An awaited update:)

It's been a crazy busy summer to say the least!! SLOW DOWN SUMMER!  School supplies are on the shelves and ready to go...but they can wait a bit longer please-I'm not ready to end our Summer. There is still a trip to Texas before school starts and some things to do with the kiddos.  Time seems to just be flying by a bit too quick!  We're sure having fun though!:)

The hickman line is in place and healing well.:)  It was a rough day! The first plan was set and ready and when the surgeon came in and discovered that the PICC had been changed.  It was in the left arm instead of right-His plan was to place the hickman on the left to give the right side a break after having it removed from there.  Since we were using the PICC for the IV meds to help knock me out for the surgery we had to do an IV in my hand.  The nurse got it in and another plan changed-instead of knocking me out completely it was decided to use partial sedation to where I would not be completely awake.  I was a bit hesitant just due to times past waking up through the procedures. Well...I was taken back to surgery, remember getting the meds and was told I was in a good sleep.  At some point I started hitting with my hand that had the IV in it and when they got my hand the IV got messed up.  I don't remember that-I do vividly recall awakening to pain on my left chest where the Dr was working and countless pokes and sticks for the IV.  NOT FUN!  I had a sweet nurse at my head, wiping my tears that were streaming down my face, trying to keep me calm as I could feel the Dr stitching me.  They were not able to give me any meds due to no IV.  They had tried 4-5 attempts and my veins were not cooperating so..no IV was placed.   I was just happy to come home and crawl in my bed and try to sleep off the pain and be LEFT ALONE.:)   It wasn't anyone's fault, but I think it's just best to be all the way out from now on.  I have alot of allergies to meds and don't want any more.  Thankful that God's hand was on me thru the surgery and all is good and well with the line.:)

I had an appointment with the hematologist yesterday.  I have a low hemaglobin so I recieved 2 units of blood after my appointment.  The plan is to get iron infusions for the next 2 weeks and see her in 4 weeks.  If  the levels are not where she would like them, we'll discuss doing another bone marrow biopsy again.  

Trying to stay cool in this heat.   I love the heat but my body doesn't handle it too well.  With Shane doing car detailing I've been trying to keep the house stocked with powerade and gatorade to drink.  The kids haven't been out too long with as hot as it's been.  They did make it to the library for the Summer Reading Program activites.  The helicopter came in last Friday and they loved watching it come in and leave.  We've enjoyed and are thankful for the programs they offer the kids.

Wishing you all a wonderful weekend!  I can't express my gratitude for all your prayers!  Thank you!

Love-
Jamie

Clearance for surgery :)

All is well for the Hickman to be placed back into the chest tomorrow.  I have to be there at 7:30 in the morning and go in at 9:30 for the Leonard Hickman to be placed.  Antibiotic is done and no infection in the bloodstream.  Yea!!!  I am ready to have this PICC line out of the arm and get back to some normalcy of things.  It just must be where it is located that it is so tender.  I can't complain too much cuz things could be much worse.  I think my arms and hands have had enough things done to them the past 4 weeks between 2 PICC lines and too many IV's.  Thankful though that I still have access to them and don't have to use the jugular vein.  

God is so good and I am thankful for the Dr's and nurses that He has placed before me.  I pray for them daily that God would guide them and help them.  

Getting ready to call it a night since the morning will come early for me.  For me, 5:30  is when I'm getting into a good sleep.  Please keep me in prayer tomorrow.  I pray that I can be a blessing to someone thru all of this.  God has blessed me beyond measure!  I'll try to update the blog on Thursday.  Hope you all have a wonderful Wednesday.

Love-

Jamie

We made it HOME:)

Sorry for the lack of updates.  It's so good to be back home!  We made it in on Saturday afternoon safe and sound!  Thankful for a safe trip there and back.  We ran into traffic on the way home.  In Peru, there was a single vehicle accident, but thankful for God's protecting hand!!

Well.. where to begin for Friday?  We got up at 6:30am, after going to bed after 1am from the ER.:)  Got ready and packed.  Shane and Matthew loaded the car up and the girls and I headed down to the breakfast area.  They ate, then we all headed out for the doctor appointment with the GI doctor.  He was concerned and seemed for certain that I was facing a blood clot in the right arm of where the PICC line was.  I gave him a hug and said let's just take this step by step and that we'd get thru this.  So, most of the appointment was rushed to get me over to another area of the campus where they were able to do a vascular ultrasound.  Once we were finished with that, we rushed back over to the office where my appointment was to get the results and see what the next step would be.  They came out and said it was cleared for no clot.  That was a good thing!!!!  Thank you, Lord!!:)

They were able to get me scheduled with the PICC team  to change out the PICC line since this one was obviously leaking.  Bad news was...they couldn't get me in until 3 pm.

We left the GI office around noon, found me some chicken broth and Shane and the kids had McDonald's for lunch.  We sat in the main hospital lobby waiting area and there was a young doctor at the piano playing.  What an enjoyment it was!  We watched a lot of people come and go.

The Hematologist I saw Thursday came up to me and complimented us on how beautiful our family is!  He also said he was waiting on a bit more of the blood work to come thru, but what he had back didn't show anything significant.  He said to call his office this week and go over it all.

Around 2:30, we headed to the Dialysis area because that was the only procedure room available for them to use for the PICC insertion.  It took about an hour to get it all done, then we had to race over to the Endoscopy area.  The GI doctor said no more Vancomyacin with the reaction I had in the ER.  He said the next time I would have it would be worse so no more vanco for this girl.  He wanted me to try Cubicin before leaving and be monitored for any reactions.  The Endoscopy area was able to keep me for that, so we got there and was ushered back  to a bed only to find out they were waiting for the anitbiotic to get there from another pharmacy that was not theirs.:) :)    We waited patiently and they allowed Shane and the kids to come back with me since it was the end of their day.  About 15 minutes or so passed and my nurse came towards me carrying a big box saying, "we got it!"  My, my...it contained an IV pole, 2 small IV bags of my antibiotics, a dressing change kit, lots of alcohol wipes, extension set to make my PICC line to where I can reach it with both hands, Saline flushes, and a styrofoam cooler.  She hooks me up to my antibiotic then says this is for you to take home.  Oh joy, we have the Camry packed with luggage, clothes, insulated bag coolers with TPN, more clothes, food, the back is packed!!! Not to include, the inside with 2 adults and 3 kiddos.   My sweet honey was able to make room and get it all in.

Just as I had finished up the meds through the PICC line, my GI doctor came back in to say goodbye.  He didn't need to do that nor we expecting to see him again , but by him coming thru before leaving allowed both Shane and I to finish a few questions we had for him.  We got to the car sometime well after 5.

We stopped for supper and a few breaks and made it to the hotel in Elkhart, IN late that night.   We slept in a bit Saturday before driving in rain the whole way home.  Thankful for safe trip there and home!

Big shout out to my sweet Husband and 3 precious kids!!  Considering all the running around the hospital buildings they had to do running here there and everywhere.  Also all the sitting they had to endure waiting...patiently.   They did an AWESOME job!!!!!   The kids did really good for all the walking they did and kept up with us the whole time.   They enjoyed all the passages they got to go thru, whether it was a sky walk or  a tunnel,  they enjoyed it.  Thankful for my family that God has blessed me with and so glad to be home and be with them.

Love you and thank you for all your prayers.

-Jamie

Good Day With The Hematologist Dr.

Quick, but short update.  All went good at the appointment.  Had labs done and he is going to talk with the GI doctor regarding some suggestions.  Very nice doctor and staff.  Actually, everyone here has been so nice.:)  That makes it better with not knowing anyone.  I am having some problems with the PICC line though.  Long story short-we ended up in the ER.  I am back at the hotel and so glad I didn't have to stay over!!  We will have it addressed with the PICC team, after the GI appointment tomorrow morning.  I will do a better update hopefully tomorrow, but for now it off to sleep for me.

Luv Ya-
Jamie:)

We've arrived to Cleveland OH

We have arrived safe and sound to Cleveland, Ohio.  :)  No melt downs or problems on the way here with 3 kids in the back seat.:)  It wasn't too bad of a ride driving straight thru, but these bones are ready for BED. :)  Thankful for an uneventful trip here and for God's mighty hand of protection upon us as we traveled.

My appointment with the Hematologist is at 9 in the morning.  I was thinking it was 8, but grateful that it is an hour later.  It will give us a little extra time to get ready, eat breakfast, and be on our way to the appointment.

I'll try to update the blog tomorrow evening sometime and give a heads up on how things are going.  For now, it's time to get some rest for a BIG day tomorrow.

Luv ya-
Jamie

Quick Update

Today I had my hematologist appointment.  I am still below normal on my vitamin B12,but my hemaglobin is holding steady.  Instead of doing a weekly injection of the vitamin B12, they are changing it to daily injections.  I have bloodwork the next two Monday's to make sure that my hemaglobin is doing well and then in 2 weeks I see her again.  It was a good appointment and was able to make sure all is squared away for Cleveland next week.  After my appointment was done I had another iron infusion done in the treatment room.  It was crazy busy in there today.  I walk away from that room always with a thankful heart knowing things could be MUCH worse. I AM BLESSED!!  May God touch each of those who are having treatments done.  I don't know many that are in getting the treatments, but there are a few I do know and keep them in my prayers daily.

The kids are enjoying their summer as it's flying by!!! Summer, slow down please!!!!  Hard to believe in 2 weeks it'll be July!!  YIKES!  I still have lots of fun plans for the kids that I haven't done!  They are enjoying their weekly library trip, then going to the park to play and eat lunch. :)  Next week the Library has their Summer Reading program for the kids.  They always look forward to going.

Have to share this moment with you...ENJOY:)
ME:  Matthew, what are you doing? (As he is making a lot of noise in the kitchen)
MATTHEW: I'm getting a drink, Mom.  I don't want to get dehydrated!!
ME:  Matthew, do you know what dehydrated means?
MATTHEW: No, I just know it's something serious!
ME: It means your body is very thirsty and needs fluid very badly.
MATTHEW: See, I told you, Mom. (Kitchen door slams and out the door to play again)

Gotta love it!:)

Have a great weekend everyone!  Make sure to take time to enjoy the simple things! :)
Luv ya-Jamie

Beyond 100 Post

I am a bit behind on my updates.  I did get to come home Saturday evening. :)  I was able to get a double lumen power PICC line inserted in my upper arm.  It beats having to have an IV stick.  My poor arms are still sporting the bruises and holes from being poked.  I am already missing my central line.  I am grateful to be able to have the PICC in, but it is sore.

It is so good to be home!!!  To be able to get snuggles anytime, to hear the kids laughing, giggling, and arguing (oh wait, not my kids-lol). To enjoy sitting in the recliner in the living room and hear the birds singing away, the cars zooming along, the little fan in our room softly humming.  To have my honey right next to me in bed and to get a goodnight kiss before falling asleep.  Not being woke to my vitals being checked, the leg pumps beeping, the IV sounding it's alarm due to air in the line, empty IV bag, or an occlusion in the line.   It's nice when the time is needed and your sick to be taken care of...but boy does it feel WONDERFUL to be home!!

The staff was all so caring during my stay.  You can tell they really do care and enjoy what they do, it shows.  I am so glad God places special people like that in your life.  I have so much to be thankful for and so glad that this is once again behind me.  Thanking God  for His hand upon me and for bringing me through.  Enjoying being in my home sweet home between bloodwork and Dr's appointments and getting ready to go to Cleveland next Wednesday.

Thank you for all your prayers!
Love-Jamie

An Update From Peds Room 351

What a beautiful sunshiny day from room 351. I was thinking that today I'd be discharged home...but my blood cultures are still showing positive for staph. So...we sit and wait and PRAY,PRAY, PRAY that the infection leave and tomorrow they will be negative. So thankful for the peace of God that covers us. No tears were shed, I'll just keep trusting in Him, for He knows what's best for me. I am missing home, being in my sweet bed and hearing the precious kiddos laughing and playing and having my sweet Honey by my side. But since that can't happen right now you just put a smile on your face and make the best of what it is (and EAT A CHERRY ITALIAN ICE:)



Yesterday was a very special day for us, 8 years ago today I was in the hospital for a MUCH better reason. Mr. Matthew Shane was born. What a handsome young fellar he is! I enjoy watching him play his drums with a hard book and set of drumsticks. Still loves his tractors, bugs, riding bikes, snakes, eating fried PB&J, spiders, scaring his sisters, digging in dirt, snuggling with mom, climbing trees, fishing, legos, ball, donuts and coffee with dad, collecting rocks, loves being outside, loves Jesus and going to church, and just being....Matthew. So thankful God has blessed our lives with Matthew. What a gift from heaven above!

We did a mini birthday party for him here in my room last night. We ordered pizza and had cake and icecream too. The nurses made him a card and signed the back...so sweet. Since I was unable to make the cake, I gave Shane the idea I was thinking and he explained it to Kelsey and she did an awesome job on it! She made a tie-dye cake covered with blue icing as water, crushed vanilla wafers as sand, placed some Swedish fish in the water with twizler pullaparts as the lines and hooks. That was her first time alone to do anything like it and she went to town on it, and did a great job. The nurses got in on some cake too.:) Glad we were able to make the best of it and still make his day special for him.



I am so greatful for all the wonderful staff since I have been here. They have gone the extra mile for not just myself, but for my family and I appreciate that. Even if it meant going to another floor to get a cherry icee:) I am thankful for the "extra" care they give. God is so good. Just taking it a day at a time-we're getting there.:)



Thank you,Thank you for all of your prayers for me. I can't say thank you enough! God is an on time God and my hope is in HIM. As the Brooklyn Tabernacle song goes- He is more than enough...for me. HE is everything I need and my trust is in HIm.:)

Luv ya
Jamie

Update from the Peds unit

I am back reporting to you from room 351 in the peds unit.  All went well, and took the line out with 2 tiny stitches left and some soreness that is trying to settle in.  My mouth is extremely sore from the scope yesterday with me having thrown up while they were doing the procedure. NOT FUN.  Glad to be on the road to recovery though!!  NO fevers, chills, body aches.  THANK YOU,  LORD, for once again bringing me thru all of this.  He is so good to me and as Dave Ramsey says, "better than I deserve".  So glad that the infection did not go to my heart.  My blood count is staying about the same and thankfully has not dropped enough for me to need blood.  I think my system has been thru enough battles just since Sunday.

This evening I feel like my body is starting to finally turn a corner for the good.  I appreciate all your prayers and love. Thank you!!

A tornado had been spotted in the area so we all had to get out of our rooms and take cover in the hallway.  As I said, I am in the peds unit and as I go to sit in the rocker I see 2 others around my age along with about 3 elderly people and some family members sitting in chairs.  I sat and prayed.  There were no children in the peds department! :)  We were there about 30 minutes and then able to go to our rooms.  Just thought I'd share the excitement with you just in case you didn't think that it's not exciting enough around here.
 
Luv-

Jamie

Jamie update

From Shane...

Out of ICU!!  She had a 'TEE' to scope the heart this morning and all results showed no signs of infection. Thank God!  Infectious Disease doc ordered a CT of face, abdomen, and spine to rule out any other possible infection sites. Tomorrow morning, she'll be going down to have her central line pulled. I will update the blog once I know more details. 

Thanks again!

-Shane

Jamie update

From Shane....

Infectious disease doc came in and he has ordered another blood culture and going to do a heart scan/scope to look for infection because the central line is showing signs of staph infection. Possibly going to pull the line. Also has a kidney infection on top of all of that. In ICU for a while yet. 

Thank you for your prayers. 

-Shane

Jamie update

Update by Shane....

After a shower last night, Jamie started feeling shaky and after checking her blood sugar and temp, everything seemed normal. As the night went on though, the fever climbed to over 103 and the body aches became more severe. After updating in home care nursing, she was advised to get to the Emergency Room right away. 

After all of the routine checking in here at the hospital, doctors are as confused as most. No redness or soreness at the central line, no sore throat, no ear aches, .....  Doctors are testing as much as possible and starting antibiotics and will be admitting her to the hospital this afternoon. 

Thanks for all of your feedback and support, bloggers! And thanks be to the Mighty God who knows our every need!

-Shane

On the Home Front

I have arrived back home and I'm in my sweet bed.:)  Ahhh, there is no place like your own bed.  I am fueled up with 4 pints of blood.  Watch out, cuz here I come!  Oh, how I wish it were all that easy.  :)

I was admitted as observation/outpatient to get the 4 units.  I was able to have a room with a view of the river and watch the sun go down.  BEAUTIFUL!!  THANK YOU, LORD!!  I think around 9 last night was the start of the first unit and around 1 this afternoon I was ending my last unit.  In between each unit they gave me lasix to help with the fluid control.  I should sleep like a baby tonight since they had to do vitals every 15 minutes for the first hour of each unit I received then every hour till the bag was gone, then get lasix, and begin the process over.:)   I had benadryl, solu medrol, and tylenol for premeds before getting the blood, since I have reacted to getting blood in the past.  I also had phenergan IV for the nausea.  Between those meds that was enough to knock me out for the night, but with all the action I had to catch winks when I could.  I napped off and on today and now just about ready to go to bed.

I have to get labs done sometime tomorrow and then on Thursday follow up with the Nurse Practitioner for the Hemotologist. Still a busy week ahead....all the more reason to get some good rest TODAY!!

So greatful that I serve a Prayer Answering God!  There is nothing that is too big for HIM!  Thank you for your prayers, love, and emails!:)

Luv ya-

Jamie
++++

More blood...

Back in the hospital this evening for 4 more units of blood. Went in this morning for blood tests and blood levels were back down to a 5! 

I'll be sure to update more once I'm able. 

Thank you for your prayers! God's good!

Getting 2 units of blood

I had my Dr appointment with the Nurse Practioner today. I went around 10:30 this morning and did my labs. My appointment was at 2:30 this afternoon and couldn't come quick enough for me. She is at a loss for what to do and why things are going the way they are. My hemaglobin was 5.5 so she had me ready to go to outpatient to receive 2 units before I left the office. She wants me to come back tomorrow morning and have the level checked again. If it is still low they will do 2 more units of blood. I've slept alot while here, just due to being worn out. I have gotten some much needed rest. Just trying to take it super easy due to the shortness of breath and my pulse finally lowering down to the 100-120's. Thank you for the prayers. I'll try to update tomorrow or sometime this weekend.

Luv ya and nite-
Jamie

An Extra Special Day:)

Today was extra special for me!  I am so thankful to have another year of being blessed.:)  So thankful to God for another year to be here and celebrate another year.  Each day is truly a gift from God and I want to always live each day to the fullest.  I have had several very close calls, but God has brought though  each one.

Each day is a blessing and today is extra special with it being my 38th birthday. I was blessed with visits, emails, texts, and a surprise of  wonderful friends at Culvers for some ice cream.  Tried going thru the drive thru, but my sweet husband had something else planned out.  Little by little, friends starting coming in.  What a way to end my special day!  I was showered with blessings and love from my family and precious friends.  I feel beyond blessed.

I had blood work today and spent most of the day in bed due to my blood being a little low and the gastroparesis effects. I am holding in the 9's for my hemaglobin , but can drop very quickly.  On Thursday, I am having another blood draw to make sure it hasn't dropped.  With  the way I feel, it feels like it's lower.  My body responds the same right now if I am at a 9 or a 6.  I still have the rapid pulse like a horse, dizziness, and shortness of breath.  When I go for my appointment they are going to try a new iron infusion on me, so I'll be there for a bit.  I felt terrible on the other iron infusion, but anything is worth a try.  :)

I did change the background again on the blog:)  Was ready for something summery and fun. Hope you all have a great week.  Thank you most- for all your prayers!!

Luv-Jamie

I AM HOME :)

Sorry for leaving you guys hanging wondering if I was discharged from the hospital. I did get the clearance to go home. The Infectious Disease Dr. said if cultures were ok and not growing anything that I could go off both the IV antibiotics. My hemaglobin did drop Saturday morning from 9.7 to 9.3 or something close to that. I am to follow up with my hematologist on Thursday. She will not be in the office on Thursday, so I will see her Nurse Practioner. I have met her in passing and she seems like she's great. I have to do blood work for them on Tuesday. That way they have it for Thursday's visit. I am so thankful it wasn't as bad as it could have been. I am still getting tired out easily. The antibiotics can do that along with my blood still being low. Step by step and day by day God will bring me through!



We were supposed to have left Sunday to head to Texas, to see my "In-Loves" Obviously we are not going with all that has happened the past few days. I am very thankful that it happened then, rather than get there and it all happen. The kids were all bummed about it at first. Then we explained that we would not be able to go and do things with me stuck in bed all day long. They all understood and took it well. We all know it's for the best that I wait to be built up a bit stronger.



Normally we attend the Memorial Service in Bureau, and take flowers to all our Grandparents graves. We didn't make it this time. Maybe toward the end of the week or next week we can. I did venture out with Shane and the kids to Menards and Hyvee. He bought some extra plants and Shane is going to spruce up the landscaping. I asked for a huge hanging basket for Mother's Day and my Birthday. It's an overflowing basketfull of purple and white flowers. We clipped the tops of the hanger off and it looks like we planted it like that. We had our own minature cookout. We picked up brats and put them on the George Foreman. Hyvee has some awesome brats. The pineapple brat is the all time favorite at our house. I made a small dish of potato salad and served chips too.


I'm calling it a night in just a little bit. I hear my bed calling my name:)

Luv Ya-
Jamie

Post Number 90 and Out of ICU

I got out of ICU!!! Sorry girls... you are awesome nurses, but there is a little more quietness on the regular floors AND I can see my precious kiddos:) My hemaglobin was 11 something at 9 last night and by 5:30 this morning it was 9 something. Not surprising to me. I walked from ICU to my room. Room 414 is my lodging place at this point in time. I put a request in for a NEW room. You see, the NEW rooms have showers with a bench in the bathroom and the old rooms have a sink and toilet. I have had enough of my share of spit baths:)!! There's just something relaxing about being able to take a shower and have some normalcy to life. :) I have taken a couple naps today.:) I had occupational therapy and physical therapy come and evaluate me. Passed the OT but needed help with some strengthening in PT. They showed me a few exercises to do in the room and walked with me in the hallway.



Shane brought the kids up to see me. Matthew was all excited about his field trip-bowling and getting a strike. Kailey brought a folder she made of memories throughout the school year. Kelsey told me about her day -babysitting with Aunt Chelle. It was fun, hearing about their day and getting hugs and kisses from them. I took a little snooze while they were here and Kelsey was sitting on my bed and held my hand. Precious Memories for this Mama to hold too!



The Infectious Disease Dr. came in this afternoon and said the cultures are coming back clear. If the final report comes back negative tomorrow, he will take me off the 2 IV antibiotics.:) One step closer to HOME. Not sure when I will get to go, but I'm ready. I'm not sure when the plan of discharge will be, but it would be nice to be home for Memorial Day. Guess we'll have to see what tomorrow holds:).



I called and cancelled my appointment with the hematologist yesterday. Today I called and asked about setting up another appointment. She will be out of the office next week, but they want me to see the Nurse Practioner and do blood work on Tuesday or Wednesday.



I am so greatful for God protecting me. HE is so good and I am VERY thankful that this was not a line infection. Thank you for all your prayers, love, and emails!:)

Luv Ya and will try to post an update sometime tomorrow.:)

Another Update From Room 455

We've had a lot of excitement in the past few hours! Today I was finally able to muster up strength to take a bath at the bedside. While I was resting from being wiped out from that, the nurse came in saying that with my blood being so low, my Dr wanted me to see the GI Dr while I was here to have an endoscopy to make sure that I wasn't bleeding in my stomach. I went down around 4:30 and had it done. All looked good. He took 2 biopsies just to be on the safe side. I had just gotten settled in the room and the Infectious Disease Dr. came in and checked me over. He is giving me 2 antibiotics thru the IV for now until the blood cultures come back. Hopefully by tomorrow we will know if they are growing anything. At 8 tonight I finished the 4th unit of blood. I've had some pretty awesome nurses. Some are new and some I have gotten to know and build friendships with. So thankful for God's little and big blessings in life. Hopefully from here things will stable out and be good to go. I'll try to update tomorrow. THANK YOU FOR ALL YOUR PRAYERS!

LUV-JAMIE

Update from ICU

Just a quick update from the ICU room 455. I came in last nite to the ER running a temp of 101.0. I got up to the ICU room about 3:30 in the am. My labs yesterday outpatient showed my hemoglobin was at 6.6 after just receiving 2 blood transfusions on Monday. When I was in the ER they retested it, and it was at 5.7 and dropped even lower this am to 5.4 before starting the first of 4 blood transfusions Yes...4 units of blood today. They started around 5 and right now I'm on my 3rd transfusion. Everyone has been so wonderful here. I had a one time dose of vancomyicin to try to keep things at bay and praying it isn't the start of a line infection. The Infectious Disease Dr will come in sometime this evening and make the decision. I'll try to update this tonight. Just doesn't take much to feel wiped out. Time for a nap!:) Thank you for all your prayers!!

Luv-
Jamie

Long awaited update

Thank you for being patient. I had planned on updating the blog Thursday after my appointment and every time I've gone to start typing I start falling asleep. I am wide awake right now, but won't take much and I'll be out. My hematologist is retiring so I met the new Dr. taking his place. She seems really good and very thorough. She called and talked with my GI Dr. in Cleveland and they both agree that on my visit there at the end of June to see him, I should see a hematologist there as well. Not sure where it will be done, but she would also like for me to have another bone marrow biopsy done. YIKES!! Those hurt and are painful for a good week.:( We do need to find out why I am so low on some of my levels though. I had blood work done today and it was a whopping 6.0. HUMMM- could be the reason I have alot of shortness of breath and dizziness and the list goes on. Thankful that alot of my labs were done today without my having to come back and be redrawn. I was in the ambulatory care unit and got sent down to the second floor to finish the first bag, got Lasix IV, and get my second unit of blood, then let the normal saline run about 45 minutes then HOME!:) I have to get another CBC on Wednesday and see the hematologist again in her office on Thursday. I was supposed to see her on June 6, but she emailed the nurse and moved it up and decided to see me this Thursday again.

Praying for all those who are affected by the tornadoes. May God keep us safe thru this night.

I am still here getting the blood and looks like I will be discharged around 11:30 or so tonight.

I got up to use the restroom and the lights flickered for a moment. I was walking back to the bed and heard the person next door say, oh man, my cable on the TV went out. It was so peaceful and quiet in the hallways. Ahh! It was so calm and quiet for about 10 minutes then back to the chaos of a few TV's going. It's pouring down rain. That can stop any time now so we don't wake up to any water in the basement. Quick update and I'll try to update Thursday night or so. Better shut this down cuz the power is flickering again. Sweet dreams everyone!

Love-
Jamie

I AM BLESSED!!!

Everyday is Mother's Day, but we celebrated Friday thru Sunday.  It began with kids bringing home goodies they made for me on Friday and ended Sunday night with 2 sundaes -one from Dairy Queen and one from Culver's.  I enjoyed a few bites of each and the rest was for the kiddos to enjoy!:)  I am so blessed to have 3 beautiful miracles from God called my children.  I AM BLESSED!!!!  They are my joy and I am so blessed to be called their Mama.  I am proud of each of them!!  They work hard and help me so much around the house.  I love how unique each of them are and stand in awe of all of God's  goodness.  I am appreciative to God for allowing me to raise them and entrusting them to me.  We have dedicated them to Him, and my prayer is that He molds them and uses them anyway He chooses.  Sometimes I feel like it reverse roles and they are taking care of me. :)  I want to do my very best to be the Mama that God has called me to be.  My heart is full and so thankful for another year.  God has given me to be with them.:)  God is so good to me!!! I  AM SO BLESSED!

Thanks to someone out there who gave blood.  I was able to receive 2 units of blood yesterday.  My Hematologist called Thursday and said that my blood was low, so I went Sunday morning and got type and crossed and Monday was able to be given 2 units.  I have an appointment with him this Thursday so we'll see what the next step is. Hope to be able to update the blog on Thursday again.:)  So stay tuned ;)

This laugh is free, so sit back and enjoy...:)  Today was a gorgeous, warm, sunny, day.  One of the kids decided to open up the window to their bedrooms.  No names, but child 1,2,or 3 opened a window to his or her room and it did NOT have a screen on it.  This took place between 5-8 today.   I decide to make my way up to take a RELAXING bath upstairs while my sweet honey took the 3 kiddos on a walk. I notice that a lot of windows are opened upstairs and some flies.  YUCK!  Nothing like a beautiful day and having a FLY swarming around as you get ready to relax for a few minutes.  I check the windows and notice there is no screen on this particular window in one of their bedrooms.  I close it and proceed to the bathroom to make sure there are NO flies.  I didn't find one, so I close the door and take a bit of relaxing bath and go downstairs.  Once my sweet honey came home from the walk, I let him know what had happened and let him talk to children-1,2,and 3 about leaving a window wide open with no screen.  So thankful it wasn't night time and a bat got in.;)   In the meantime, the girls and Matthew are keeping tabs on this giant horsefly.  Yuck-I am not about to try to sleep with this thing flying all around.  So I confine him to my bathroom and slam the door to keep him in with me.  It was him and I and I am ready to duke it out with this Fly Guy.  Round 1 began and I am swatting at it and I get dizzy just watching the crazy feller fly around.  I promise he must have gotten a buzz every time he hit the light bulb.  I am worn out, but not ready to give in.  I make some Karate noises to try to scare him off and in the background can hear the kiddos laughing. Long story short.... I got him.  I just kept hitting him with a towel till I could get him knocked down.  I was tuckered out from getting that little guy!  Matthew came in our bedroom and said, "Mom it's like David and Goliath and he was the giant and you killed him!"  I said, "yeah Matthew, you're right.  I got him, although I will say that little guy gave me a BIG workout!" :) HA!

Night!  God Bless!

Love ya-

Jamie:)

Getting 2 more units of blood!

I had my blood checked yesterday and received a phone call from the hematologist saying that I needed to go and get 2 units transfused Tuesday. My hemaglobin was 6.8. Last Monday it was 6.9, so even with the 2 units of blood, I still dropped. At least I was not crawling to get to the restroom. The nurse said that my body is just adapting to it being so low. I knew Monday when I went to get my blood checked, that it was low, but didn't think of it being that low considering I was able to get around without feeling like I was going to pass out. So here I sit in a hospital bed basking in the sunshine from the hospital room enjoying what I can of this BEAUTIFUL day, as I get my 2 units of blood. I have an appointment with the hematologist on Thursday. We'll see what he has to say. God is so good!! I am so blessed and have so much to be thankful for. Thank you for all your prayers, letters, emails, and love.

Love-
Jamie :)

It's gotta be a better week, right?!

I felt bad Sunday night and Monday morning when I woke up and I knew I had to get my blood checked.  I was due for bloodwork for Cleveland but wasn't due for a CBC to check my hemaglobin and  hematacrit.  I called my hematologist office and left a message with the Dr on call Sunday and he called me right back and said he would call on in for me for Monday to do with the rest of the labs.  With the help of my sweet honey, we got the bloodwork done and back home to bed.  I was very dizzy, weak, headache, seeing spots when up for just a few minutes and felt like passing out. My heart rate was up to 130 several times through out the day.  Well I got a phone call from the nurse saying I was at a critical low and needed to be transfused.  So I went today from 8-5 and received 2 units of blood.  Thank the Lord that with my pre-meds and lots of prayer- I had no reaction to the blood!  I got a bag of benadryl and solu medrol to help before getting the blood and then some tylenol also.  Thank you Lord for it all going well.  I even slept a lot of the time...which I needed.  I know I have said it in the past, but look into your community at when they are doing a blood drive and donate blood if you are able too!!  I can't thank the people enough who have donated blood.  I am O Positive.  I realize not everyone is able to donate, but for those of you who can and are able-please look into helping.  What a way to help someone in need.

I am so thankful to the Lord for his love and strength.  I'm gonna keep praising Him thru the storm.  He is my EVERYTHING.  Amazing he knows what my tomorrow holds and just what I need. So thankful I can keep leaning on Him and know that he bears our every burden.  That nothing is too big for Him.

Matthew wheeled me from my room out to the car.  As we were waiting for Shane to bring the car up he wrapped his arms around me from the back and said Mom, I'll keep you warm.  Awe... melt this Mama's heart.  I sure love my kiddos and my sweet Honey, and thankful to God for all that He has done and is going to do! God is so good to me!!  I am so BLESSED!

Love you and Pray you have a wonderful rest of the week-
Jamie

Where do I begin?!

I am ready to be done with this week and put it behind me. Medically speaking, I am running low grade fevers since I have been off my antibiotic Tuesday afternoon. Of course Tuesday midmorning I had a Dr. appointment with the surgeon and the site looks good! That is a plus but we don't need any other infections brewing, so please pray. I am still a bit sore from surgery but I think I just overdid it on Friday and today.



The reason for overdoing it was....my sweet honey and I awoke to a loud constant buzzing at beautiful 3:30 am Thursday morning. We woke up and realized it was not his alarm. He tells me to check the extension cord on my side of the bed. In the meantime he goes in and brushes his teeth and is gonna get ready for the morning. I check the cords all out on my side of the bed and I say to him that it's not coming from any of my things and it sounds like it's the basement. He goes to the kitchen door and looks down to a water filled basement. LONG story short we are staying here at the house for the first time since Thursday. We had over a foot and a half of sewer water floating around in our basement. ICKY, STINKY, AND ALOT OF WORK!!! That is what the past 2 days have been. We didn't have insurance coverage and what was most valuable to us, money could never replace. I had things sealed in rubbermaids in our storage room. This included about 8 rubbermaids of Christmas all of which were ruined except for one box. Included in the rubbermaids was the kids baby memorabilia-things from the younger two's stay in the NICU, birth certificates with their baby footprints which were the only ones I had, birthday cards, Matthew's first haircut, all of their first tooth they lost.... and the list goes on and on of heartbreak. Things that can never be replaced but I am grateful to at least have each of them. We lost lots and lots of photos- dating, engagement, marriage and kid and family pictures. My journal of wedding ideas, list of invites from our wedding, and the list goes on and on. We also lost all our wedding cards which I held onto and were very special since our wedding album was misplaced when we moved. It had signatures on cards that I can never replace and was something dear and special to me. Shane and I have lost all our Grandmas, and the cards had their personal handwriting and sentiments on them. We held them all dear to our hearts but it's things like that that I can never get back or replace. I held it together for a good 2 hours and had to come up to my room and just bawl. My precious daughter came up and gave me a big hug from behind and quietly said, ‘it'll be okay Mom’. It just hurt knowing that the memories we had saved for down the road were gone. I don't want to sound ungrateful, because yes-I have my family, we are all safe and can move on with life, but there is just something heart renching about pulling things that were precious memorabilia out of a rubbermaid that is drenched in sewer water, just sopping wet as you toss it into a garbage can. It is photos that we must have thrown the negatives away to and ones that people had given us that they had taken, that just rips your heart out. It was just a hard day for me physically and emotionally. Today I can say was a bit better, hard yes, but I know I made it through yesterday and can do the same today. Our things such as the furnace, water heater, washer, and dryer seem to all be back in working order- just like us. I also lost probably an easily $300 or so in scrapbook things, but all that is replaceable over time. I am blessed and ready for a better week ahead:) God is so good and I am thankful I still have my precious family all together with me and that we still have memories in our lives to share. Just gotta start fresh again and make sure that the memories will be ones that they can remember and share on their own. My sweet honey and I have been married for a wonderful 16 years together and this was our first real disaster. God helped us thru it and I pray we can go 16 plus more years without any other disasters. Thank you for letting me share my heart and just be open with you! Most of all thank you for your prayers!!


Love You-

Jamie

Long overdue update:)

Where to begin?!  So much has happened since my last post!  Time slips by too quickly!!

For Dr's appointments- I've had one with the hematologist.  My blood levels are still low, and one test showed that I am functioning at 80 when it is suppose to be around 500-1000.  He is trying to get a shot called Procrit approved with insurance to help get my levels built up and not have to have so many blood transfusions.

I also have had troubles with the hole of where the j-tube was.  It still has not closed up and is still draining like crazy.  I went last week to have a radiologist to try to have the j-tube placed and to gradually go down in size of tubes till the hole would close up.  Unfortunately, he was unable to place it all the way in.  It seals up, but due to the pressure inside it opens up the hole and gushes out bile, burning the skin around it.   I went this week for a second opinion and this Dr. has had 3 other cases like mine, and it has something to do with the way they do the laparoscopic procedure is done when they place the j-tube.  He said what would be best, and he done with the others like this, is to go in above the hole and make an incision and find the hole in the intestine, sew it closed push it away from the abdominal wall and sew the abdominal hole closed too.  Thankfully, I'll be out and in dreamland when he does it.  I am scheduled to have it next Wednesday.

This Saturday is a very special day in our house.  It is Kelsey's 12th birthday!  Hard to believe that my baby is gonna be 12 years old!!  12 years old people!!  Yikes, time has REALLY flown by!  I miss the baby/toddler days.  Her little ringlets of curls on her head.  Her hair still has some natural curl to it.:)  The one who as I would make Christmas cookies and have them on the table cooling, would sneak one from the table and I'd find chocolate melted around her mouth. Ha!  Since she was little she has had a tender heart.    She has grown into a very beautiful young lady.  She has such a love for God and a willing heart.  She has been such a blessing to me with me being sick.  She has had to grow up quickly- and that can be both good and bad.  I don't want her to miss any of her childhood, and grow up too quick on us.  She is staying ahead of her studies in  home school. She has less than 2 months and she will have completed 6th grade.  She had a gift card to Target a few weeks ago and was wanting to buy a baby doll, and I told her no.  We just CLEANED their bedroom a week before and got rid of a sack FULL of toys.  She still has some dolls and baby dolls but she is going to be reaching a point where she won't play with them.  :(  It still seems like yesterday when we came home from the hospital with her.  Shane and I were talking the other day about how she said things when she was a toddler and got to laughing about things she would say.  :)  It is so neat to see her blossom into the young lady that she has become.  I am enjoying our time together.:)

The kiddos start Spring Break today!!:)  We are planning on taking a short trip to Shipshewana, IN on Monday and Tuesday.:)  Also planning a trip to the gummy bear factory.  The kids haven't been their either so that will be a fun place to stop also.  Be still my heart!:)  Ha!  We are all looking forward to the little get away. What a beautiful day it was, perfect to start Spring break on!  It was in the 50's today, and the kids wanted to wear their flip flops....umm no sorry not quiet yet.  But we're getting there:)

Wishing you all a Happy Easter.  I'm sure most of you will be getting together over the next few days with family and enjoying memories and treasured time together.  Don't forget to take time to focus on the true meaning of Easter.  To celebrate the resurrection of our Lord Jesus Christ.  He has RISEN and is ALIVE FOREVERMORE!!!

Thank you so much for all your love, support in cards, phone messages, and emails and most of all, all of your prayers.

LOVE-
Jamie

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

Bone Marrow Biopsy

Today I had the bone marrow biopsy. Everyone there was so friendly and nice. The Nurse Practioner who did it and the nurse were wonderful. I am hurting so I 'll keep this short. They did the biopsy in my left iliac crest. I was given some versed and they had me put 2 ultram thru my j-tube. I was awake for the procedure and able to let her know that I could feel her going in and hitting bone. She numbed me some more and was able to get the samples she needed. She kept saying just let me know if you feel it and I'll numb you more. Just didn't think that I would hurt this much after the procedure. Things could be worse, so I don't want to complain. I made it home and have been able to rest some on the right hip. I don't think I'd better do my 5 mile run in the morning like usual. (Just kidding:) Sometimes you have those moments that you just have to smile to keep from crying.:)

When I got there I had to have a CBC, and my Hemaglobin was 7.9. It doesn't surprise me considering the way I have been feeling and my heart has been racing. They have me getting 2 units of blood in the am as an outpatient. Guess you never know, maybe I'll feel like running out of the hospital afterwards:)

Matthew is starting to cough more but it is not as harsh and barky. Thank you so much for the prayers for our family. God is so good! Love-Jamie

The past few days...and tomorrow

It has been a couple busy days that have left my head spinning.  I had lab work on Monday and got a call from Cleveland saying that one thing was critically low and wanting me to go it a bag of the phosphorus. Well by the time we got off the phone, they were able to get a vial of it for me to add to my TPN each nite til my TPN gets mixed again on Wednesday.  :)  That saved me a trip from having to go to the ER when I had the visitation for my friend, Mary, to be attending.

Well...fast forward a few hours later and 9 pm I'm hooking up to my TPN, and when I flush my line I hear a pop and feel something wet.  As I look down at my double hickman line, the one I was flushing busted.  I think quick, and remember that I had a repair kit that they gave me for cases like this.  Shane found it and we put a plastic hemastat clamp on it to keep any air and germs out.  We look at the instructions in the kit and decide we better not try to do this on our own since we had one chance to do it right.  We got to the ER and they thankfully were able to fix it temporarily.

We came home and hooked to TPN.  With the way my blood sugars have been, I was told to check them occasionally.  Well, I remember at 12 am and so I hurry and check it-236. I wrote it down and went back to sleep.   The next morning while I was getting ready for the funeral I was fixing my hair and all of a sudden bright splotches of light was all I could see. I got to my bed and checked my blood sugar...50.  YIKES!  I did some sugar and a sip of juice and 20 minutes later it was up to 72.  What a crazy few days!  So thankful for prayer.  Who knows what Gods kept me from the past few days also!

 My little guy is croupy and temping off and on.  Trying to nurse him to health and protect myself from it at the same time.  It's hard not loving on him-just find different ways to do for now:)  Hate him being sick ,but enjoying the time together.

Tomorrow is the bone marrow biopsy in Peoria.  It's not till 1 pm and then Monday I go to Moline for a consult for my Hickman line and Tuesday they will put a new one in.  I've learned to always be ready for whatever is to come.  I would never have guessed last week that all this craziness would have happened, but I am blessed to say through it all I'm still trusting in God and leaning on HIS everlasting arms and thanking HIM for the strength he gives.  I'll keep praising HIM through it all.

Thank you for all your prayers!

Love
Jamie

Dr appt, updates, and tidbits

I am gaining my strength a little each day.  It still does not take much for me to tucker out.  So glad for NAPS! :)   They help me get recharged.  Some days I get by with one, other times it's two to make it through till bed time.

I had an appointment with the blood doctor to go over my hemoglobin.  I am producing new red blood cells which is good.  The question is why do I keep loosing blood.  When I was at Cleveland Clinic, they did 2 endoscopes and they both were fine regarding any blood loss.  So just to make sure all is well, I am having a bone marrow biopsy in the Peoria office on this Thursday.  I will be put out by the "twilight meds".  Then follow back with him in 2 weeks.


I want to thank you for praying for my friend, Mary, and her family.  She did pass away on Wednesday night.  :(  If you would please keep her family in prayers this week and the weeks to come, as I am sure it will be difficult for them.  She will be one very missed person.  I am grateful for the friendship I was able to share with her.

The weather is a bit yucky today.  We left church this afternoon with it sleeting a little and by the time I woke up from nap, it was icy.  Church was cancelled this evening, so it was a nice relaxing time.  The kids were wondering about supper by 5 pm so we did fresh veggies and dip and a good old frozen pizza.:)  Ha!  They played and giggled a lot tonight.:)

Hard to believe that January is almost behind us!  God is so good and I can't thank Him enough for His many blessings! So glad to be at home and enjoying my family!:)  It feels so good to be making steps forward, instead of backwards.   It feels so good to be up getting them off to school and when they come home going thru their backpacks and seeing what is in their folders from the day.  Letting them tell me the excitement of the day while they eat a snack.  I am enjoying the snuggles, hugs, kisses, and I love you's.  They have been a big help with things around the house also.  :)  My heart is full tonight as I get ready to crawl into my bed.  I am so blessed!  I am so thankful for the greatest husband who keeps our family going tying up all the loose ends at home and does his own work at his office-never complaining!  Thank you Lord for blessing me with such a wonderful husband who has stood by my side and held the kids together thru this.  God is our refuge and strength!

Thank you for taking the time to read my blog.  Thank you for your prayers for us.  God is so wonderful!  I want to thank you for your emails of encouragement also!

Love-Jamie

Getting back to the routine

It feels so good to be home and to be a family. :)   Not much to report.  It doesn't take much for me to wear out easily though.  I feel as though I am taking baby steps, but I am thankful it is at least steps forward.  I'm ready to take some giant steps, but it is too much on me.  I am so grateful for my naps.  Day by day, with patience, I'm making it.  I am beginning to gain my strength.:)  I can't thank you enough for all your prayers.

I have blood work tomorrow and Thursday I have an appointment regarding my hemoglobin.  

I am asking for you to please pray for a friend Mary that I use to work with at the dentist office.  She has cancer and is in the last stages of it.  Her daughters are helping with her care.  I can't imagine how hard it is for them, but yet rewarding to them to be able to do it.  I was able to see her Friday for a little bit.  It was rough, but so thankful I was able to.  Please remember Mary and her family through this time. May God just surround her room with His presence and be with all of them.  She's one very loved lady.  Thank you so much for praying for them.
 
Love-Jamie

HOME :)

We made it home last night. :)  It felt so good to be in my own bed.  My TPN and supplies were all here at the house.  Shane unloaded the vehicle and it did not take long for me to get hooked up and in the bed:)   I sat my phone alarm so I could take my meds and not get off track.  That is probably one of the hardest things for me when adjusting back to home.  I am the one who has to draw them up and administer them, too!  I have 3 meds that are by IV and one that I do through the J-Tube, so it's not too bad.  It is just so good to be at home with my FAMILY.  

I woke up around 10 and by 11 or so my blood sugar was under 60!  I was feeling pretty shaky so I did a blood sugar check and called to see what to do.  I think tonight I'll check it before bed and maybe early morning to see what it's doing.  The TPN is running at 12 hours instead of 16 and it is so nice.  I am enjoying the freedom of no backpack:)  

Today, I was able to enjoy the kids coming home from school.  The simple little things like a BIG hug, hearing about their day, and the famous words, "I'm hungry!" or "What's for snack?":).  I had fun going through their folders in their backpacks.  Hearing Kailey practice her  recorder.  Listening to all the fun and excitement of their day.  Just sitting in my bed with Matthew and reading a book.  

My wonderful husband came home tonight and with the kids brought up the totes and we put the Christmas decor all away.  I did a little here and there, the kids had a blast tearing down, I mean taking down:), the tree.  I'm sure in the summer, or when I am feeling more up to it, I'll try to go through and organize the boxes a little better.  It feels good to at least have a little bit of the house back in order.  ahhh

Tonight, I am enjoying the sounds of bath water running for kids.  Hearing them play together.  Listening to them laugh and giggle.  The kids going up and down the stairs.  The sounds of suit cases being unpacked. Receiving some much needed hugs and kisses.  

God is so good, and I feel so blessed!

Hopefully the last post from room 5 :)

I am posting from room 5 of the OB/GYN unit hopefully for my last time. I had my EGD today and the doctor who did it was so nice. He sat himself at the edge of my cart and just talked about my history with the gastroparesis, then about my husband and his job and about the 3 kids. When it was time for the procedure, he came and got me by himself and wheeled me to the procedure room. All went well with the procedure and looked good with the J-Tube. :) I did have some polyps, but he didn't want to remove them today and cause bleeding to start. So glad that nothing else was found. I don't need any other issues going on. Taking it easy tonight and I should be getting discharged tomorrow!!! Shane is packing up the hotel tonight so we can hopefully head from the hospital to being on the road to HOME.:)

I am also going to be having more calories added to my TPN but only be on it for 12 hours a day. They are changing that, starting at 10 pm tonight.:)

So grateful to the Lord for wonderful staff. The Doctors, Residents, RNs, Aides, & Transportation people have all been beyond wonderful. :)

There is a song I've had going in my head yesterday and just thought I'd share it with you. I need your mercy, I need your grace, I need your Hand leading the way. I can't make it without you, not for one day-cause I need your mercy and I need your grace. It's a beautiful song and how very true-I don't want even one step that I take through all of this... to be without being with HIM. I don't want to do it by myself or ever think that I can. I need HIM by my side guiding my every step I take on this journey. I know I am never alone and he is right there beside me faithful & everything I need. To God be the Glory. :)

Thanks for all the prayers, love, and support!!!

Love-Jamie

Posting from room 5

I never did get to explain what floor I am on at Cleveland Clinic. :) I'm on the OB/GYN unit! :)) No worries, that is not the reason for the nausea and vomiting. They were full in the GI floor and since they were low census I was placed here. I have been well taken care of! :) They know that my tray HAS to have a cherry icee.;) It feels so good on my throat.

Both teams came in today. The nutritional team added more protein to my TPN and changed the phosphate. The GI team said it was a no go for the EGD with balloon today so tomorrow instead. I had the RN check to be sure that I was on the schedule with a time instead of trying to just pencil me in somewhere. I am down for 1 pm to have it done Wed, Jan 9th. They are just wanting to check the area where the J-Tube is with the redness I have on the outer opening of the hole.

Thank you for all your prayers! God is Faithful! :)

I'm still here at the hospital

I'm sorry for not updating sooner, thank you for understanding and being patient. :)

Wowsers!! Thank the Lord that Sunday is behind me!! It was a very rough day to say the least. By the time I got to feeling well enough to call Shane, he was already in the hospital and on his way up to my room. He came in and I explained how I was feeling and wasn't up to any company. They stayed about maybe 30 minutes and he wasn't feeling well himself with a head cold and stuff so they headed to have lunch and go to the hotel and do laundry and rest.

Thank the Lord for answering prayer though. I was able to start making a turn for the better by late that evening. With Sunday being so rough for me, the GI team decided to look at the J-Tube by endoscopy so I woke up thinking today I would be added on. Well...they were unable to get me in so praying that tomorrow there is a cancel and they add me on. I am still having pain, nausea, and dry heaving, but greatful to not be vomiting. :) I am so glad to feel like the worst is behind and don't want to go back to that point again. They are adjusting my TPN so it is causing my blood sugars to go crazy above 200, and into the 60's other times.

The staff here has been so wonderful and great. My dear husband deserves a huge steak dinner and the precious kiddos a day at Chuckee Cheese to be a kid all day. They have been very good the times they've come to visit. Matthew had some handcuffs he was playing with today and a nurses boyfriend who is a policeman stopped in to show his real cuffs to Matthew. He took a little time to have some "boy" talk:). It was so cute.

I thank you once again for all your prayers, love, and emails of encouragement. God is Faithful! A song that has gone thru my mind tonight I've been humming is-“I need you more, more than yesterday. I need you more, more than words can say, I need you more, than ever before I need you Lord, I need you more.” I can't remember the verses, but oh just to lean on HIM, knowing He is more than enough and able to see me through. To just lean on the everlasting arms!

Love-Jamie