Home!!

We rolled into ole Lenoir NC about 800 last night. Thank ya Lord for home!  Have to be back in Charleston in a week for staple removal but couldn't stay away from home any longer so we'll just drive back next Wednesday.  Just want to earnestly thank each and every one of you for the kindness, love and prayers called out for me and my family.  This has been the most difficult journey for me personally, Ever. The road to recovery is still long and I'm sure curved but at least now I'm aware of the road, and the direction, from what I've been told I wasn't aware of many things for quite a few days.  The Lord is Good in all things; easy and tough, good and bad, happy and sad, mountain and valley. With love and deepest gratitude, April

Day 8 post op

Well I've got all of my girls back under the same roof! April was discharged from the hospital a little after lunch time yesterday and is doing really well. She still has some pain but is mainly complaining of "tightness" in her stomach from surgery. She still has her staples in until next Wednesday so it hurts for her to travel far so it might be after her follow up appointment until we can come home. Bailey is still doing really well. My biggest challenge now is getting all of them to follow a diabetic diet! Keep the prayers going. We're going to try and get out and walk some today. Pray for strength and minimal pain for April. Missing home!

Day 7 getting out!

Another good day yesterday...April got her drain out and we walked a lot yesterday...She's getting better every day. She is so strong and so brave it's hard for me to convince her to slow down now. Had to say goodbye to her sisters yesterday along with my sister and my niece Megan but we'll be back home soon! Wanted to also say good luck to my sister in law Caroline as she leaves for Africa on a medical mission trip today. We love you and are praying for you Caroline! Praying for you too Jon while you're home with the kids by yourself! Drs said we're getting out of the hospital today but we're going to stay in Charleston until April can get her staples out so she can travel comfortably. Please keep the prayers going. GOD is so good!

Day 6 post op

Well yesterday was another busy day. April got her catheter, epidural and central line out. She is taking all meds by mouth. We walked several laps throughout the ward and had some visitors! My uncle Neal and Aunt Cheryl stopped in for a visit and took my mom and dad out for a much needed lunch break. Eric, Julie, and Delaney Parsons with Jenna Pittman snuck in for a nice surprise visit on their way back from Florida. Rebekah and Megan are here and tucker showed up Friday to brighten Baileys day along with his parents Ricky and Debbie Beane. Whew! April and I really appreciate our friends and family...y'all will never know what your thoughts and prayers mean to us. Today we're working towards getting her drainage line out and get out of this hospital! Please keep the prayers going...April is still in pain and her potassium is a little low. Bailey is doing well but still adjusting to real foods. They're making her sick every time she eats. Missing home!

Day 5...getting better

Well yesterday came with a lot of developments. April was on a trial drug for inflammation that was causing a lot of confusion and drowsiness. We requested they stop the trial study and within 45 minutes she started to improve. They were able to get her off of the pain pump and get her onto oral pain medication every 4 hours. We also got into a regular room and walked a little bit around the room. The surgical team just came in and said they're going to stop her iv fluids and take out her epidural and catheter. They also told her she can eat solid foods today and take a shower. Praise JESUS!  She's still in a lot of pain so please keep praying. All of you that know April know how she is so I expect to do a lot of walking today once she's disconnected from everything and more mobile..i may not be able to keep up! We love all of you and really appreciate your prayers!

Day 4 post op

Well we didnt get out of icu yesterday..the hospital didnt have any rooms so hopefully today. April was able to sit up in a chair all day yesterday and start a liquid diet. Last night was a little rough. She didnt want me to leave so i broke the rules and stayed in the icu with her all night. Shes still confused and its starting to really annoy her. We talked to the night dr earlier and theyre going to stop this trial drug and see if it improves...hopefully we can get up and walk some today. Please continue to pray that we can get over this hump and keep on the road to recovery.

Day 3 post op

April is way more alert this morning but she is in some pain. One of the residents came in and told me they want to get her out of the icu today...please keep her in your prayers going forward that the LORD will help her with her pain and to continue to improve.

April and Bailey update 7/23 pm

April is very slowly starting to wake up a little bit at a time. The nurses think its the trial drug that she's on that's making her so sleepy. They took her ng tube out today let her have some ice chips. She sat up in a chair today too so we're moving slowly but surely in the right direction. On another note, Bailey got her staples out and got off of her fat free diet..She was so excited to get some Wendy's chicken nuggets today...please continue to pray that April starts to wake up more so we can start walking and get out of this icu!

Mid morning day 2 update

April is still really sleepy...just talked to the doctors making rounds and the anesthesiologists. Everything is looking great. They don't seem overly concerned with her drowsiness. They said they would rather her be comfortable than more awake and in pain at this point. Please keep praying..

Day 2 post op April

Got to see April this morning for about 15 minutes before they kicked me out for shift change. She's still really sleepy. The night nurse thinks it may be a side affect from the trial drug she is on. The doctors are supposed to discuss during rounds today. Continued prayers that she can become more alert so we can start the road to recovery and get back home! I'll try to update the blog throughout the day.

Bedtime update

April's been really lethargic today which is to be expected...the nurses and doctors all say shes doing great though. Her sugar has been stable all day which is awesome...tomorrow they hope to get her more awake...keep praying!

Morning after

Just got to see April this morning...nurse said she did great last night...she was able to sleep all night which is rare for a new surgery patient. She's still very sleepy and says she can't focus which is driving her crazy...but other than that she is doing amazing! They are going to cut back on her pain meds gradually today so she should wake up more and more as the day goes on. I can't figure out how to put pictures on this blog or I would post a pic of just how beautiful she still looks after major surgery. :)I'll try to get one of my brilliant daughters to help me post a pic later today. Thanks for all of the prayers! I told preacher Safriet last night we're living proof they are working! Keep praying!

Islet transplant complete

April's back in icu now...they were able to harvest 300000 units which is awesome...thank you LORD! Trying to wake her up now so we can go back and see her...keep praying!

Out of surgery!

April's out of surgery and on her way to the icu! Dr Morgan said the procedure went great and they should get a good islet harvest! Keep those prayers going! Thank you JESUS for taking care of my family!

April update...

Well April's surgery is going well so far...her pancreas is out and though it obviously has a lot of scarring, the doctors are hoping for a high islet yield...everything is going well..couple more hours of surgery if everything continues to go well...keep the prayers going!

Bye bye you miserable organ....lol

Sitting here with my sweet hubby waiting to go down to the OR.  Praying for a textbook surgery and guidance for all those with me.  Praying for patience and peace for those in the waiting room because their job of waiting today is far more difficult than mine, believe me, I've done it twice now.  Thanks to all our friends and family who have prayed and supported us through all these years of pancreatitis, or as we call it at home The P Word lol.  Bringing up the rear is mom, so here we go.......

Last up.....my turn

Just got admitted for my central line and to start the research drug or placebo, whichever it may be.  The research trial they asked me to participate in involves receiving an IV med for seven days that they hope will improve islet transplantation.  The docs don't even know if I'll be getting the placebo or the real drug.  I think I'll get a report years from now that tells me. Lol.  Then tomorrow morning I go down at 515am for surgery. Just please be in prayer for me but mostly Thomas and the girls.  Pray for their patience and strength as I go through this surgery and recovery.  Thanks everyone for all your support, prayers and love.

Day 10 Post OP

Day by day things are getting a little easier for Bailey.  She is still very weak and tires easily but strength and endurance will come.  We took a very brief trip to the beach today.  The heat and humidity are tough on nausea and pain.  We walked along Folly Beach and drove around Charleston.  Tomorrow starts the weekend and preparation for our final leg of this journey on Monday, my surgery.  Prayers for my upcoming surgery would be greatly appreciated. Missing NC and family.

Day 9 Post OP

Bailey is doing really good today.  Had another long walk and now nap time. She's lost some weight but that is common after this surgery and being on a no fat diet isn't quite helping put weight back on. Each day is a little better. Thankful the worst is behind her. Thankful for all the love and support from everyone. But mostly thankful for merciful God who has all things in his hands.

Day 8 Post OP

Bailey has had an up and down day, as will most be for a few weeks.  We actually went to a mall, at her request,  and she walked for over an hour. She is wore out and ready for pain meds and a nap now,but she did great.  The no fat diet is still one of her biggest obstacles and she has dropped some weight. .Hopefully at follow up next week they will add fat back in because she doesn't have much weight to spare as it is.

Photo for the day are Daddy and Addison who we missed terribly these last few days. Glad to have them back with us. :)

Continue to pray for Bailey and our family please.  Prayer works and God is in control. 

1 Week Post Op....

1WEEK POST OP = DISCHARGE = BAILEY ROCKS.....Yep that's my girl!

Doctor just came in and pulled the drain and said we were breaking out of jail! 

Labs on the drain contents showed the no fat diet has slowed the chyle leak enough to pull the drain but to stay on the no fat diet till at least her follow up in a week.  Guess she will be eating lots of fat free frozen yogurt and pretzels lol. Good thing the apartment we are renting is half a mile from Sweet Frogs.

Thank you everyone for all the prayers, encouragement and support during Bailey's surgery.  She still has a long recovery ahead but we are definitely through some of the biggest curves and construction zones.: )

Day 6 Post OP PM

Day 6 went pretty good. Pain that is to be expected for a while at the incision and some nausea.  The drain is still putting out quite a bit and that will be revisited by the doctors in the morning.  Bailey and I are sitting here waiting on Thomas and Addison to get here! We have missed them terribly!  Bekah and Victoria headed back to NC today. Still struggling to find something Bailey will eat that is no fat.  That is realllllly hard. Not even 1 fat gram till the drain contents rechecked tomorrow.  Goodbye Day 6. 

Day 6 Post OP

Today is going pretty good so far. 
Bailey has walked this morning and is feeling okay. Dr. Morgan said the drain is looking clearer so the chyle leak is slowing. She said to stay on the no fat diet and would recheck the drain triglycerides in the morning.  She thought maybe discharge in a few days with the drain still in.  Continued prayers for forward progress. Missing NC and our own beds. 

Day 5 Post OP AM

Going to take things slow today.  Bailey says she feels a little better than yesterday. She has walked this morning and is up in a chair right now. 
Dr. Morgan says the triglycerides are up in her drain contents so it is a chylous leak.  So that means the drain stays in for now and still no fat consumption.  Bailey's also been hypersensitive to smells and that is causing nausea. 
They are starting her on a med to help with nausea and stimulate appetite. 
Had some late evening visitors arrive for a weekend visit, thanks Bekah Land and Victoria Bailey for coming to see Bailey. :)
Day  5......let's do this

Day 4 Post OP PM

Day 4 ....... oh how glad I am to see the sun set on thee.  It feels like there have been about one hundred hours in this day.  Bailey has been very weak and puny today.  Her drain has been filling up over and over. They think it could be a chylous leak from a cut lymphatic vessel during surgery. They are going to watch it a few days and Bailey will have to be on a no fat diet until it is proven not to be or clears up.  Just pray for Bailey and that tomorrow will be a better day. 
Included is a picture of the sunset over Ashley River from her window. Pretty sure it was sent to remind me that God is in control even in the valleys. 

Day 4 Post OP AM

Can't believe it's day 4 post surgery and then it also feels like we've been here months.  She wasn't feeling like having the paparazzi around this morning, so no picture.  Still working through the pain. The epidural is a good/bad thing I reckon.  Good when it's in and numbing the area, bad when it goes away and you have this added pain you weren't feeling before.  It has frustrated her because she is wondering why it's getting worse instead of better. I have to remind her it's not getting worse, just that she's feeling more of it that was already there but was being masked by the epidural. 
Today's plan is to take the pain pump away, pull the surgical drain out and get a shower. 
Alright Day 4, let's do this..... 

Day 3 Post OP PM

Day 3 has been productive but rough.  Lots of pain today but they did remove the epidural.  She walked four laps today and after one of the walks, she and papa took a tag team nap. :). Just taking the ups and downs, day by day, knowing the Lord is all powerful and watching over her.

Day 3 Post OP AM

Bailey had a rough night last night. Lots of pain and belly swelling. Surgery team came in and said it was normal.  IV went bad and swelled up her right arm, so they had to stick her a couple of times to get a new one started. 
Highlight for the morning though is that she got to try some regular food.  She had half a grilled cheese and a little chicken noodle soup. 
Plan for the day is to get the epidural out, stop the pain pump and transition to pain meds by mouth. 
Low for the day is that Thomas had to head back to North Carolina for a few days to get Addison and go to a school function for her.  We miss him badly and it's only been an hour but we he returns he'll be back with my Addison who I've missed terribly.  Also, Tucker, Bailey's boyfriend headed back with Thomas, not a problem for me lol but Bailey misses him.
Continued prayer for recovery and healing would be greatly appreciated. 
Thanks friends and family for your continued love and support.

Day 2 Post Op PM....

Finally got into a regular room this evening.  Bailey has been really wore out today. She has slept most of the day, I guess having all those lines pulled, no rest in ICU and taking a short walk, has run her down.  She needed snuggling from her daddy to rest. :)

Post OP Day 2 AM....

Still in ICU this morning. Hopefully today we will be in a regular room. NG tube is out, bandage off incision and now getting ready to remove the line in her neck and the Foley catheter. God is GOOD! 

Post Op Day 1 PM

Didn't make it out of ICU today, but by golly she now has the prettiest sparkly purple toe nails on a pair of swollen up feet I've ever seen. :). NG tube, surgical drain, Foley catheter, IV, central line and she insisted I paint her toenails. She is so girly sometimes.  Thanks for all the prayers and encouragement and hopefully tomorrow I'll report back from a regular room.

Special Visitors...

Bailey had two friends drive all the way down here for a visit. She was so happy to see them. Thanks Courtney Morton and Anna Frye for going out of your way to make Bailey smile. Love you girls.

Post Op Day 1 AM

Bailey is doing amazing. Thanks be to God and thanks to all our family and friends for the prayers.  So far has required very little insulin :). Surgery team had to come in during the night to fix a loose staple that was causing some bleeding.  Seems to have slowed now, think its no biggie.  Plan for today.....
1. Get in a chair.  2.  Get off the oxygen
3.  Maybe regular room tonight... if not, then tomorrow. 

Surgery Done. Thank you Lord!

The last hour has finished up a big part of Bailey's surgery. Islet cells are in and they just extubated her. She is very groggy but awake and breathing on her on.  She will be in ICU a day or two and then out to regular floor. Thanks for all the prayers and encouragement.

Waiting on islets to come back.....

Just got to lay eyes on our beautiful daughter for a moment in ICU while she waits for her harvested islets to return from the lab.

Part One Over.....

Just spoke with Dr. Morgan and the surgical portion is over. Pancreas, spleen,gallbladder and portion of intestines out. Incision is closed. There is a tube through the skin into the portal vein. The pancreas is off to the lab for harvesting of islet cells, which will take about four hours. Bailey is intubated and moving to ICU to wait for islets to come back. Then they will take her to interventional radiology to transfuse the islets.
Dr. Morgan said it was a straight forward case, lots of pancreatic scarring but hopes there will be a good islet yield.  Thank you everyone for prayers and kind words.  The big part of surgery is over.

Update 1015 am

Just got call from the OR, they just got gallbladder out and have started work on the pancreas. So far no surprises. Thank ya Lord.

Off to Surgery

Just rolled her back.  Prayers, prayers, prayers please.

Here we Go......

All checked in and waiting to get stated. She is still smiling.  I pray God lays His hands upon all those surrounding her today, that he guides her physicians and nurses and that he gives us peace and patience while we wait for her to come out of surgery.  Thanks in advance to all our family and friends that I know are praying for her today as well. 

Bailey's Last Meal

Bailey's request for her last meal before surgery was Japanese. Found a place outside of Charleston to celebrate Papa's BDay and Bailey's journey toward being pain free.