Sunday, August 23, 2015

KIDS, and TOMATOES, and STEAK...oh my!!!

It's not lions, and tigers, and bears, oh my!  Lots to update you on though.  First thing, my heart is full and dancing with my 3 precious kiddos being back here with us. All 3 of them have grown.  Their voices are music to my ears.  Lots of hugs and kisses, giggles and laughter, picnic, cookie making, hamburger eating, walking in the park, grocery shopping, going together as a family to church, ice cream cones, watching the sunset at the lake, prayer time, and the list continues to go on.   We are doing things as a FAMILY and it feels so wonderful.  It's so nice to be a part of the outings and do things not watching from the side lines or staying back because I'm too sick.  

The kids have started school  and are working hard.  I have full appointments still on Mondays so they don't do their offical school those days.  They keep themselves busy with reading  a book on a President or a State and then do a report on it.  We move through 4 different buildings, so if they did their actual school, by the time they got set up and logged in, it's time to move on to the next place.

Things are going well with me.  No signs of rejection, praise the Lord!  I still have rough days like fighting bad headaches from the prograff ( anti-rejection) medication.  Still with the things I am having issues with it's better than how things were before.  Thank the Lord!  I've been able to add more foods to my list to eat.  I've had a few tomatoe sandwiches which were yummy. I've also been able to add a few more fresh fruits to it also.  And a drum roll please....a juicy delicious New York Strip.  I savored every bite, with not one piece left behind.  I didn't feel nauseated nor did I get sick!!  Thank you LORD!!!
As of right now I'm still doing labs, scope and biopsy, and Dr. appointments every Monday.  That means up at 5 am and on the road by 6 get there for labs at 7 and end the day usually around 4-5 pm.  The kids experienced their first BIG day like that last week and handled it very well.   

Hard to believe it's already been 2 months and getting ready to go on my 3 month aninversary!  So blessed for every miracle God has given to me.  Without HIM and your prayers I wouldn't be this far!  I am greatful for your prayers, love and support.  A BIG thank you for each of you who have helped support us financially.  Each of you who have given through the funding page that's on my blog here on the right side or sent it in a card.  I understand times are tough so not everyne is able to help that way.  Whether it was great or small, I promise it's a huge blessing to us with us having a house and hotel to pay for along with a lot of added expenses.  Also thanks to those who have brightened my day with cards and letters.  It's one of the highlights in my the day to go down to the desk and get mail. To open and read a card and it not be a bill or something medical.  Just little things that make my day.  

I've been able to meet a few sweet fellow intestinal transplants patients and get their info to keep in touch with them.  Also got to catch up with my sweet roommate who had a liver transplant.  Our families went and had icecream together after her appointent.  So thankful that God has allowed  all our paths to cross and meet others.  I pray I can be a blessing to those around me.  

May you have a wonderful week!!

With love-
Jamie

Friday, July 24, 2015

A few steps back...but gaining ground again :)

I'll try to do my best to fill you in on what's gone on the past few weeks.   Back on July 12th, Shane left to head back home for the week to catch up on a few things around home and the shop.  His Mom and Aunt came to stay with me while he was gone.  He left the hotel around 5 am and at 5:30 I woke up to a low grade temp.   I took some tylenol and went back to bed, only to wake up around 7:30 to a fever of 102.3.  Not good! I immediately got on the phone and called my transplant coordinator.  Couldn't  reach her so I called the on call transplant coordinator.  She called the doctor and he wanted me to come as a direct admit to transplant floor.   So we got my bags and out the door to the hospital.  I was seen by the team that afternoon and evening.  They did a scope and biopsy to check for rejection and blood cultures along with more bloodwork to check on things.  That evening they came back and it was decided with me being on an immunosuppressant and weakened immune system that my central line must be pulled.  No waiting on it either, with the Dr's still in there deciding orders, a nurse had 2 IV's in my left arm and they getting ready to pull the line...at the bedside.  Not my cup of tea people.  I don't really wanna know when one of those are being placed in me or being pulled.  Sorry, but this girls been through enough!  Anyways, it was taken out and done.  I continued to shake, fever, and chill the next few days.  I couldn't think much, talk, walk... just was one pretty sick person.  I guess when you have a temperature of 105.0 all you can do is try to sleep it off between being packed it icepacks.  I was treated with 2 antibiotics for a line infection but when they scoped and biopsied on Tuesday it came back showing mild rejection which they used a big dose of IV steroid so that got me back on coarse.  I had a wonderful roommate that's super sweet! I got to go home Thursday afternoon, but had to be back for labs, biopsy, scope and doctor's appointment the next morning.  I felt like I had a big set back but knew I was doing better than before I came in, just needed to get my strength  back.   It was ruled out that it wasn't a line infection and was mild rejection, but since they treated it with the dose of IV steroid we are good.  My biopsy and scope since then has been fine.   Some have asked if it's rejection do I have to have the intestine taken out?  No, they start with the IV steroids and will step up to some chemo meds, and then there's "bigger guns" as they say, to use.   They have different options to use to keep tweaking it and absolute last resort would be removing it, but very rarely does it get to that point they said.  I'm just very thankful for God bringing me through it and for those of you who knew and prayed.  I am so blessed and glad that God's right by my side in the valleys and the mountains.  He's so good to me and so grateful for I am a MIRACLE!!

I'm so enjoying everyday!  The little things like going on walks with Shane and holding his hand.  Not having him push me in a wheelchair and be behind me but walking side by side and hand in hand.  We've gone to the park and had supper together, we've shared a monte cristo sandwich together.  Yummy!!! I am enjoying trying new foods. I got to add a few fresh fruits to my menu. Peaches and plums with no skin and avacado and mango.   If all is tolerated they said maybe next week they'll add some fresh veggies.   To sink my teeth in some crunchy veggies ...yum!  I told them I'm hungry for a tomato sandwich.  All of you tomato lovers understand that it's the season for them.   I don't want my first tomato to be a store bought one. Ha! For now, I'm enjoying each bite of my "new foods".  It's the simple little things!  By the way, I'm holding everything down and it's not coming back up.  

Once again thank you to all of you who have prayed, called, sent emails, cards, and monetary donations.   Each has been a blessing and helped, whether it's been great or small, it is a blessing.  Especially with us being here and having the house in Princeton.  God is so good and is our provider.  Thank you for all your love and support.  At the beginning of August, we'll have the kids here and I am  very much ready to have them back! Missing them like crazy and can't wait to give them all a HUGE squeeze and sit down and eat with them as a family!  Don't take the little things in life for granted.  

With love-Jamie 

Tuesday, July 7, 2015

One Month

Monday, July 6th was my one month for my transplant.  Time has gone fast in someways!!  I am so thankful that God has given me a speedy recovery!!  I feel so much better.  I am enjoying living!! Being able to walk in a grocery store and not be in a motorized cart or being pushed in a wheelchair.  I'm walking a 1/2 -1 mile a day.  Don't worry, it's not all at once.  

I am enjoying being able to eat more foods!  So far some new things have been enjoying...raviolli with spagetti sauce, frozen cheese pizza, and the best one... 2 kiddie cheeseburgers with really grilled well zuchinni!!  All of that has stayed down and tasted wonderful!!  I still have some things I'm restricted from eating, but that's alright, I'm enjoying what I'm allowed to eat at this point. 

I have been fighting a headache off and on which they feel is from the antirejection mediction.  I was wanting to do the post last week, but my head was hurting too bad to even try. My appointments are all going well.  Still checking my bloodwork on a few things to get adjusted.  I'm doing  IV bags of fluid 1 time a day for 3 hours which helps kep things in balance.  It's not that I'm not eating and drinking enough, it's just a matter of my body adjusting to all of this too.  My scopes and biopsies are all looking good.  They are going to cut back to 1 scope and biopsy per week unless they see the need to change it.  At this point we are still here for 3-6 months to be monitored for any rejection.  If I get home and it happens, I was told it would be a helicopter flight back here... that would be no fun.  I think I'll be patient and wait it out.  

I feel so blessed by the prayers, love, cards, emails, phone calls, and donations!!!  God is so awesome and I give Him the thanks!!  Thank you to all of you of.  Some have told me that they are having issues leaving comments under my blog post, but I chose not to have them posted on there.  If you want to contact me, my email is on the right side.:) I can't thank you all for the many prayers!  We serve a Great and Mighty God!!!  

There's some little people in my life I'm really missing... My kids!!  It's been a month and as time goes by it doesn't get easier!  We are hopping to get them back here the first week of August.  It has sure been different walking past their empty room, hearing giggling going on or someone saying, "Mom would you tell..."  Big bear hugs from a lil man, sweet kisses on my cheeks from from sweet girls.  We facetime, talk on the phone and send pictures back and forth.  I am so proud of them! They have had to go thru alot and are doing well.  We explained that it won't be long before they ae back here with us and will miss being in Princeton, so enjoy the time you have there now.  In the meantime, we'll get a few more date nights in before the kiddos come back.  Thank you for continuing to keep my family and I in prayer.  I'll try to keep this updated :)

To God be all the glory
With Love and many Thanks-
Jamie                                                                                                                        

Tuesday, June 23, 2015

The transplant Journey....

On June 5, 2015 at 4pm,  I was offically listed nation wide.   What exciting news to hear!  I was told to leave my phone on at all times so that they could get ahold of me when needed.  We were moving around the hotel slowly Saturday June 6 and at 10:30 am...my phone rings.  I looked at Shane and told him it's a Cleveland number.  When I answered it I was excpecting them to say congratulations on being listed and run over leaving my phone on..etc, but that's not the way it went.  She said it looks like we have a match for you. The intestinal transplant Dr's have  looked over it all to this point and it looks like this is it.... could you be here by noon?  YES!  She closed by reminding me that it could be a dry run. It's a 50/50 chance till the team looks at the donors organs from inside.  We were so excited and moving quickly.  Thankfully, my bags were totally packed I just needed to get myself ready.  

I wasn't even on the list 24 hours and already had a phone call! Those 2 days were already the start of many miracles to come.  I was so excited along with all my family and friends!  Yet as I talked I reminded people not just to pray for me, but my donors family.  Someone was heatbroke, grieving, hurting, and having the worst day of their life. 

We made it to the hospital by noon and went to registration.  Afterwards we headed up to G101, the transplant floor.  By the time we got in the room and went through the admitting questions we did pre-op stuff so that when the time came I would be set and ready to go, it was already 4pm and the nurse came in and said that around 7pm they would be taking me down. I asked her if it was a for sure thing and she said it was still a 50/50 chance till they took me into OR.  By 8 pm, transport came to take me.  We said prayers and gave hugs and then Shane and the kids followed me to a certain part of the OR, they were allowed to scrub and gown up and wait with me, but we thought it was best to part there.  I was placed right outside my OR room.  There, one of the surgeons sat a few minutes with me, then we did an anesthetic huddle.  The surgeon was moving things along saying we needed to get in there and get started.  I was in the hall for maybe 10 minutes tops then being put in the OR room.  I asked to pray before they began getting things togther.  The surgeon knew I wanted to and promised me we would before I went out.  Well, before transfering to the OR table everyone came around me and I prayed.  Once I got transferred over to the operating table, my surgeon said hey we need a time out so she can pray.  Everyone started laughing and said she's already done it!  He spoke up and said, lets do it again.  I prayed God's hand upon every person that would be in the room and to guide the surgeons hands, be with my family, and for the donors family as I know today was a hard day for them.   I asked for all to go well and for a speedy recovery....in Jesus name... everyone ended with AMEN. A few more minutes went by and I was out.  

The surgery took 14 hours. I remember waking up in ICU.  I remember the breathing tube and remember not being able to breathe at one point.  Not a good feeling.  I had all the bells and whistles all going off.  The nurse came and pushed the tube down my throat and that made thngs even worse.  My eyes were big and alarms were going off like crazy, so I knocked my feet against the bed rail to get anyones attention.  My nurse said she was gonna remove the tube and was getting things for it.  Glory halelujiah!!!  She came right back and took it out!!  Ahh, to sleep I went.  I was in and out of sleep.  I remember Shane, my parents, my in-laws, my Pastor's wife and another young lady, and all 3 of my kids coming back at different times. I remember when the kids were seeing me and one started crying.  I took my hand and made a u shaped smile and held it up to her face.  She giggled which was music to my ears.   Lots of noise in ICU so it's hard to get true rest.  

By Monday, they moved me up to the transplant floor.  Each new day had a miracle added to it.  By Tuesday, I had a rough day.  They said that going through something that big I would have good days and bad.  So thankful the good days out-weighed the bad though.  By Tuesday afternon, our families along with our Pastor and Wife decided it would be best to head home.  That was hard because it meant kids were going back to Illinois and it would be a long long bit before seeing them again.    

I know I'm gonna miss putting stuff in here, but I wanna move ahead a few days.. by Friday evening I was moved to the best room there!  The room had 2 full sets of windows along the 2 walls and  you could watch helicopters flying right in fornt of my window.  Bigger room and better view! At night time it was gorgeous!   By Saturday, I was able to eat clear foods.  No NG tube down my nose, no GTube in stomach to drain it right out and I didn't throw up.  It was so yummy!!!! By Sunday, when the surgeon came in and said that my jackson pratt drain tubes in my abdomen were showing I had a chylous leak.  I was able to stay on clear liquids that day, and was doing wonderful.  By Monday when the team did rounds, they said they would advance my diet to a soft fat free diet. Thank you, Lord!!  I was brought a turkey sandwich and steamed spinach along with pears.  I took the bread off cause I didn't want to to get full on the bread.  We Facetimed the kids and we were crying tears of joy!  6 years with no food and able to eat a few bites and it was so yummy!  That nite I had a grilled chicken breast with green beans and a bite of angel food with a few peach bites!!  Again...tears of joy!!  

I am enjoying  eating and easing into it.  I'm doing 6 small meals a day and I've only gotten sick 1 time.  Sometimes a little nauseated but I take meds for it only as needed.  I have been doing so well, it was decided I could be discharged to the hotel. Usually patients are in for an intestinal transplant for about a month.  I am the 2 patient to have been disharged this early. I am off TPN and just doing one IV bag for hydration daily. We made it to the hotel Friday, and everythings going great!  We still will be here 3-6 months post transplant so they can keep an eye for signs of rejection and infection. God has done miracle after miracle daily for me and it's been so amazing.  I feel better post transplant now, then  I did back a month ago. 

I am so thankful to GOD, to Him be all the glory for all that he has done!  Thank you to each of you for all of your prayers!!!  At this time my Mondays and Thursdays consist of labs at 7 am, a scope and biopsy to make sure all is well since transplant and then a follow up visit with my post transplant coordinator, dietary/nutrionist and seeing one of the Dr's on the team.  

I am so greatful at how well my recovery is going!  God is so good and wonderful!!!! I want to give Him the praise and thank HIM! Thank you to all of you for all the prayers, calls, emails, cards, financial blessings, love, and support.  Continue to please keep me in your prayers.   We serve an Awesome God and I stand in amazement of His goodness!

Love- Jamie


















Wednesday, June 10, 2015

Update

Jamie was discharged from ICU on Monday afternoon and had a bit of trouble caused by the transport and the rough ride and bed transfer. 

Tuesday was a rough day for her, but those are to be expected. 

Today, though, has been a great day! Intestines are starting to liven up and the doc gave the okay for her first Popsicle! A couple walks to the hallway and about and hour and a half sitting in a chair. 

Thanks you, Lord!

Sunday, June 7, 2015

It's a success!!

This is Shane, again. Jamie went in for surgery at 10:30 last night and the surgeon called at 7:30 this morning to let us know that the transplant was a success. They're getting her set up in ICU right now and we're waiting to pay a visit shortly. 

Saturday, June 6, 2015

The call!

This is Shane bringing the good news! At 10:30 this morning, Jamie received the phone call that we were waiting for, but certainly not what we were expecting so soon. Cleveland Clinic had a match and requested that she be checked in before noon. We made the drive and went through all of the pre-op procedure and finally went down to OR at 8:30 tonight. Surgery started at 10:30 and things are going good. Thanks for all the prayers and support.