Saturday, April 2, 2016

April 2016...A year later

Time has gone by quickly! A year ago we were in Cleveland trying to unpack and get settled in the hotel and be there for an indefinite time. A lot of questions were in my mind with no answers.  How long will we be here? How does the transplant process work? How are we going to pay for a hotel and a house back home? And on and on...   But God is faithful and supplies our every need.  There's a peace that He gives to His children. I didn't have all the answers to my questions, but knew God was with me each day. So glad to be back home in Princeton, but am thankful for the many blessings He gave to us along the journey.  We have drawn closer to God through this, learned to have more patience, increased faith and hope and to trust Him more.  We have become a stronger family.  

Since my last post I've been to Cleveland for 2 appointments and have had labs, scopes, and biopsies.  Things are going well.  They have found some polyps in the esophagus, stomach, and intestine on the 2 times I've been scoped but thankfully they are benign.  They biopsy them first and  if they need to be removed then they will.   This last appointment I had, they decided that since things are going so well, we would move my appointment to every 2 months.  I will do my scope and biopsy locally.  My local GI Doctor will send the biopsy to my transplant doctors.  Then I have another month before having to go back for my usual there.  We've  come a long way with getting the appointments moved. After being discharged from having the transplant I've gone from appointments twice a week, once a week, every other week, once a month, and now...every 2 months. How exciting! When we left in September, we were going there every 2 weeks.  So thankful we still aren't having to make the trips that frequently.

I've had the chance to meet some new transplant patients at my appointments and catch up with some I've known. My heart aches for some very sweet people that are still struggling with issues after their transplant.   Keeping them all in prayer along with their families. We all have our own story and each is so different, but we are all fighters. 

Catching up on the kids...Kailey has finished early on 6th grade and starting on 7th grade.  I'm going to have her take a break from it in the summer time though.  Matthew is trying to get caught up in English and Math so he's not in doing any school in June or July. He has completely finished Science and History for the year. Kelsey is working ahead and trying to finish hers a little early.  She keeps telling the other 2 that her studies are a lot harder than theirs.  We have taken some recesses by walking. They have enjoyed it and so have I. One day one of them had a hard time staying up with me and we got to laughing. One evening it was so beautiful that we walked as a family up to Main Street up to the CourtHouse to Pizza Cellar and back home. That was a first in over 6 years.  We've been taking advantage of the nice weather and going to the park also. 

Kelsey made her first Apple pie, crust and all.  It started off as something for both girls, but Kailey lost interest as we began peeling apples.  She went to trying to make apple juice with the cores and peeling.  She quickly realized that wasn't doing anything but make her a sticky mess and quit.  Kelsey did a good job on the pie!! I'll have to keep working with Kailey on it๐Ÿ˜‰.  Although she does enjoy baking and cooking.  They both are big helpers in the kitchen. It's just hard for me to let my kitchen go to them, but I need to let them start. 

I celebrated another first....Easter dinner.  It was delicious! Spiral ham, mashed taters, green beans, deviled eggs, rolls, ambrosia salad, and coconut cream and chocolate pies.  Yummy!  More than that,I am so grateful for the blood Jesus shed at Calvary. That His blood covers all my sins and washes me white as snow.  He has risen and alive forever more!! So thankful for His love for me.  There's no greater love than His! 

Kelsey celebrated her 15th birthday!! I'm proud of the young lady she's become. She's a hard worker, has a big heart, and loves God with all her heart.  My prayer is God uses her at a young age as His vessel. My, does time fly! Seems like yesterday we were walking into the hospital to Labor and Delivery and were so excited to hear we weren't leaving till we had a baby in our arms.  We didn't know if she was a boy or girl till I had her.  What a blessing she is!  

Thank you for taking time to read my blog.   Also for all your prayers, love, and support you show to us!

Valentine Banquet 

Kelsey's first apple pie.  She cut out an A & apple for the middle.
A walk at the park.
Easter pictures

Tuesday, February 2, 2016

Back home

I'm  For those of you who missed it, I have a few posts that I did while in the hospital.   I left off on Saturday, the day after my surgery, so I'll pick up on Sunday.  It ended up a little rough with a bloated belly and getting sick to my stomach.  The Doctors slowed down my full liquids to nothing by mouth. They wanted to be sure everything was okay. I was on no pain meds besides regular Tylenol. By Monday morning doctors allowed me to have a soft GI diet.  I am having to be careful and have some restrictions for right now. Within 4-6 weeks things I'll be able to lift most if not all of my restriction according to my dietician.  By Tuesday I had to get a unit of blood and 4 bags of albumin (a blood product). On Wednesday they were thinking of discharging me but the doctor changed his mind after he was finishing rounding on me and said lets wait one more day and push more fluids in you and send you off to the hotel on Thursday. So that we did.

It felt wonderful to be out of the hospital and at the hotel Thursday afternoon.  The trick was trying to get comfy in a hotel bed that doesn't have controls for the head or feet. It didn't have side rails either to help me get up or lay down. Thank goodness for Nurse Shane.  The World's Best Nurse.  It felt wonderful not having my roommate calling my name through the night to ask when she last had her pain meds or  nausea meds.  She would wake me up and ask if I had gone to surgery yet.  One night I barely got sleep due to her pulling out her picc line, another 45 minutes to an hour she had her NG tube pulled out so once again more bright lights and lots of commotion and then she decided to get up on her own to the side of the bed and she had an Interjugular IV which scared me she was gonna pull it out and then bleed to death.  If I heard her moving I was asking her what she was up to so I knew what she was doing.   I could have written a book! On my last 2 days they offered to move me but I was getting use to her routine and like they told me, you don't know who you'll be put with. You  
really don't get too much rest in the hospital anyways between nurses and aides checking in on you at night.  Along with the sounds of IV machines beeping in the room and hallways a lot of the night.  There was peace and quiet in the hotel with the instrumental music of Jim Brickman playing in the background.  

We had a wonderful weekend together exploring "Little Italy" sharing a pizza together and another restaurant sharing an Italian entree. The pizza was yummy and the entree was okay but Verucchi's had them beat. The pastry shops looked yummy. Lots of goodies that looked scrumptious.

Monday's appointment wentwell.  Things are going good so the doctor let us come home.  We have to return again for an appointment the week of the 22 of February.

Thank you for all you love, prayers, and support along the way and helping make it easier.  To God be the glory for the miracle He has given me! 

Have a great week! 

A picture of my board showing the date of my surgery

Saturday, January 23, 2016

Closing of a chapter...

It is official! As the stoma is now closed, so is the chapter of the past 6 years of artificial "help" in plugs, wires, tubing, pumps, bags, devices, ...!! The surgery was a great success and I am FREE!! God has led me down a long road and though the journey is far from over, it is at a time of jubilee and rejoicing!

Yesterday was a long day for waiting for the call to surgery, but the call finally came around 2:30pm and off I went. I met the surgical team in the OR and was able to share my story with the few that hadn't heard already and was even sharing some recipes! Before going down for surgery, I had written a short poem and had taped it to my colostomy bag for the OR team to read. It read as follows,....

"It's time to put it down beneath. 
My stoma is being closed up, you see.

Since my transplant, it has been good to me,
But now the time has come to be. 

Please don't weep, but rejoice,
For this for me, is a better choice."

Laughter is like medicine, I believe! And I sure wanted a surgical team feeling their best while I was under.

After surgery, I was in recovery until pain was under control with my array of allergies to so many medications. Once managed, I was back in my room upstairs for a good nights rest. Zzzzzzzz

Today has been another great day! A few walks down the hall and easing back into my normal diet has been the goal. Liquid food ("full liquid") diet has been good to me for today. Tomorrow maybe something to chew!

Thursday, January 21, 2016

Another quick update

My levels have come down a little more, thank the Lord! The ultrasound of the kidneys went well. So they now have me on clear liquids and have surgery tomorrow.  I'm not going to get my hopes too high, just in case I get bumped to do an emergency.  It's hard being in the hospital when you're feeling well! There's no way they'd let me go home and come back because I needed the IV fluids.   Thank you for all the prayers and I'll keep this updated.   

Wednesday, January 20, 2016

No surgery, yet...

I haven't had my surgery yet!  My labs Monday showed my creatinine was too high, so they admitted me to get my flushed with fluids, fluids, and more fluids.  I was wheeled down to surgery Tuesday morning and half way down there the transport got a page.   He took the call and said something was high and was to bring me back to my room. They weren't able to do it Tuesday due to the creatinine still too high for surgery.  As of this am it's still coming down,  it's still coming down, but very slowly.  If they do the surgery with it being high, it can cause me to have kidney issues.  I don't need to have any other problems, so in the mean time we camp out here and try to wait it out here in the hospital. No promises, but maybe Friday or Saturday will be surgery.  

Friday, January 15, 2016

In Cleveland we are!

Happy New Year to all of you!! So Thankful for 2015 and looking forward to what God has planned for this year! We ended the year with a church service and fellowship and food  afterwards.  I can't think of another way I'd want it to be! Giving God the glory for what He's done and what He's going to do! BLESSED!!

We are here in Ohio at our friendly hotel (home away from home) in Westlake.  The drive wasn't bad at all.  The sun was shining and roads were totally clear, besides salt on the road. We got in Thursday evening.  I had testing and a Dr's appointment today.  Monday is jam packed with testings and appointments and pre op stuff.  On Tuesday, I'll be having the stoma reversed.  The kids are with us till a day or so after surgery then heading back home.  

Friday evening, after our Dr's appointment, we went for pizza to celebrate someone's BIRTHDAY!  Happy Birthday to my wonderful, caring, patient, and loving husband!!! Afterwards, we went to the store and he picked out some icecream to eat at the hotel. We played Phase 10, but only got to phase 5 and will finish the rest up tomorrow.   

As I was packing for the trip I started cleaning out my last drawer of medical supplies.   It felt so good.  It looks nice not having my bedroom look like a hospital supply room.  In the past several years thats what its become with my G-tube, J-tube,  Ostomy supplies, and everything for my TPN supplies.   I told Shane on the way here I get in a panic thinking I forgot to get my TPN out of the fridge to hook up or bring with me.  It feels wonderful not having to hook up anymore. 

What an intestinal transplant means to me? Being able to go to Church as a Family.  Walking hand in hand with my husband, and him not having to push me in the wheelchair. Having energy to do picnics and go site seeing as a family, and not sitting on a bench alone waiting for them to return.  Not having surprising hospital visits, and missing the kids events.  Going into shops that are small, and not worrying about a wheelchair fitting thru. Being able to be out and about more as a family, and not confined to bed.  Being able to enjoy each day! 

Some are asking about my funding page.  My funding page is on the right side, National Foundations for Transplants.  What a blessing it has been.  Thank you for so much for all who have given.  Whether its been great or small it all helps!  Also thank you for your support with the gift cards, emails, texts, calls, cards, love, and most of all prayers.  Thank you! 

I'll update next week or have Shane.  Have a great weekend!

Saturday, December 26, 2015

I'll be home for Christmas...

It's been busy since my last update and lots to catch you up on.  I had a wonderful Thanksgiving.  The food was all yummy and  very tasty.  I definitely ate my share and more.  But more than my stomach being full, my heart was bursting with gratitude for all the many blessings from God!!!  I have so much to be Thankful for!  I know I say it a lot on here, but I am beyond blessed!  This is nothing I've done, but God and all your prayers. To God be all the glory! 

We've made a few trips back and forth to Cleveland since my last post. Shane and I took off the Sunday before Thanksgiving when we had the bad snow storm that weekend. Not good!  We counted over 15 vehicles in ditches between Princeton and Morris.  Some people were still in the car waiting for a police officer to arrive but alright, other cars were sitting empty from what looked like a few hours prior.  After counting the 15th one, we watched from the opposite side of the interstate a car slide into the ditch and roll 2-3 times.  I was done after seeing that happen right before my eyes. I just cried and prayed and was ready to go back home.  Thankfully God protected us and the roads were clear from that point on and we were able to make it safely to Cleveland.  We returned back for another scope, biopsy, and doctors appointment the second week of December.  After the appointment we stayed for a dinner that they were serving to the liver and intestinal transplant patients.  We stayed over, and the next morning went to Life Banc,  an organ procurement center.  There I shared my story with the staff. There was probably 40-50 staff and not many dry eyes by the time I wrapped it up.  It was extra special having Shane and the children sitting in the front. As we were leaving this lady came running after us as we were backing up. She introduced herself and said,  "I'm Julie, the one who called you the day we had a match for you."  She was someone I hadn't met through my process and was it neat to finally meet her.  We made one more trip this past Tuesday for a scope, biopsy, and appointment.  We took thte kids with, because if I had to stay there we wanted to all be together for Christmas.  Turns out all was well and we were able to come home, just in time for Christmas.  We made it there at 1:30 am. We got to bed around 2 am, got up at 5 am and out the door and on the road by 6 am. I had labs at 7 am and then a scope and biopsy. Afterwards, a doctors appointment, a liter of fluid, a nap at the hotel and a text later that afternoon saying all is well, head home.  So, back on the road once again, but happy to be heading home.

I have still been having issues with a high creatinine and having to do IV fluids to help flush my kidneys.  For this reason I will be having my stoma reversed or taken down. They feel that it will help my creatinine level and allow me to absorb more.  They were looking at doing this in December, but I just couldn't put my family thru that around Christmas time.  I wanted to enjoy not having to be in the hospital or sick.  They were okay with that,  so we are juggling around the doctors schedules for a date. Not positive, but maybe looking at the 3rd week of January.  Excited to get the last thing finished and behind me, but not looking forward to another surgery & being gone around 2 weeks or so, but I know it needs done.  Other than that,  things continue to be going well besides the migraines, but hard to complain when looking back how my health was a year ago.   I am getting ready to go on my 7 months post transplant!  Thank the Lord for my Miracle!  Christmas was a little rough at times for me as I thought of my Donors Family grieving, my heart hurt for them.  My heart ached for them knowing they were missing one around the table or sitting in the living room. The first year without their loved one. All I knew to do was pray for them.  Yes, I  sent a letter and a few cards to them within the past 3 months.  I was really hoping to hear from the family by now, but it hasn't happened.  The way the process works is, I send my card unsealed to LifeBanc, they contact the family each time I send a card, the family decides yes or no to having it forwarded to them. They thankfully have said yes every time.  Then the process is the same if they send a card to me.   Live each day as a gift from God.

The children are doing good!! They are keeping busy with school.  They have been a wonderful help around the house with things. I think Matthew keeps growing about every couple weeks.  I'm so thankful for the 3 precious blessings God has given to us.  They each are a blessing in their own unique way. They all love God and have tender hearts.  I pray as they get older, that continues.  For Sunday School they did Random Acts of Kindness throughout the year.  I have tried putting that in them prior to the RAKS being done.  I just want them to be sensitive to others needs and help brighten others days regardless if they are rewarded for it or not.  We live in a self centered society and I want my children learning to give.  And that it doesn't have to be of finances, but maybe their time, or some of their abilities.  It pushed them to come out of their shells and let Gods love shine through them.  Our church choir did a Christmas musical and the girls were in it.  The songs were beautiful and the presence of the Lord was there!  I love our children and am so glad we are able to build memories with them. Time is flying by and they are growing fast.  

Some have asked about my comment section.  You can not leave a comment on the blog, but I do have email.   My email is    

I also had some ask if I'll be staying in the hospital the time we are there for the surgery in January.   I will be in for 4 days or so, but before and after we will be staying in the hotel we usually do.  The funding page is on my blog, for those of you who have asked about donating to it. It will be up as long as I'm kicking and breathing.  There will always be expenses between trips back and forth to Ohio, hotels, hospital bills, medications, and the list goes on...    God has been so good to us and blessed us time and time again whether its been a big or small donation-its all a huge blessing!  

I hope to update this by next week, but in the mean time I'll leave you with a quote I read at the end of my speech 

Life is like a camera 
You focus on what's important
Capture the good times
Develope from the negative 
And if things don't work out take another shot