Please Pray For Quinn Josephine

What a difference a day makes, First the post from last night by my Sheila on www.caringbridge.org

We have had a very long 24 hrs. Quinn continues to have problems eating, she seems in pain when she does. She has been only eating 1 oz at time and the doctors are worried about her nutrition so they put in a feeding tube. Her goal is 110 calories/day. When she is hungry we bottle feed her first and what she doesn't eat after 30 min they gavage into her feeding tube. She will eat 2.5 oz every 3 hrs. She thew up her fist feeding so they are giving her zofran for nausea. She has done well with her last 2 feedings. She also has been extremely fussy and crying a majority of today and last night and they started giving her oral morphine along with the tylenol. Her doctors say that where they connected the 2 pieces of intestine is small and needs to stretch and that could causing her pain along with everything else from her surgery. Quinn's bili was up from 6.1 to 6.6 today. They say that could be from the inflammation from surgery and have started her on steriods not only for the swelling but it can help with bile flow.

Now for the good. Her liver biopsy showed the typical findings for BA but there was no cirrhosis. There was some damage but her surgeon said it was not beyond repair.

The past 3 days she has had one of the kindest nurses I have probably met, McCall. I can't say how greatful I am for her being around. She has given us breaks and made sure we have been taking care of ourselves, she makes sure she gets the answers to all of our questions and she genuinely seems to care about Quinn.

Kolbe came down for a visit today! I miss him so much. We went outside and he played in the fountain. He is such a sweet boy. We took a nap together and I woke to him playing "got your nose" with me. He can really make you smile.

Today has been a very tough day. I am so mentally and emotionally exhausted. I don't think I have cried this much since the day of surgery. I just with there was more that I could do for her. I am trying so hard to be strong but this is the hardest thing I have ever gone through. I just wish this was a bad dream and I would just wake up.

Now today with better info.

First I want to say thanks to her nurse Jackie last night, she took care of everything last night so we could get some sleep. Quinn is doing much better this morning. She seems much more comfortable. Her surgical team says her color is much better and her bili is DOWN to 5.7! We are so excited. We will continue her feedings but she will be on continuous feedings at night to help with her weight gain. We will be going home on feedings and they hope to get us out of here by this weekend sometime. I think the prayer shawls from the church are doing their job! Thanks for all the encouragement during yesterday's difficult day.

We're still sending our thoughts and prayers... wishing for improvement in her condition. Keep up the strength.

My thoughts are very much with you all. I'm so very sorry you and Quinn have to go through this, but I was heartened to read your latest news and hope that her condition will improve steadily from here.
Hang in there, Dan.

Patty

Still thinking about and praying for little Quinn

Dan and Family,
Thanks very much for the updates.
Your willingness to share details helps us pray in detail .. asking God for specifics in lieu of generalities.
Our faith is increased as we are able to see measurable/specific progress.. Example: lower Billi count today !! right ??
My wife and I will continue to hold up little Quinn in our prayers asking her heavenly father for His best as you continue to offer her Grandpa's best.
Randy

Yesterday's post by Sheila
6-21-13
There isn't much new to report today. Quinn's bili was 5.8, so not much different from yesterday. She tolerated her continuous night time feeding until about 6am, then she threw up some. So they adjusted her feedings. We got set up with her home feeding equipment and might get to go home tomorrow! She still doesn't bottle more than a half an oz at a time but I hope that improves with time. Her and her labs will be followed closely for quite awhile. I hate that she's going to be poked so much but it is the best for her. They finally have room for us on peds so we will be moving soon. Child life got us some passes to the zoo so when Kolbe gets here we will take him there.

FROM ME
Lots of excitement yesterday with a big storm coming through.

Oh did I tell ya QUINN IS COMING HOME TODAY

Great news!!

That's wonderful news, Dan! So glad to hear Quinn has improved to the point that she can go home!
May the healing continue!

Patty

Quinn made it home today.....Thank you Lord!!! She is doing good today...so happy to have them all back in town. We had a big wind storm yesterday so when I closed the store at 2 I went to Sheila & kollins to check for damages and Kollins Dad had been there for hours and had it cleaned up. Lots of branches and one limb that damaged the back roof some. Wife Lori and grandson Matt were there helping cleanup. Matt is 11 and went on his first ST1300 ride today for working so hard. Again Quinn is home, thanks all for your support. Please keep it up, like Lori said so any people praying he had to hear our prayers and help Quinn.

That is wonderful news Dan! I will be praying for a complete recovery.

Absolutely wonderful news Dan! Our thoughts will be for continuous improvement for little Quinn.

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Outstanding home is the best place to recoup

Great news Dan!! Wishing nothing but the best for the future.

Thanks Dan, prayers continue for Quinn's complete recovery.

Great news, it's always good to be home.

Nice to have them home but clean up after the wind storm takes my time away from them. They need a little time for them to.

Here is a post by Sheila at Caring Bridges.

It is nice to be home but it is also pretty stressful, trying to get a routine back again. I'm really starting to wish I had a maid! Quinn has vomited a couple times yesterday and today. This afternoon she threw up hard enough that her NG came out and we had to have it replaced in the ER (thanks Robyne). I really wish we could stay out the hospital for awhile. We called and talked to her surgeon on call and she said it is probably just reflux and to slow her feedings down. We will try that for a couple days and we go back for her follow up on Wednesday. Please pray that her bili continues to go down!

we go back for her follow up on Wednesday. Please pray that her bili continues to go down!
Will do exactly that ... 'Getting on my knees and fighting like a man !' (petra)

Posted by Sheila on caring bridge
Sine we have been home we have had problems with Quinn vomiting with her feedings. They had been getting better during the day but every night she would vomit. She had her follow up today and they did an upper gi to see if the anastomosis was too tight and that looked good. She vomited up her ng again so the dr put in a little bigger one that wasn't quite as flexible. He said everything looked good but they didn't have her labs back and he would call us when he was done with a procedure. Well he called as we were pulling into Watertown and her labs were worse. Her direct bili was about the same but her total bili and liver function is up so we are heading back to Sioux Falls so she can get iv antibiotics and steroids. I don't know what to say besides this sucks. I am heartbroken that she isn't doing well. The are not sure if she just isn't draining well or if she as cholangitis. I wish there was more we could do to make her better. I also hate leaving Kolbe again. I missed him so much last time. I wish we could get a break.

Please keep us in your Prayers.

More prayers sent... Hang in there, hopefully a break will come soon.