if you might manage a little giggle , at least a bit of a smile?
Why would Snow White make a good judge?
Because she's the fairest in the land!
We are all so proud of you little one!! JRee
I'm with Hil- I think she got Stacy's super-human pioneer woman strength!! I know I'm a bit partial- but I think my Mom's Pioneer analogy was freaking funny! She called me after she sent it and read it to me and I was just laughing! Mainly because it is SO true!... But you're pretty tough too, Jas! Dustin tells me every day how much he respects you and your ability to be such a great dad, husband, and man in the face of all the adversity you are facing. We think the world of both of you!
Hope you can all sleep well.
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