On our way HOME:)

We made it to Cleveland for my doctor's appointment.  It went well.  He is very pleased with the weight gain from prayers and TPN. They are going to change the TPN again to have more calories in it so I can gain more weight.:)  He said I need to be at 125 to 130 to have the smart pill test.  For now the intestinal transplant is on the very back burner and would be the very last option.  He said even though I look good, he can tell I am not up to par with my energy.  Next time he would like to see me walking from the lobby to his office.  It just still doesn't take much to wear me out and exhaust me.  I have been doing some excercises and he wants me to continue doing those to build up muscle also.  The J-tube is still leaking like crazy.  The area is still not closed up so he wants me to follow up with the GI doctor and have a small J tube put in and once it starts to close up around the tube go to a smaller tube and keep going down in size till it closes off.

Good news, I got the cream that I had left there on my bedside from January.  They threw that one away and I couldn't get another one.   No one knew the name of the "special" paste.  I got a script from him while I was there today.  The cream seemed to help back in January around the J-tube from the drainage I had around it at the time.  You won't believe the name of the paste...CC Paste.   How original :) ha ( Cleveland Clinic).   I have applied it already several times but it's not staying on too well with the drainage.   All I can say is that the j-tube drainage burns and causes terrible pain. The skin is red, irritated, and raw from the drainage which is bile eating away at my skin.  Even if it relieves the pain a bit for a couple minutes, it's worth it.  I have a follow up appointment again in 3 months.  Thankful for a good report and for the progress being made:)  To God be all the glory!! Thank you for all your prayers!!

We decided after the appointment to head back to Sturgis, Michigan for the night.  We drove in and out of rain through out the way there.  Can anyone guess where we ate supper? HMMMM....of course-The Blue Gate Restaurant in Shipshewana.  I got me some mashed taters.  :) Yummmy!  I couldn't finish them so I got a to go container so I can have them for supper again tomorrow night, too.  Thankful for a nice comfy hotel for the night and praying for some wonderful rest tonight.

When I talked to the kiddos tonight they were all excited for us to be coming home.  I was so glad to be able to tell them that we would be home tomorrow.  They all were having one of my Italian Ice's tonight.  Can't wait to get home and snuggle with them and give them all big squeeze's.:)  We'll even get to see Kelsey off on Wednesday for her first trip on with the youth. :)

One last thing- when we woke up this morning at the hotel- outside our window was the big Oscar Meyer WienerMobile.  Pretty neat!!!:)  Shane took pictures for the kids to see.  Would have loved to have gone inside of it!  The receptionist at the hotel here said that a lot of people were pulling off the interstate just to take pictures of it since early this morning.  It was the talk of the hotel.:)   Wonder what the kids would have done if we pulled up at home in the driveway in that! Ha!  Matthew has a hot wheel that is a replica of it.

Thank you for all your prayers, love and the emails of encouragement.  God is great and greatly to be praised!!

Love-Jamie

Getting Packed Up

I am preparing for my doctor appointment in Cleveland.  My mother-in-law is in town to help out with kiddos while we are away. I almost have my things together.  Just need to put them all in the suitcase.   We are planning on leaving when we get home from Sunday School tomorrow.:)  We'll stay the night in Stergis, Michigan then drive the rest of the way on Monday.  My appointment is early afternoon so I'll update the blog in the evening sometime letting you know what the plan of action is.

  I had blood work done on Friday and it showed that my count is a bit down.  It has come up since the 2 units of blood last week, but I'm feeling pretty fatigued, at times like I could pass out, racing heart, and the list goes on.  The hematologist wanted me to get 2 units of blood since I would be going to Cleveland.  My nurse couldn't believe how pale I looked today as she was hooking me up for my blood.  I can already tell a difference after just 1 so watch out- I just might feel like running home.:) Just teasing:)  So thankful I got this before leaving though.  Now I can feel half way descent for the BIG trip.  I did break out in some hives and severe itching!!!  YIKES!  Had prayers, 2 Benadryl and  Solu Medrol  thru the IV.  Needless to say, I am one tired patient!  I was there from 10:15 am-6:30 pm.   Glad it is done though.  Now for some more rest.:)

Talking about trips, Kelsey is almost packed and ready for her trip for the Youth Conference.  She doesn't turn 12 till March 30th, but since it's not too far off they are letting her go.  The girl is super excited!!! She is looking forward to having a great time.  Also a time in her life of drawing closer to God.  I know she has already been praying about the conference and we have also.  I am excited for her, yet a place in my heart aches to have my baby growing up so fast.  What a beautiful young lady she is becoming, and it makes this Mama's heart so proud of her! (And my other two:))

The two younger ones are having a hard time with Big sister leaving and Mom and Dad being gone also.  Poor Kailey bug is having a rough time not going with us.  She is wanting to go along with us this time since we took them back in January when I got admitted.  She thinks that I'll be admitted again.:(  With tears falling down her face she said, "Mom,  if they admit you will you save a spot for me in your bed?" Awe..tears n sniffs for Mom! Sometimes it feels like your heart is being ripped out!  Precious Kids!!!:)  I am one blessed Mama!  Thank you, Lord!!

I'll keep in touch and update the blog.  Thank you for all your prayers, emails, and love.  God is so good.  I have so much to praise Him for!!!! Praying that you are having a wonderful weekend.  Gonna enjoy an evening with my family and get some snuggle time in.

Love-
Jamie

J tube out and 2 units of blood

I had a busy Monday for sure.  I woke up, got ready, and did my blood work. From there we headed to Moline to have the GI doctor to look at the J-tube.   He said it didn't look like it was infected but since I was  fasting that morning he would do an endoscopy and check it out inside.  If all looked clear when he got in there then he would pull it if he couldn't find anything wrong.  He went in and all looked okay so he pulled it. When I woke up while still in the procedure room I asked the nurse if it had been pulled because I could tell with the pain being gone from inside.  The outside part is oozing gastric content due to the hole being there.  They said it takes a couple days to close up.

I got home and my heart started racing like a galloping horse and with it came a low grade fever.  I was able to sleep off and on.  Shane had went to the church for a bit.  Around 7:15 the kids came in our room and sat with blankets wrapped around them.  I was going to read a Bible Story to them, but Kelsey spoke and said I didn't need to be doing that and that she would read to them.  I let her and by page 8 I caught myself drifting in and out of sleep.  When she finished reading she told them to take my hand and they all prayed for me and went upstairs to brush their teeth and go to bed.  I woke up a little later and not sure if I had dreamed of that or did it really happen considering all the meds and me being exhausted.  I had Kelsey come downstairs and asked if it had happened like I thought.  She said yes and my heart melted.  So neat that my kids know how to pray on their own without me even saying anything.  My how they are growing up.:)

Today I am getting 2 units of blood today due to my blood work being low.  My hemaglobin dropped to 7.5 and the doctor wanted me to get 2 units infused.  I have been here since 9:10 and think I'll be done around 3:30. It must be the beautiful weather here causing me to be tired.  The wind is blowing, the snow and ice are falling.  Kids got out at 1 pm today.  Would be alright with  this Mama if we didn't have school tomorrow.:)

Thanks for your prayers
Jamie

Enjoying life:)

We had a wonderful weekend.  I hope you all did also. :)   We had a relaxing time Friday night with some sweet friends.  On Saturday, we went to the Valentine Banquet at church, and yesterday was a wonderful day of services in church.  The banquet was beautifully decorated by our awesome youth group.  They did a great job serving too!

I can't help but  stand in awe of God's goodness.  I am one very blessed person.  I don't want to take advantage of any day that God has given to me.  I want to give it my very best, for He deserves it.  I want to be a blessing to all that I am around.  He is so worthy of all the glory and the praise, whether I get my miracle or not.   I woke up this  morning with the song I stand in awe of the one who made the mountains, I stand in awe of the one who calms the sea and I'm amazed that the Lord of all creation is the one who longs for me , longs for me.  Thanks for those who keep emailing me and encouraging me.  I know I'm not walking this alone but first of all God is with me, and then I have wonderful people like you praying for me.  I have a friend who told me that she has a friend praying for me.  It just humbles me that people who don't even know me, never met me, yet are willing to hold me up in prayer.  I am forever grateful.  Thank you for all the prayers, for that is what has brought me thus far and will continue to carry me through.

Can't help but love and brag on my sweet kiddos.  They have school off today so we are cleaning and they have been extra good.  No one is arguing, fighting, crying and the list could go on.:)  Everyone is working
together and being extra good-no I did not give them a reward to bribe them to be like this.  Make my heart burst!:)  There is something special about the kids and I love them to pieces!  How they have blessed my life!    I think I need to fix them a special sundae and let them know how proud I am of them and their hard work! Matthew said to me last night in church service as he sat next to me and held my hand - "Mom, don't worry, your not getting old just cuz your veins in your hand are showing -it's just cuz your thin!"  LOL!  They melt this Mama's heart.

Not one Dr appt this week!  :) Yea!  Yipppee!  Just had to do blood work for the hematologist and that's it.The nurse did call and said that my hemaglobin dropped again even more so they said I am able to get some units of blood this week if I want to help boost me.  I am choosing to wait till next Monday and praying it goes up before then, otherwise we will be transfusing next week. They will check the blood again Monday, but if I feel worse or change my mind they told me to just call and they'll set me up for the units of blood.  I can't urge you enough that if you are healthy and able to donate a pint of blood now and then to do it.:)  1 unit I believe saves at least 3 lives. I use to donate blood and plasma back along time ago.  What a rewarding feeling and  doesn't take too much time to do.

Please keep a friend of mine with gastroparesis in prayer this week as as she goes to get her pacemaker placed.  I am praying that it works for her and she has good results from it.  THANKS!!!  I appreciate it and I know she will be appreciative of the prayers also!:)

Love and Thank you-
Jamie

Happy Valentine's Day and 2 Follow Up DR. Appt.

Happy Valentine's Day to all of you!  :)  God has blessed me with my high school sweetheart  and this month we celebrated  20 years of being "boyfriend and girlfriend".  I sorta feel "old" saying that!  I count it an honor to be married to my wonderful, awesome, and World's  Greatest Husband and Best Friend! :)    

Tonight I was priveleged to make supper for my family.  I set the table all up for Valentine's Day making it special and pretty.  I used my Great Grandmother's china!  We only use it for special occasions.  I made Steak and then used a Chinese stirfry and added it with the Steak.  I also had Spring egg rolls and wontons.  Shane and the Kids enjoyed it.  To top it all off, I had a super duper friend who made apple crisp for dessert with ice cream and caramel syrup drizzled over it all.   Just the smell alone was YUMMY!   I asked to have the honor in prayer tonight and with tears in my eyes thanked God for the beautiful family he has graciously blessed me with.  I was able to have a bit of broth from some wonton soup from a Chinese Restaurant uptown here.  I also had an Italian ice while they had their dessert.:) What a wonderful time together we had.  Thank you Lord for all your blessings upon our family!!   

Dr appt's this week-  I had one with the Moline surgeon that put my Hickman line in last week.  It was a follow up to make sure all is well- which yes they are!:)  Yeah!  I go back in 5 weeks to get the stitches out.  Thankful all looks good though!  Today I had an appt with the blood Dr. to follow up with the bone marrow biopsy.  It didn't show anything serious, but did show that my bone marrow is scattered and having a hard time trying to stay produced.  He said for now that we will keep an  eye on some extra special blood work and then follow up in 5 weeks.  Also if it shows that it is low then he can do a procrit shot I believe is what it is called.  He also said for now that the anemia is caused by chronic condition.  Basically from the gastroparesis.    Thank you for all your prayers and thankful that it's nothing serious.   Thank You Lord!:)

We have our Valentine's banquet for church Saturday and my in home care nurse coming to the house too.  Wishing all of you a wonderful weekend!  Thanks for your encouraging emails,cards, and most of all prayers!

Love-Jamie 

Surgery went well :)

I thank all of you who kept me in prayer for the hickman catheter surgery yesterday.  All went well and is back to working again. :)

I am sorry for not updating last nite but, I was resting the whole evening.  I slept in the love seat recliner because we were extra careful not to get bumped in the night.  I made it through the night, fighting pain and nausea, and woke up this morning sick.  I ended up having some bile go down the wrong pipe, and a chest x-ray this afternoon showed I have a small amount of pneumonia on the right side.  I was put on an antibiotic to help stop it.

Thank you so much for the emails and texts I have received, but most of all your prayers!  That  is what helps me get through each day.

Tomorrow's Surgery

Thankful that the weekend was not as crazy as the week was!:)  I was able to enjoy both services on Sunday at church with a much needed rest in between.

I went to my consult today and we are leaving the house at 5:45 am to be there by 7 am.  They will do the surgery to switch out the two hickman lines at 8:30 am.

I want thank you so much for all your prayers and ask once again for you to go before the Lord -that He would guide the surgeons hands and that all goes well with no complications.  So thankful to know that God cares and answers our prayers.

Love- Jamie