Thursday, September 29, 2016

Thursday September 29

Colin came in to the hospital around 6.  At 8:00 we were taken to the GI lab for my tests.  We waited until about 9:30 and then they took me back for my procedure.  It took a little over an hour and I was in recovery.  

They said everything looked good to the naked eye.   They did take biopsies from my upper digestive system as well as my small and large bowel.  They will have the biopsy results in the next couple of days.

We were taken back to my room around 11.  I'm in a lot of pain.  They are trying to find a way to manage it.  I have been watching tv all afternoon and was told to rest.  I have another test tomorrow.  I'm not sure what time.  They said they will come and get me when they are ready for me.

Wish me luck!!  Have a good night!

Wednesday September 28

Woke up early and took my meds.   Got dressed and we headed in to clinic.

They drew my labs and everything looked good.  They still can't figure out the source of my pain so the team decided to admit me.  They gave me iv fluids, pain meds and mag.   

We waited until about 5:00 for a bed.   I was taken to my room and given my assessment etc.   they gave me my eve and night meds and I just laid in bed watching tv.  They told us that they are scheduling tests for tomorrow to see if they can find anything.

I rested as much as possible with the nurses coming in and out for different meds, iv fluids, gtube care, etc.  

Tuesday, September 27, 2016

Tuesday September 27

Was up before 4.  Amber was catching a flight at 6 so I knew she was up.  We were texting back and forth.  She was already at the airport waiting on her flight and of course she had her laptop out and was working. We stayed occupied for about a half hour.   She caught her flight and made it to St. Luis safe and sound. 

I took all my morning meds.  I got up to go to the bathroom.   As soon as I got in there my bag popped off the ostomy seal and went everywhere.   Great start to the morning.    I cleaned everything up, replaced the bag, changed my pajamas and layed back down.  I couldn't fall back asleep.  I finally got out of bed around 10:30.  I showered and got dressed.  I straightened up the mess I made in the bathroom and bedroom as well.  I did some laundry as well.  I ended up falling asleep from 1-2 or so.  

I'm still having a lot of abdominal pain, a horrible sore throat, headache and all around light headednes.  It really stinks because it's hard to get comfortable.  

I got up around 5 and had oatmeal for dinner.  I also made myself a slushee.   It helps numb my throat for a little bit.   We have clinic tomorrow at 6 again so I will update after.   Have a good night!!

Monday September 26

Got up at 5.  Got dressed and packed my hospital bags while Colin showered.  

We got to clinic at 6.  We signed in and were taken right back.  They drew my labs and gave me pain meds.   The nurse came back about an hour earlier.  They put in orders for me to get mag so the nurse gave me Benadryl and hooked the mag up to my iv.  It takes two hours for the bag of mag to be infused.

About halfway through the iv, the doctors made their rounds.  Everything on my bloodwork looks good.   They told me to restart the lovanox shots and they would recheck my levels on Wednesday.  They put in my discharge instructions and I was told I could leave as soon as my iv was done.   It was done about a half hour later.  

The nurse came in and unhooked me.   We were headed home about 11:30.  I put on my pjs and stayed in bed the rest of the day/evening.  I was completely exhausted.   It takes a lot out of me.  

Tomorrow is a new day so hopefully I can be a little more motivated.  Sweet dreams!!

Sunday September 25

Colin left early in the morning for a bike ride.  He got home around 9:30.  While he was gone I showered and got dressed.  I unloaded the dishwasher and folded and put away laundry.

Colin came home and got showered and dressed.  We didn't do much the rest of the day.   I went to the bedroom to lay down around 11:30.  I just chilled out in bed and watched Say Yes to the Dress.  It must have been a marathon day.  

I stayed in bed the rest of the day.  Even the tiniest household tasks take everything out of me.  Colin watched football most of the evening.   

I finished up my meds around 8 and went to bed.   We have clinic tomorrow at 6 so we will be up bright and early!

Saturday, September 24, 2016

Saturday September 24

Woke up.  Took my meds and ate breakfast.  Colin left to go for a bike ride.  I went back to the bedroom to watch tv.  My stomach pain is not going away even with all the med changes.  Hopefully they just have to get into my system and they will start working.

Colin got home and gave me my shot.  He went in to the living room to watch tv.  I took a cat nap for about an hour.  Around 2:00 I got up and ate half a tuna salad sandwich.  I cleaned up the kitchen, went back to the bedroom and watched Confessions of a shopoholic.  It's a mindless movie.  I read the book series a couple of years ago.  It's very light hearted.  

I folded and put away some laundry.  It's not much but it got me up and moving.  Colin made dinner.  Baked chicken, mashed potatoes and asparagus.  It was really good.  Hopefully my stomach can process it without a problem.  He's been doing research on which foods are easy to digest.  We were surprised asparagus was on the list but it was!!  Kind of crazy.  After dinner I read a magazine and am now watching Friends with Benefits.  It's another light hearted movie.  Easy to watch and won't make me cry.  Time to go get my last livanox shot (hopefully my last one).  Then I'm going to bed.  Have a good night!!  I'll update tomorrow

Friday September 23

Woke up early to go to clinic.   They were really busy so we waited about a half hour before they took us back to our room.   They drew my labs and I waited for the doctors to make their rounds.

Bill came in pretty early.   He gave me pain meds and Benadryl to premed me for the mag and gancyclovier.  They hung the iv's and we waited for the team.   They came around about an hour later.  Dr. Cruz is stumped by my pain.  I started crying because I am just so frustrated with everything.   He's still trying to get answers from the GI team.   Hopefully they will get back to him soon.

They added another antibiotic to my daily meds.  I have to take it three times a day.   They are also weaning me off the lovanox and transitioning me to cumadin which will be awesome!!  Hopefully the bruising on my arms and legs will go away quickly.  

The team said everything else looks great on the bloodwork.  They also sent me for an X-ray.   The X-ray showed gas and food debris in my stomach and small bowel.  I have to flush my g tube twice a day and hook it up to a gravity bag to drain as much as I can. They also want me to eat 6 small meals/snacks a day vs 3.  I haven't really had an appetite so I haven't been eating much.  After the results from the X-ray came back we were discharged.  It was a very long day.  We got home around 2:30.  I put on my pjs and watched BRAVO most of the evening.  Colin made dinner.  I ate a little and went to bed.  It was pretty uneventful. I took my night time meds and went to bed for the evening.   

Thursday, September 22, 2016

Thursday September 22

Good morning!   Woke up feeling more rested than I have in a while.  Ate a yogurt so I could take my meds.   Took my 6:00 meds and stayed in bed a while.   Colin left bright and early to go for a bike ride.  Its a nice stress reliever for him and with everything that's been going on I have a short fuse.   I'm constantly snapping and getting annoyed.   He's been taking the brunt of it. I just have so much going on physically and emotionally and I can't handle it some days.  

While he was gone I got showered, changed my ostomy bag and straightened up the bedroom.  I went to the living room and made a grocery list to get us through the next couple of days.  Colin got home around 9 and showered and got dressed.   We ran over to Verizon to talk about our upgrade.  We are eligible for new phones and if we trade in our current phones we won't have to pay anything for the upgrade that we want.   Problem is....they are of course on backorder.   At least we have all the details.  They said they will call if they get them in sooner but they are on backorder until the end of October.  

We left Verizon and headed to the grocery store.   I got a cart to push and we went shopping.   About halfway through the store I started feeling really dizzy and foggy.  My pain was getting worse and worse the more I moved.  We got to the checkout and Colin sent me to the car to sit.  I went out and waited for him.  We got back to the house.  I put on my pjs of course!   I helped Colin put away the groceries and we made lunch.  I had a slider size park bbq with some no salt chips and he made some fish sticks.  After lunch I went in and layed down.   I watched BRAVO to catch up on my Real Housewives since I don't get the chance to watch it when I'm in the hospital because they don't have that channel.  

I got out of bed around 4.   Colin made dinner.  We had taco salads made with ground turkey.  It was really good.   I ate, cleaned up as much as I could, got my meds and bag packed for clinic tomorrow and went in to lay down.   I'm in bed now for the night.   I will update tomorrow.  Have a good night!

Wednesday September 21

Woke up at 5 to my alarm clock.   I slept better last night.  I think my exhaustion is starting to catch up with me.  Ate some yogurt, took my 6am meds and packed my backpack to get ready to go.  

Got to clinic a little before 6.   They took me back almost immediately.  I was put in a private room which is always nice.  The nurse came in and drew my labs.  Colin watched Netflix and was just as fidgety as I was.  Neither of us could really get comfortable.  

The doctors/team made their rounds around 8:30.  They said my labs look good for the most part.  My prograf level is high again.   I am dry so they gave me three hours worth of hydration before they would let me go home.  Bill also gave me iv pain medicine because I was hunched over in pain and uncomfortable.   He left and said he would be back to check on me.  I just chilled out and layed there with my eyes closed in order to relax.  Bill stopped back in my room to see how I was feeling.   He gave me another dose of pain medicine and told us to come back on Friday for labs again.  

We got home from clinic, I put on my pajamas and layed down.  We didn't get home until close to 2.  Colin needed to burn off some energy so he went to the driving range.  He was gone for a couple hours.  I heated up the pasta leftovers from dinner.  I took all my evening meds and then went to bed.   I was dozing off/on since we got home.   Hoping for a good 6 straight hours of sleep.  I'll update tomorrow.  Sweet dreams!

Tuesday September 20

Woke up and was still in excruciating pain.   I got out of bed, went to the bathroom and got my morning meds together.   That was a very difficult/painful task.   I ate a yogurt so I wasn't taking my meds on an empty stomach.  I took the meds, hooked up my antibiotic and layed back down.   I spent the entire day in bed with the exception of getting up to go to the bathroom or to eat something.  

It was a long day.  I was in too much pain to move.  Colin made me get out of bed to eat dinner.  He made pasta.  Easy and light.  

I took all my evening meds and went to bed.  We have to get up bright and early tomorrow for my clinic appointment.   Fun! Fun!   Hopefully we will have some answers.   

Monday September 19

Slept a little better last night.  They were alternating my oral pain meds with the iv pain meds in order to keep it in my system and to make it easier on me when I go home.  Dr. Cruz and Bill made their rounds early.   They were there before 7:30.   My labs were good for the most part.   My creatin level was high so they had to give me albumin which takes about three hours to run.

He said I could be discharged but I have to come back on Wednesday.  I'm still having horrible pain and am achy all over.  It takes me a little bit before I gain my bearings in order to walk or move around.  If I'm not slow and careful I have bouts of dizziness where I feel like I'm going to pass out.  Dr. Cruz changed around some of my meds and we made the changes on our spreadsheet.   He gave the nurse all the discharge paperwork and we waited for the albumin to finish up. In the meantime Colin cleaned up my room and packed up the car.

We ended up being discharged around 2.  We stopped at Target so Colin could get my prescriptions filled that they had just given us.  I sat in the car and waited.  We got to the apartment and I put my pjs on and layed down.  I spent the rest of the afternoon/evening laying in bed.  I put on all my meds and was ready to fall asleep around 8.  I just layed in bed for a few hours and think I finally fell asleep somewhere around 10.  It was definitely more comfortable in my own bed.  

Sunday September 18

Another typical hospital night.   Colin got to the hospital around 7.  He brought breakfast for Dr. Cruz and an apple dumpling for me with some hot chocolate.  It was delicious!!!

Dr. Cruz made his rounds after 9.   He said they would keep me another night to see if we can get the pain under control.   He said he would be back in the morning to check on me.  

I didn't do anything all day.  I was in a lot of pain and was extremely lightheaded.  I stayed in bed most of the day.   Pretty uneventful and boring.   Hopefully I'll be discharged tomorrow.  

Saturday September 17

Typical hospital night.   I was being poked and prodded all night long for one thing or another.   Between meds, pain meds, itchiness and vitals.

Colin came in a little after 6.  He sat and watched Netflix and I tried to fall back asleep.  The doctors made their rounds around 9:30.  All my labs were good.  My prograf was a little low so they gave me an extra pill.  My other levels were good.  They gave me some K Phos supplement because it was a little low.  The pain is not subsiding and the more I move the more it hurts.  

I went for a walk with Colin a little before lunch.   I also went upstairs to the 11th floor and showered.  It always feels good to shower when you are stuck in a nasty hospital bed for days.  

Colin left around 2.  I spent the rest of the afternoon/evening in bed watching HGTV and on my phone pinning recipes.   Maybe tonight will be better.

Saturday, September 17, 2016

Friday September 16

Had a typical sleepless hospital night.   Between pain, peeing, meds and vitals I was able to cat nap here and there.   My throat is sore which doesn't exactly make it easy to?!?.  

Colin got me hot chocolate and got himself some coffee. We watched tv for about a half hour and then the nurse came and told us transplant was here to take us to the GI lab for my illioscopy.  He took us to the Lab and they took me back right away to do the prep.   Once I was changed and signed my consents they took me to the procedure room, gave me the propophal and off to sleep I went.   I woke up in recovery.   Colin was already by my side when I was waking up.   About 10 minutes later the doctor came out and said that everything looks good as far as she can see with the camera and that they should have the actual biopsy results by Monday Afternoon.   After they left I was taken back to my room.

Dr. Cruz and Bill were rounding.  They said they are keeping me until at least Monday so they can be sure they have the biopsy results.   They are also going to change some of my med dosages slightly.  He advanced me to a GI soft diet which will give me a little variety and flavor in my meals.

I ordered seashell noodles for lunch and had some mandarin oranges as well.   Colin left to go home and chill out.  I watched HGTV pretty much all day and night.  For dinner I ordered an open fave turkey sandwich with gravy and mashed potatoes.   It was very good after not eating food for a week.   After I ate I watched more tv, went for a short walk and then turned in for the night.  I'm extremely tired and ready to go home.   I'm turning in for the night.   Sweet dreams!!!   

Thursday, September 15, 2016

Thursday September 15

Didn't sleep well again last night but was a little more comfortable because they changed my pain medicine from every 6 hours to every 4.  

Colin was here early this morning.   The doctors made their rounds and said they are going to do another scope/biopsy tomorrow.   I will be put under for the procedure so that they can go further into my intestine for samples and take from multiple sites.  They ordered X-rays to see if there is any change in my stomach from the X-rays on Monday.  They left and said they would stop back later.

The X-ray tech brought the X-ray machine to my room and did a few pictures.  Colin and I took a walk after that and went to the 11th floor so I could shower.   The hospital is full so they had to put me on the 5th floor in overflow which is the transplant ICU.  There aren't any showers on this floor at all.  It felt so good to get a shower and wash my hair!!  

We went back to my room.   Shortly after we got back the doctors came around again.  They said the X-rays show that my stomach has emptied for the most part which is a good thing and they advanced my diet to a full liquid diet.   They said not to be worried until we have something to worry about and that they would see me in the morning.

I spent about an hour going through mail and catching up on bills.  Colin left the hospital around 1:30.  I tried to nap but was extremely unsuccessful with all the interruptions.  I really need some sleep.  Every time I turn around I'm being given meds or they are taking my vitals.   It's at least once an hour.   It can be very frustrating at times.  

Around 5, a GI doc came to talk to me about my procedure tomorrow.   It's scheduled for 10 am but he said I may have to wait a little while because they are squeezing me in to their schedule.  He was really nice and said he would see me tomorrow.

I'm exhausted so I'm actually turning in for the night (if I can).    Have a good night and I will update tomorrow.

Wednesday, September 14, 2016

Wednesday September 14

I didn't sleep at all last night.   Between the pain, nausea, iv meds, blood draws and General meds I couldn't sleep for more than a half hour at a time.   It was awful.   I spent most of the night crying.   

Colin came in around 6.   He sat in the chair beside my bed and we waited for the doctors to make their rounds.   When they came in they said my stomach was still full and things were backing up causing the pain.   They also said my EBV levels are trending up again so they are putting me on an antibiotic for that.   They still haven't gotten the rest of my labs back so they said they would come back with my levels and the biopsy results.   Colin left around lunchtime.   I told him he needed a break.   

The doctors came back around at 3.  They hooked up my g tube to drain to see if they could release some pressure.  He said all my bloodwork looks good.   The prograf is low so they have to increase it and check the levels again.   He also told me that they got the biopsy results back.   He said it isn't showing rejection but it doesn't look good.  He is going to talk to Dr. Cruz and they are going to decide if I should get another biopsy and whether or not I will be put under for it.  He said we can talk about it in the morning.   I am extremely frustrated and don't want to talk to anyone right now.   I just wish all these random hurdles would stop so I can have my reversal surgery and hopefully be better.  

I'm going to eat my sherbet dinner and lay down.   I desperately need some sleep and I wasn't able to nap at all today.   Praying that I get some rest.  I will update tomorrow.   Have a good night!

Tuesday September 13

Happy 8th Anniversary to my husband Colin.   I know I can be difficult to live with, deal with and take care of but I want you to know that I appreciate everything you do for me.   I know I'm a witch sometimes, I'm miserable and mean.  I don't always mean to direct it towards you.   I couldn't do this without you.   I love you with all my heart!!!!!  I'm sorry you have to spend our anniversary in the hospital.  Maybe next year we can plan a getaway! ❤️

The nurse drew my labs at 3am.   Then she gave me my meds at 6.   Colin got here pretty early.  They came in and told us that my biopsy would be at 8:45.   Around 8:30 they came and got me to take me for my test.   The doctors were making their rounds and stayed to watch the scope portion.   It was extremely painful and I cried through most of the procedure.  It was really difficult.   

The doctors came in and talked to us.   They said everything on the actual scope looks good and we will get the actual biopsy results back tomorrow.   He said my stomach not emptying seems to be the main issue but he's going to talk to the Gastro group and see if they have any suggestions.   We waited about 20 mins for transport and were taken back to my room.

I spent the afternoon/evening in bed in pain.   It was a horribly uncomfortable evening and an even worse night.   I can only hope and pray tomorrow will be better. 

Monday September 12

Woke up feeling worse if that's even possible.  Colin took my vitals.   My bp was low and my hr was high.   We called the on call transport coordinator.   She said Dr Cruz wants me to head straight to the ER.   She called to let them know we were on our way.

We got there and they took us back right away.  They drew my blood, took a urine sample, gave me nausea and pain medicine.   They did several X-rays.   The small bowel fellow came to my room and checked my abdomen and went over my bloodwork and X-rays with me.  Once again.....my stomach isn't emptying.   They admitted me, put me on clear liquids and changed some of my meds around.   

We were moved from the ER to a room by 2:00.  We got settled in the room and just watched tv.   Colin left once I got settled so that he could Lysol the house and clean everything before I get discharged.  It was an exhausting day going through all of the testing and the stress of the pain.   Hopefully I will be feeling better tomorrow.

Sunday September 11

Woke up feeling worse today then yesterday.  I feel awful and have increased abdominal pain.  I stayed in bed all day.  Nothing exciting.   We have clinic on Tuesday so I don't feel like I need to call in.

Went to bed around 8.  I was dozing in and out all day.

Sunday, September 11, 2016

Saturday September 10

Woke up, ate breakfast.   Took my morning meds. I'm feeling worse today. I'm having a lot of abdominal pain, my whole body aches, I have a horrible headache, the base of my neck hurts and I have a sore throat and swollen glands.  That being said I went back to bed.

Colin ran to the store to get something to make for dinner.  He came home and started cooking. He made chili and put it in the crockpot.   He got me up and out of bed around 5. We sat and ate dinner.  It was a small salad, chili and cornbread. After dinner I straightened up my mess.   I made my sleepytime tea and took my 6:00 meds and then I went to bed.  I'm hoping I will feel better in the morning.  Goodnight!

Friday September 9

Woke up at 5,  packed my meds, packed a bag with extra clothes and some things to do.  Headed to clinic. We got there at 6.  The nurse took my vitals.  My blood pressure was really low.  They drew my blood and sent it to the lab.

The doctors made their rounds around 10.   All my standard levels are good.  My prograf is still a little high so the cut back the dose of my prograf meds.  They also said that I probably have a virus and that I just need to listen to my body and rest.  They discharged us and we headed home.  I went straight to bed once we got home.   

I made a tuna sandwich for lunch around 12:30 then I went back to bed.  I stayed in bed until dinner.   Colin went to the store and while he was there he grabbed a rotisserie chicken.  We had chicken for dinner. It was ok. I'm not thrilled with anything you have to pull off a bone.

After dinner I took my 6:00 meds, made my sleepytime tea and went to bed for the night.

Thursday, September 8, 2016

Thursday September 8

Didn't sleep well again last night.  Same crappy feelings I've been having.  I took my morning meds, ate a little cereal and stayed in bed until about 11.  I got up, showered, changed my ostomy bag and got dressed.   Made a soft pretzel for lunch.   Ate and sat on the couch watching tv until it was time for us to leave.  

We left a little before 1.   My appointment was at 1:20.   They didn't start my ultrasound until close to 2:30.  The ultrasound took about a half hour.  When the nurse was done she went and got the doctor.   When the doctor came in she used the ultrasound machine and looked for herself.  She said everything looks good.   It's a fluid filled cyst and unless it bothers me I don't need to go back until I'm 40.   She also said that the cysts they biopsied last March on my left side have shrunk and everything looks good.  She walked me back to the dressing room and I changed and we headed home.

We headed home.  I was feeling worse and worse as the day went on.  I got home and went to bed.  Colin hung a bag of fluids and hooked me up.  He made tuna salad for dinner too.  I got up around 5 and ate.  I layed back down and took my meds and my antibiotic at 6.  I got up around 7 and made my sleepytime tea.  I'm in bed and settled for the night.  Hoping to get some sleep.  We have to be at clinic tomorrow at 6.   Have a good night!!   Sweet dreams!!

Wednesday, September 7, 2016

Wednesday September 7

Was up all night and unable to sleep.  I was really achey, nauseous, dizzy and had a lot of abdominal pain.  

I stayed in bed all morning.  I still didn't sleep.  I just layed in bed and relaxed until about 10.  Then I got motivated and showered and got dressed.  Around 11 I made pierogies for lunch.  I sat on the couch with Colin and we watched a couple episodes of Alaskan Bush people.  We left the apartment around 12:30 to head over to the women's hospital for my mammogram.   

We got to the hospital and they took me back right away.  They did the mammogram (not the most comfortable thing I've been through).  After she took a couple pictures of both sides they moved me to a different waiting room so the doctor could look at the pictures.   About twenty minutes later the nurse came and got me and said that the doctor wants a few more pictures of my right side.  I went back in and they did a few more.   Then all of a sudden I got really dizzy and hot and everything went blank.   The nurses moved me to the ultrasound room and layed me in the bed.  There ended up being four nurses in the room with me putting ice packs on my neck and doing my vitals.  My blood pressure was high of course which could explain my feeling like that.  

About ten minutes later the doctor came in with the nurses.  She said they need to do an ultrasound because they found a small growth on my right breast that wasn't there when I got my last mammogram a year and a half ago.   She wants to ultrasound it and may need to do a biopsy based on what they find.   She said it would be about an hour and a half and that with me not feeling well she would feel more comfortable with me doing it another day.  I was fine with that. 

The nurse walked me to the dressing room, waited for me to put on my clothes and then she walked me back out to the waiting area where Colin was.  We checked out and scheduled my ultrasound.   It's tomorrow at 1.  Hopefully it will be quick and painless.  

We headed home.  I went straight to the bedroom and put my pajamas on.  I got into bed and tried to get comfortable.   About an hour after we got home Colin said he would run to Cosco and grab a couple of things on the grocery list.   He left and was gone about an hour.   He got about half of the items on the list.   He came home and put the groceries away.   He also picked up a rotisserie chicken for dinner.   He made me a small plate.  I sat on the couch with him and we ate dinner.   We have to go to the store tomorrow to get the rest of the stuff on the list.  Hopefully I'm feeling well enough to go with him and get out of the house.  

After I ate my chicken I took my 6:00 meds and layed back down.   I am not able to sleep and I'm really uncomfortable.  I've been laying here for the past three hours.  Hopefully I will fall asleep and stay asleep for a few hours at least.   Wish me luck!!  Sweet dreams!

Tuesday, September 6, 2016

Tuesday September 6

Woke up at 5.  Ate a little cereal, took my meds.   Packed my medicine bag and the backpack.  Colin hopped in the shower.  I straightened up the bedroom and made the bed.  When he was ready we left and headed to the hospital.  

Got to clinic and they took me back to a room almost immediately.  They drew my labs and put my symptoms in the computer.  We hooked up my antibiotic and ran that for an hour.  At 8 I took the rest of my morning meds.  We hung out until the docs made their rounds.  They came in around 9:30.   Dr. Gonoza said my labs look beautiful.  They didn't need to give me any replacements.   My prograf had gone down so they want to keep me at 4 pills a day for the time being.  They took my EBV level and said I should hear something later today or tomorrow on that.  So the appointment went pretty well for the most part.  When my antibiotic was done the nurse came in and changed my picc line dressing and gave us our discharge paperwork.  We were done and headed back home a little after 11.  

On the way home we stopped at Cosco so Colin could get some golf balls.  I walked through the store.  My exercise for the day. We checked out and stopped at their little food court to grab something for lunch. Colin got a footlong hot dog with a fountain soda and I got a bbq beef brisket sandwich.   It was only $5.00!!! We took the food home and ate.   It was actually really good for being as cheap as it was.  

After we ateColin left to go to the golf course.  He had made friends with the bartender and he keeps giving him free passes for a round of golf mon-thurs.  Pretty sweet deal for Colin.  I layed down in bed and relaxed.  I think I dozed off for about an hour.  I took my 2:00 meds and layed back down.  Colin got home a little after 4.  His allergies are really acting up and he said he had a headache.  He's really been sniffling a lot when he comes in from being outside for a little while.  

I got out of bed a little after 5.  I went to the kitchen and looked for something to make for dinner.  I decided on buttered egg noodles. Colin didn't want them and said he would like a chicken sandwich.  I preheated the oven and put them on a pan so he could just throw them in then.  I sat in the living room and ate my noodles.  When I was done I cleaned up my mess.    I took my evening meds and got ready for bed.  I hooked up my antibiotic.  There was laundry in the dryer so I took it out and folded it and put it away.  I made my sleepytime tea and layed down.  When the antibiotic was done I unhooked it and took my night time meds.   Now I'm laying in bed, updating my blog and watching Chopped.   I have my mammogram tomorrow at 1 and we have no food so we are going to have to go to the store.  Hopefully I'll get some sleep tonight.  I will update tomorrow.   Have a good evening.  

Monday September 5

Woke up, took my meds and ate a little piece of bagel. I showered and ended up having to change my illeostomy.  The seal was peeling up on one side and I wanted to avoid a mess later if it broke.  That's never fun.  

Colin hopped in the shower.  I got my meds together and packed the backpack because I didn't know how long we were going to be there.   We got to clinic right at 6:30.  They drew my labs and said we had to stay until the doctors made their rounds.  I took my 8:00 meds and put on my antibiotic.   The nurse came in and said my mag was low so they were going to give me mag which runs over 2 hours.  She got the mag from pharmacy and hooked it up.   Around 10:30 Dr. Gonoza came in and said my prograf is still a little high and to keep the prograf at 4 a day.  He said to do a liter of fluids when we got home because my bun/creatin  was a little low and I'm not drinking enough.  He said to come back tomorrow to see if there are any changes.  

The mag was done a little after 11.  We were discharged and headed home.  We got home and I put my pjs on and then heated up leftover pasta noodles for lunch.  After I ate I went in to the bedroom and layed down.  I was so exhausted and in a lot of pain.  It was really frustrating.   By the evening it was hard to get out of bed and really painful.  

I made butter noodles for myself for dinner.  After I ate I made my tea, took all my meds and went to bed for the night.  I have to get up early again tomorrow for clinic.  


Sunday September 4

Woke up at 5:45.   Took my meds and got dressed.  Amber got up with me and took me to my appointment at clinic.  We were in and out within an hour.   They only drew blood to test my vancomycin levels and my prograf levels.  We headed back to the apartment.

When we got back we ran in to Colin, Carter and Caden.  They were headed to the garage with their bikes to pump up the tires and then they were going to go to Eat N Park for breakfast.   Amber and I went in to the house and we waited for Bobby to get dressed.  We headed downstairs to go to the car to drive to Eat n park.  On our way down the steps we heard crying.  Apparently the boys were riding on the trail, Caden cut Carter off, he swerved and hit the fence.  His elbow was all cut up and his ribs were sore.   Colin said he hit the fence pretty hard and the handle bars twisted and jammed him in the ribs.   Colin and Bobby put the bikes away.  Amber was cleaning Carter up.   Caden came down the steps and I told him he could ride in the car with Amber and I or he could walk with his daddy and uncle Colin.  He said he wanted to walk so the three of them headed down the trail.  Carter wanted to ride in the car so the three of us headed to the restaurant.

We got there and were seated right away.  We ended up sitting outside.  It was a beautiful day.   Colin and the twins did the breakfast buffet,  I ordered a skinny scrambler which is supposed to be healthy.   It was pretty good.  After breakfast we went back to the apartment.  Carter, Caden, Bobby and Colin walked back.  Amber and I got back and she started gathering their stuff together and loading up her car.  The boys got back and they finished packing up the car.   They ended up leaving around 10.

After they left I put my pjs on and layed down.  I stayed in bed the rest of the day. I was exhausted, still feeling awful.  I felt a little worse than I did yesterday.  

I waited all day for my transplant coordinator to call with my blood results so I would know what meds I should/should not take.  At 5:30 I still hadn't heard anything so I called the on call number and had the coordinator paged.   She called me back about 40 minutes later.   When she called she said that my levels for the vanc were high and so was my prograf levels.   She said she was going to call the doctor and call me back and let me know what to do.   She called back about ten minutes later and said Dr. Gonoza wants me to stop the vanco all together and to cut my prograf down from 8 pills a day to 4.  The prograf level should be 8-10 and mine was at 18.   She also told me to be at clinic the next morning.   It's a holiday so they don't open until 6:30.  They said to get there first thing.

I finished up my evening routine of my meds and my tea.  I went to bed and set my alarm so I would be up in time to get to clinic.   I fell asleep a little after 10.

Sunday, September 4, 2016

Saturday September 3

Woke up, took my meds, showered, got dressed and waited for Colin to get home.   He took the twins for a bike ride and went to Panera.   They brought us bagels and juice.  Apparently the both fell a couple of times.   Colin said they were really good about it and popped back on their bikes and started riding again.

We ate breakfast.  Colin and Bobby left to check out some breweries they hadn't been to yet.  The twins wanted to go to the pool so they put on their swimsuits and got their pool stuff together.  We got some snacks together and made smoothies.   I scooped the frozen yogurt portion and let them add in their fruit and blend it with the nutribullet.   They had fun making them.  They finished their smoothies and we headed to the pool.  

It was actually a little chilly at the pool.   They got in for a little bit and got urbane bundled themselves in their towels and layed in the sun.   They started to get bored so they made up a game.  They put the can of sunscreen on the sidewalk and each threw a flip flop.  Whoever gets closest without touching it gets a point.   They played for about a half hour until Carter cut his foot because he was running (after being told not to run around the pool at least ten times).  Amber ran and got a bandaid.  She fixed him up and we gathered all our stuff and went back to the apartment.  Amber and the boys wanted Chinese for lunch so she ordered PF Changs and went to get it.  I watched tv with the boys.  Amber got back and we ate.   After I ate I put my pjs back on.  As the day went on I was starting to feel worse and worse.   Colin and Bobby said they were really hot and decided to go to the pool.  They took the boys.  I got dressed and ready for dinner.  Amber got ready too.  We went down to see what the boys were up to and if they we're hungry.  They said they were so we went back to the apartment.  Colin and Bobby took showers and we got the boys ready.   I was starting to feel pretty crappy but was trying to hide it.   When everyone was ready we headed to Cheesecake Factory.  Colin dropped us off at the door.   We had an hour wait.    There was a band playing outside and kids were playing in the water fountains.   There were people dancing and having fun.  We sat on a bench and enjoyed the entertainment.   

The hour wait passed by quickly.   They seated us and we ordered our dinner.  I was getting progressively worse.  I had horrible pain in my abdomen, a horrible headache, I was extremely weak and could hardly stand.  I was just completely uncomfortable and couldn't hide it anymore.   Amber, Bobby and Colin decided we should just go home and eat there.   Bobby found the waitress and told her what was going on and she said she would have everything boxed up.  Amber ran to the garage to get the car.  Bobby walked me outside (he actually had to hold me up).  As soon as we got outside we saw Amber.   She parked and Bobby helped me into the car.  Colin still hadn't come out yet so Bobby went in to check on him.  He paid the check (using our gift cards) and we were loaded back in the car and went home to eat.

We got home.  I put on my pjs and sat and ate a tiny bit.  I put on my antibiotics and went to bed.  I felt really bad that we had to leave the restaurant but they were all fine with it.  I fell asleep within the hour of going to bed.  I enjoyed spending the day with my family.  They are so supportive and would do anything for me.   Thank you Colin, Amber and Bobby.   You helped me get through a crqppy day.   Love you guys!!

Friday September 2

Woke up.   Took meds.   Packed my bags and we left to head to the hospital for clinic.  

Got to clinic and they drew my labs.  Bill came in around 7am and checked my abdomen, stoma and my breasts.   I started getting a rash on my chest and it has been getting worse.   It's uncomfortable, sore to the touch and itchy at times.   He put in to have me scheduled for a mammogram to be safe.   My appointment is scheduled for this coming Wednesday.   Bill left and said he would be back when the labs came back.

The team came around close to 9:30.   They had to give me magnesium for a replacement.   They also decided to add two more antibiotics twice a day.  They gave me all three via iv so we were at clinic until about 12:30 or so.   The doctors said everything else looks really good.  They think I'm feeling crappy from what I'm eating.   I've been eating a lot better.   We are actually reading the labels and I've started a new low fat folder on Pinterest.  After my iv's were done, we went home, I put on my pjs and layed down.  Colin and I had dinner and we hung out waiting for Amber, Bobby, Carter and Caden.  I was super excited they are coming for the weekend.  I miss them so much!

I went in to the bedroom around 8:30 to chill out.  Colin watched golf and hung out in the living room.  They got to the apartment around 10.   They had a late start because Amber is closing out her end of the month on her books.   When they got here, Colin and Bobby left and went to get some beer.  Amber and I sat and talked for a little bit, turned on the tv, found cartoons, got the boys settled and they were out and asleep within 10 minutes.  

I said goodnight and went in to bed myself.  It was a long day but I managed ok.  

Thursday, September 1, 2016

Thursday September 1

Can you beleive it's September already!?!?  So crazy.  
I was up all night because I still feel pretty crappy.   I did my meds, ate some cereal and layed back down.  Colin had left around 7 and got home around 10:30.  I got up and put dinner in the crockpot.  My favorite dinner in the crock pot ever!!!  Thank you Amanda Abrashoff!!!   It's chicken with stuffing.  You put 4 chicken breasys at the bottom of the crockpot.  Spread a box of stove top stuffing mix over the chicken.  Mix together a can of cream of chicken soup and 1/2 cup of sour cream and pour over the stuffing mix.  I use a spoon to spread it out as evenly as possible.  Cook on low 4-6 hours.  Delicious!!!

I made tuna patties for lunch, cleaned up the kitchen and went back to bed.  I fell asleep for about an hour but just stayed in bed.  My pain was pretty bad today and my lightheaded, dizziness wasn't getting any better.  I got up and out of bed around 4.  I showered and changed my illeostomy bag.  After my shower I hooked up my antibiotic and went to the kitchen to see what else I was going to make to go along with the chicken.  I decided on mashed potatoes and mixed vegetables.  Once I figured out what I was making I set it aside.  They won't take long to make but I still had about 20 minutes left on my antibiotic so I got out my pill boxes and filled them up for the week.

My iv started beeping that it was done so I disconnected from it and flushed my iv port.  I went back to the kitchen and made the potatoes and veggies.  Colin and I watched tv while we ate.  

After dinner he helped me clean up the kitchen.  I made some tea, took my 6:00 meds and took my
Blood pressure.  It was a little high so I took my bp meds as well.  I watched Bring it On and dozed on and off until about 7.  At 8, I took my night time meds and had Colin give me my lovonox shot.  I am now in bed for the night.  We have to be at clinic tomorrow at 6 for labs.  Hopefully it will be an early day.  We will see!!!   Have a good night.  I will update on my appointment tomorrow.  

Wednesday August 31

Got up and did the usual- meds, breakfast, shower.

Colin took me to target so I could exchange the water filter I had purchased earlier in the week.  I bought a Britta  filter and we have a Pur filter system.   While we were there we got more orange juice and swifter pads so we can mop the kitchen and bathroom floors.  

We got home and made lunch.  I had half a tuna salad sandwich and some fruit salad.  After lunch I put my pjs back on and layed down.  I slept for about an hour but had no energy to do anything.   I stayed in bed and watched 7th Heaven.  I got out of bed around 4:30 and made another tuna sandwich.  I watched tv in the living room with Colin and ate my dinner.  After dinner I straightened up the kitchen, made my tea and went back to bed.

I am still having the dizziness, shakiness and stomach pains.  It's really uncomfortable.  My blood pressure has been good all day so that's not why.  I'll talk to them again on Friday at my appointment and hopefully they can give me some answers.  

Tuesday August 30

My alarm went off around 5.  Nice and early.  I got dressed and ready for my clinic appointment. I grabbed all my meds and flushes I needed so that I had everything for the day just in case.   I packed everything up and put it in Colin's backpack.  

I stripped the bed down and threw threw the sheets and pillowcases in the washer with bleach water.   One of my lovonox shot spots started bleeding and there was a couple small spots of blood on my sheets.  I grabbed a clean set of sheets and a clean comfortable out of the hall closet and put it on the bed in case we had a long day at clinic.   

We arrived at clinic a little before 6.  We were taken back to my room around 6:30.  I layed there for about a half hour and the nurse came in.  They drew a LOT of blood today.   They are checking for anything and everything.  She told me my scope was scheduled for 8.  The nurses kept coming in my room messing with the computers and the suction.   They couldn't do the procedure because nothing was working.   They cancelled my illeoscopy in 7west but were able to touch base with the guy doing the scope and he was able to fit me in at 1:00.   Around 11:30, the transport team came and got me and brought me down to the GI lab.   Colin came with me and they allowed him to come back to their holding area where they get you ready and prepped for procedures and surgery.   

They got me ready and took me back to the procedure room.  I was awake through the procedure.   Of course I was already in pain.   Then they got to that spot where I sometimes get a kink in the intestine.  It's about 10-15 cm in when they start exploring.   They really make it hurt and swollen because they have to pump it with air and water to try and expand it to get in a little further so that they are grabbing samples from different areas.  They were finally able to get samples and I got dressed again.  It was extremely embarrassing.  It's hard enough doing things the way that we did originally 

Colin ran back out to the car.   He grabbed the backpack and my purse.  I gave him some $ in case he wanted anything from the cafeteria.   By the time I got dressed and got the antibiotics for you Colin Carlock.
He may not have been up my butt all day today.  They brought out the dishes.   The quinoa was the biggest downfall for all Lancaster and the food.  Want me to try and plan with you?!?  

I'm working with Bill.   Jess said that I could run mine as long as I'm the one hooking it up.   I put on my antibiotics and ran them until they were done.  Once they were I friended them on Facebook.   I have to
Email her for homesick info (I like to do that fast.    .   They just give the info with whatever they have that day.   I'll look into some things to Do That are free so I can.

It's way past my bedtime.  I will update tomorrow.   Have a good night!