Monday, May 30, 2016

Sunday May 29

Colin came in early and brought bagels.  I had a cinnamon bagel for breakfast.  It was really good.  

The docs came in and made their rounds.  I had low potassium, magnesium, calcium and a couple other things so they had to hang them via iv to replace them.   I was hooked up to iv's all day long.  I also had a lot of swelling in my ankles and legs so the doctor ordered a Doppler scan to make sure there are no blood clots.  Other than that everything was good.   They told me to stay off my feet until I had the scan just to be safe so I spent the afternoon laying around.

Colin ordered a pizza for lunch so we had pizza and fries.  

I went for my scan and the doctor said there were no clots and everything looks good.   Thank God!  I spent the evening laying around.  My pain was really bad and I was having a hard time moving around.  I had a rough night last night with the pain and am hoping that it subsides.  Hopefully today will be the day.   Have a good one.  I will post more later.

Saturday May 28

It was a pretty uneventful day.  We were up early.   The doctors made their rounds early.  Everything looked good on my labs and my they are still pleased with my progress.  I'm still having a lot of abdominal pain.  

I ate breakfast.   Colin got pastries from the bakery for Dr. Cruz for breakfast.   Dr. Cruz came in to the room and ate his breakfast and hung out for a while.   He was telling us about his life in Brazil vs the US.   It was a nice chat and we enjoyed his company.   He said I'm doing really well and the first six months are going to be a roller coaster.   He doesn't want me to get my hopes up or get discouraged when things go wrong because it's going to happen.  

He left and Colin and I went for a walk.  We had lunch and watched tv.   After lunch we went for another walk.  I was lazy the rest of the day.  My pain was getting worse.  I had dinner, went for a walk and turned in for the night.

Saturday, May 28, 2016

Friday May 27

It was a really uneventful day.  Woke up and ordered breakfast.   After waiting an hour and a half with no breakfast tray, we decided to walk down to the cafeteria so Colin could get something to eat.

I ended up grabbing a breakfast sandwich there with some home fries and an orange.  I ate about half my sandwich and hash browns and I split the orange with Colin.   The orange was AMAZING!!!   I haven't had an orange in over two years!!!   It felt really good.

We got back to the room and the doctors were waiting outside the door getting ready to make their rounds.  My electrolytes and a couple other things were low so they ordered me a bunch of iv replacements.  

The nurse started hanging my replacements as soon as the doctors left.  I was hooked up to so many cords and iv's that I looked like a marionette.   I felt like someone could pull the strings and I'd be their puppet.  

I was super excited for lunch.   The cafeteria had a pasta bar today and I had been craving pasta.   It's not something they offer on the menu.  We went to the cafeteria around 1, and they were almost completely out of everything.   I think I was the last person to get some.  I had spiral pasta with marinara sauce.   It was so delicious!  

We went for a walk after lunch.  Then laid down to take a nap.   I wasn't able to sleep but Colin took a short nap.  My iv was going off left and right.   One thing would finish and another one would need started.   It was never ending all day long.

Colin left around 4.   I put on a movie on tv.  I ordered dinner and just hung out.   After dinner I walked down to the vending machine and got a hot chocolate.  I laid down and got ready for bed.   My favorite nurse was on for the night so I was excited about that!!   

My pain was bad all day again.   The doctors aren't sure what's going on so they are probably going to send me for a ct scan tomorrow to be safe.   Today is going to be a better day!   I will update later!

Friday, May 27, 2016

Thursday May 26

Woke up early as usual.  Ordered my breakfast.  I had cereal, mandarin oranges and a small blueberry muffin.   It was pretty delicious.

Right after breakfast Colin and I received bad news.   Our friend Josh made it through the night but passed away in the morning.  He put up a good fight but is no longer suffering.   His family is devastated but are relieved that there is no more pain.   It's really sad how things can take a turn for the worst when it comes to needing an organ and how vital it is to your survival.  If you aren't an organ donor already, please do the research and look into it.   There are so many lives that you can save.  It's amazing what they can do.

The rest of the morning was pretty somber.  We had a little good news.....my favorite nursing assistant came in to my room to tell me she passed her boards!!!   She had just gotten an email and was super excited!!   To celebrate, Colin went and grabbed a pizza for us for lunch and some gelato because that's her favorite.   She was super excited.

After lunch we took a walk for a couple of laps.  We watched tv and hung out for the evening.   I ordered dinner, ate and went for another walk.   After that I got ready for bed and just relaxed.   I am still having a lot of pain in my abdomen.   They think it's medicine related.  They switched some things around but it's going to take a couple of days until we know something.   I am going to try and move around a little more today to see if it helps.   It's supposed to be nice so we are going to go outside.

I will post more later.   Have a good day!!

Wednesday, May 25, 2016

Wednesday May 25

Was taken bright and early around 7am this morning for my scope and biopsy.  They did the scope and everything looked good as far as they could see.

I was back to my room by 9:30.  I had some pudding and hot chocolate for breakfast.  After breakfast we went for a walk and sat outside.   It was really hot out. We came back in and I worked on the computer and started organizing emails for the golf tournament.  

Lunch time came around and I had some soup and pudding.  Pretty boring.  After lunch we walked a couple of laps.   All day we have been anxiously awaiting the results of the biopsy.   Still nothing.  I worked on the computer some more. 

Around 4, Dr. Cruz came in and told us that the biopsy results are back and all the samples were normal!!!!   No signs of rejection!!!   I was so happy!!!!   Colin was so relieved.  We have been stressing over this for days.   I had a light dinner of a turkey and mashed potatoes.  I am having a lot of pain because of the scope.  My stomach is distended and I am having horrible spasms.  Hopefully they subside tonight.  

On another note....we met a wonderful family while we have been here at the hospital.  The patient was doing ok last week and moving around on his own.   Today they are giving him days to live.  He went downhill really quickly.   He is the sweetest kid ever and his family is amazing.   Please take the time to say a prayer for him tonight that an organ comes available.  He is in dire need and may not make it to the weekend.  He and his family need us right now.   Thank you!!!

I will be in the hospital a few more days for observation.  I will keep you updated.   Have a good night.  

Tuesday, May 24, 2016

Tuesday May 24

Was up early.  I got showered when I woke up so that I was clean and ready for my scope.  Originally it was scheduled for 8:30, then they changed it to 9:30.   The doctor made his rounds around 9:30 thinking I already had it.   They called down and were told that they couldn't fit me in until the afternoon sonthendoctor cancelled it.   I have to go tomorrow morning now.   So I had to go the day today without knowing anything.  

The labs they took all looked good.  So that was a positive.   

Colin got me hot chocolate and some pudding for breakfast.   We went for a walk down to the gift shop.  We came back to the room and paid some bills and got caught up on the mail. 

I went with him to the cafeteria to grab something to eat.  We came back to the room and I ordered soup for lunch.  I ate and we started doing more emails and lists for the golf tournament.  

Colin left around 4 so he could get a haircut and I ordered my dinner.  I had to eat light today so I just had soup again.  After dinner I took a walk and then I came back to the room and kept sending emails and filling out online forms for the golf tournament.  A lot of them are a long shot but it can't hurt to try.  

I worked on the emails until about midnight.  Now I'm going to lay down and go to bed (hopefully).  I will post more tomorrow and possibly have some answers by then.  Sweet dreams!!

Monday May 23

Woke up and showered.  Got dressed and tried to prep myself for the day.   Around 9 they came to get me to take me for my biopsy.  We were taken to the GI lab and I was taken back pretty much immediately for the procedure.  I woke up in recovery with Colin already in the room.  We were in recovery for a little bit and then I was back in my room by 10.

Colin ran to the cafeteria and got me breakfast.  He got me oatmeal and a banana.  After I ate we did a couple of laps on the floor.   We came back to the room and watched tv.  
 I got out the laptop and started blasting out even more companies for the golf tournament.  I am sending emails to all kinds of corporations hoping someone will come through with donated items, gift cards, etc.  I am hoping all my hard work will pay off.  We are soliciting anything from hotels to give overnight stays to umbrella manufacturers for golf umbrellas.   I figure the more giveaways we have the better.

We will see!!!  It gives me something to do.   After I get through my corporate list I'm going to get started on local companies.   That's going to be a lot harder for Colin and I because we would rather do it face to face but because we are in Pittsburgh it's going to be a little more difficult.  

Around 3, Dr Cruz came into my room with Ahmed.   He told us that there was some abnormality in the sample they took so they need to repeat the scope and biopsy.  They rescheduled it for tomorrow (Tuesday). They ordered a bunch of additional meds for anti-rejection as well as some more antibiotics.  One of the meds required blood pressure checks every half hour for 6 hours so I didn't get any sleep.    It was a little upsetting to me and I stressed over it all night.  I'm not sure if it was the medications or not but I was in excruciating pain in my abdomen for hours and just couldn't get ahead of it.  I was in tears several times because I just couldn't handle the pain.

 Around 2am, Dr Cruz saw my light on in my room so he stopped in to check on me.   He said not to worry and dress over it and that he isn't convinced that there is an issue because they only took one sample instead of several so he's going to have them take 5 when they redo it.  I felt better after speaking to him.   He has a way of keeping me positive and feeling better about things mentally.  It was a very long, sleepless night....

I was up until Colin came in the morning.  

Sunday, May 22, 2016

Sunday May 22

I actually slept a little better last night.  I probably got about 6 hours of sleep off/on between interruptions.  Not too bad.  

I was up and moving around 7.  I ordered breakfast.  I had half a ham and cheese omelette and some mandarin oranges.  I also had some hot chocolate and orange juice.  

After breakfast we walked a couple of laps on the floor.  We went back to the room and waited for the doctors to make their rounds.   Colin stopped at the bakery on his way in this morning because it is one of my favorite nurse's birthday.  He got her cupcakes that the bakery was able to shape into a syringe and wrote happy birthday on it.  He also got a couple of sticky buns and some treats for Dr. Cruz for breakfast.  
 

When Dr. Cruz came in he said that all my labs were good this morning and that we just needed to hang out until my scope tomorrow.   Colin gave Dr. Cruz his tears and he was really excited.   He even had one of the nurses hide the box until he was done making his rounds.  It was kind of funny.  It's not much and we are still trying to figure something else out but how do you repay someone who saved your life!!  A couple of breakfast sweets is nothing in comparison, but we just wanted him to know that we appreciate everything he does for us.  

The tests showed no virus so that's good.   We are still waiting on the results of the Rhoda virus test.  They said it will take a couple of days for the results of that one.  Pray that it's not that because it's life-threatening in a transplant patient.  Hopefully we will know something tomorrow. 

For lunch, Colin went to Qdoba and got me a beef burrito.   It was basically a burrito with rice, beef and a tiny bit of salsa.  It was really good.  I also had one of the cupcakes Colin got for Diane's birthday.  It was even better!!!  After lunch we walked a couple of laps. We came back to the room and both took a nap.

For dinner I ordered grilled cheese and chicken noodle soup.  I was told to eat light for dinner because I have my scope Monday.  I can't eat or drink anything after midnight.  I'm currently laying in bed and watching House Hunters.  I'm going to chill out the rest of the evening because I've been having stomach spasms all day.  Good news is- no fevers all day long!!   The antibiotics have been working.  I will update tomorrow after my tests.   They aren't sure what time I'm scheduled for.   Usually it's early afternoon but we will see.   Have a good night!   Sweet dreams!!

Saturday May 21

Woke up early when they did my bloodwork at 4 and was unable to go back to sleep.  Colin came in around 6 and we watched the news.  

I ordered my breakfast.  I had Frosted Flakes, yogurt and mandarin oranges.  I was able to eat all of it.

After breakfast I was able to shower.  It felt great!!  After my shower we went for a walk and waited for the doctors to make their rounds,   All my labs looked pretty good.  I got a lecture about not drinking enough water.  It's so hard for me and I can't say why.  I have never been someone who drinks a lot.  Going from not drinking for over a year to being told to drink eight glasses of water a day is really difficult.  A lot of people don't understand but it's really hard.  I keep trying to remind them that I was on tpn and iv fluids and limited to what I could drink by mouth.  Not exactly something I can change overnight.  I'm doing my best to drink and I really am trying.  

I spent the afternoon working on some stuff for the golf tournament and trying to get sponsors.  I started compiling some lists of companies for hole sponsorships, product donations, raffle items, gift bag donation items etc.   we have a lot of work to do.  It's in August but that will be here before we know it.  

We went for another walk after lunch.  I laid back down after the walk and watched a movie.  I don't remember the name of it but it was a cute movie.   After dinner The Blind Side came on, one of my favorite movies ever.  So I had to watch it.  I pretty much stayed in bed the rest of the evening.  

They didn't get any of the test results back today.  The doctors are hoping they will be back tomorrow.  That was my uneventful day.

Friday May 20

I know I'm a little behind.   Didn't mean to worry anyone.   Today was an ok day.   I had a fever the majority of the day and it spiked a little.   It was 101.7 at one point.   Dr. Cruz was in the room when I took my temp and he was perplexed.

He put in for a couple of tests to check for different viruses including the cold virus and Rhoda virus which can be really dangerous.  He also scheduled me for iv Tylenol and antibiotics via iv 3 times a day.

I walked a little and was able to eat.  I wasn't feeling all that bad.  Just tired from not sleeping.  I took a nap in the afternoon and woke up soaking wet so I think at that point my body broke the fever.   I spent the evening in bed and just watched tv until I fell asleep.  The nurse woke me up around midnight to do the virus swab.   It was a long q-tip type of thing that she had to shove far up my nose and swab.  It felt like she was poking out my brain!!  They said it will take a day or two to get the results back.  Hopefully everything comes back negative.

Friday, May 20, 2016

Thursday May 19

Happy Birthday to my sister Amber.   She is the best sister anyone in the world could ask for.  I couldn't have gotten through all of this without her.   Even though she lives a busy life with her family, job and overwhelming life she is always there for me.  I love you Amber and wish you all the best in your life.   You deserve it!!!

The doctors were really happy with my progress today.  My labs looked good and I was feeling pretty good when they made their rounds.  Colin and I took several walks.   One of which was outside to sit on the bench.   It was beautiful outside.  

He left the hospital around 3 to go home and vacuum and dust since he's not allowed to do it when I'm around and then he went to dinner with some friends to get out a little bit.  The aide came in to take my temp around 3:30 so they could hang a bag of medicine and my fever was back.   They took my temperature six times with three different machines to make sure.  They told the doctors and gave me some Tylenol.  My temp ranged from 100.3-100.7 between the different thermometers.  It slowly started to go down in the next hour with the Tylenol but hovered in the 99.7-99.9 range throughout the night.   They have no idea why I have the fever.   They are still waiting to get the blood cultures back and see if they have grown anything.   They are hoping to get them back today.  In the meantime they are treating me with antibiotics.  

Later in the evening around 5:30, I walked over to the other hospital around dinner time to get a soft pretzel.   That's what I had for dinner.  After dinner I just relaxed and watched Chopped on tv.  I also caught up on phone calls.  I talked to Mom and Dad, Amber, Shawn, Courtney and Cyndee.  Everyone seemed to be calling me yesterday.  I was on the phone for a couple of hours.  It was nice catching up with everyone though.  

They gave me all my nighttime meds around 10 last night and then I attempted to get some sleep.  I was up off/on all night because they were hanging different meds in my iv so I didn't get much sleep.  Hopefully we will have more answers today.  I will update later.   Have a good day!!

Wednesday, May 18, 2016

Wednesday May 18

Had a really rough night.  Woke up in a lot of pain.  I was up most of the night uncomfortable.  We got ready this morning and went in to clinic at 6.  I had a fever when we got there.   

They did my labs and the doctor ordered a ct scan to rule out any major complications.  They decided to admit me for observation because of the fever.   The good news is that the ct scan was clear and all my labs were good.  My potassium was low so they gave me a bag of potassium.  They are also gave me fluids.  

They aren't exactly sure what caused the fever but my temp is back to normal now.   I'm really hoping this is just an overnight thing and I won't have to stay longer. Please keep me in your prayers that this is just a minor setback and I can go home tomorrow.   I'm exhausted so I'm going to attempt to get some sleep.  I will update tomorrow.   Have a good night!!

Tuesday, May 17, 2016

Tuesday May 17

Today was pretty uneventful.

The highlight of my day was that I was able to shower!!!   My first shower in over two months.  It felt so good!!!   

After my shower we went to eat n park for breakfast.  I had a ham and cheese omelette and hash browns.  We stopped at the store and Colin ran in to grab another watermelon.  

We got home and Colin finished watching a movie he started last night.  I just relaxed on the couch with my eyes closed.  After the movie was over we started working on a power point for the golf tournament.  It's in August but is going to be here before we know it.  We finished it and sent it to my friend Herb to fine tune it for us.   He's awesome and is able to do a lot graphically.  Not to mention he is the biggest golf fan I have ever met in my life!!!  

I heated up the leftover rigatoni for lunch and we are.   After lunch I took a short nap.  When I woke up we watched tv until dinner.   Colin made dinner.  We had chicken nuggets and mashed potatoes.  I had a slice of watermelon which was actually really good for it not being in season.  We have been watching my favorite show all day....Chopped!!!   They are having a marathon.   I can't wait until 8 because the season premier of Chopped Junior is on.  It's my favorite.   Those kids cook better and are more creative than the adults at times.  I have an hour until it starts.

We have clinic tomorrow at 6 so I'm going to go in and lay down in bed at 8.  Hopefully my appointment goes well tomorrow and we get good results back from my biopsy.  I have to get an infusion tomorrow of anti-rejection meds which takes about three hours and takes a lot out of me so I'm going to hopefully get some rest tonight.  

Have a good night!!   Sweet dreams!!!

Monday May 16

Woke up and went in to clinic at 6.  They did the labs and we hung out for a couple of hours until the doctor made his rounds.   Dr. Cruz stopped and looked at everything.  While he was there he decided that the majority of the stitches and staples could come out.   So....within two minutes I was laying in the bed and he was cutting the stitches and pulling them out.   Apparently I heal really well so it was a little more painful than expected but Colin let me squeeze his hand and I worked through it.  After the majority of the stitches were out Dr. Cruz pulled the staples.  It wasn't as bad as the stitches but still not the most comfortable feeling.  It was pretty awesome making that step and one less thing for me to stress over.  I'm glad he just did it and I didn't have the anticipation of it coming.   For those with a weak stomach, scroll past the photo.  It is pretty gruesome.   
 

This is my beautiful belly/roadmap as I like to call it.

We received some more good news at the appointment.  I have two bags of tpn left and when I'm done with those I'm done with the tpn!!!   No more hooking up to cords for 12 hours a night!!!   The rest of my labs looked really good and they don't need to make any other changes.  

My biopsy wasn't scheduled until 1 so we had to hang out until they were ready for us.   The nurse called down and asked if they could take us early but they were really busy and told her no at first.   They ended up calling her around 11:30 and said to send us over and they would take us.   We went to get the scope done and ended up in the waiting room for an hour and once I got back to the room and I was ready for the procedure we waited another hour.  I didn't end up going for the procedure until about 1:30.  

They said everything looked good on the camera.  I was in a lot of pain afterward.    So much pain that they ended up sending me for an X-ray just to make sure nothing was wrong.   There was a lot of air used so my intestine was just really bloated.  

We left the hospital and stopped at TGI Fridays to grab dinner.   It was 4:30 by the time we got there.   We had a really long day.   We were at the hospital at 6 and didn't leave until around 3.  We got home and rented The Revenant.  I fell asleep (surprise, surprise) and woke up when it was time to take my night time meds and put on my tpn.  I went to bed around 8:30.  We have off tomorrow.  I will post more later.   Have a good day!

Monday, May 16, 2016

Sunday May 15

Woke up and got breakfast.   I had oatmeal and a piece of toast.  After breakfast I just hung out and watched mom and dad get packed up and ready to leave.   They left around 10.  We had a good weekend and it was great having them come for a visit.  

I was pretty much a bum for the morning and most of the afternoon.   For lunch I made myself some leftover rigatoni.  Then I had some frozen yogurt.  After lunch I took a short nap.  Colin got home around 2.  When he got home we talked for a little bit and watched tv.  We decided to go for a little walk since I hadn't really done much that morning.  

We left the apartment and started walking the trail.   We didn't get very far when the sky opened up and it started a mix of hail and sleet.   We turned around and went back to the apartment.   The weather was crazy.   It got really cold really quick.

When we got back to the apartment we watched tv.  I got up and made dinner around 5.  I had some ramen noodles and I heated up leftovers from Linghorn for Colin.  After dinner we watched more tv.  I was just relaxing.  Around 7:30 I started all my night time meds and we got ready for bed.  I went into the bedroom around 8 and was asleep by around 9.  I had a pretty good day.  Not too much pain and was able to eat well.  I was up and down a lot throughout the night.  I woke up bright and early this morning for clinic.  Hopefully everything goes well.  I will post more later.   Have a good day.

Saturday May 14

Woke up at 2am.  It was a horrible night's sleep.  I played on my phone and laid in bed until Mom and Dad woke up around 7.  

When they got up we went to IHOP for breakfast.   I had a third of my Dad's Ham and Cheese omelette, a little bit of hash brown potatoes and a third of a pancake.  I also had some hot chocolate which I must say..... IHOP has the best hot chocolate ever!!!

After lunch we went back to the apartment and I rested for a little bit.  Before lunch mom and I ran to Target so I could get TV trays to make it easier to sit on the couch and eat and I needed a new charger for my iPad.  Then we stopped at the grocery store to get stuff for lunch and dinner.

We went back to the apartment and made lunch.  I had pierogies and some frozen yogurt.  After lunch we put on the movie Sisters again since I fell asleep watching it yesterday.  When it was over, mom started dinner.   We had rigatoni with meatballs.  I ate noodles and sauce (no meatballs).  Then I had an ice cream sandwich which was AMAZING!!!

After dinner we watched tv and I did my evening meds and went to bed.  Pretty good day all in all.


Saturday, May 14, 2016

Friday May 13

Had my clinic appointment this morning.   Everything went really well.  They are very happy with my progress.   My labs all came back good and they took me off another medication.  They did up my prograf pill for the weekend and changed my steroids back to a higher dose again.   I go for another scan and biopsy on Monday so hopefully that will all work out ok.  They gave me the weekend off and said I don't need to go in to clinic so I'm going to do my best to enjoy the time.

We got home from my appointment fairly early.  We were home by 10.  It was a nice early day.   Colin packed up and got ready to go to Lancaster for a visit.  My parents decided to come out this weekend to see me and I haven't seen my dad in what feels like forever so I'm super excited!!!  

Before Colin left he put out and organized all my meds for the weekend so I wouldn't have to worry about it.   He's very thorough when it comes to that stuff.  He doesn't miss anything which is a good thing because if it was up to me, who knows if I could get it straight.   He may be a pain in my a..$$ half the time but I know he means well and he's doing it all for my well being.  We have been on each other's nerves the past week (we are spending 24/7 together) and it's been hard but we love each other and I know he's only looking out for my best interests.  I love you Colin and appreciate everything you do for me even though I may not always say it or show it in the best way.

Mom and Dad got to the house a little after 11.  We had lunch - chicken salad and watermelon and watched tv for a little bit.  I asked Dad to install a new shower head for me that is one you pull off and has a sprayer because I'm still not allowed to officially shower yet.   He took me to Lowes and we got one.   He had it installed in 10 minutes.   It will make my life so much easier!!!   Thanks Dad!!!!

My cousin Leah and her family were in Pittsburgh at a museum today and she reached out to see if they could stop for a visit.  They came around 1 and stayed til a little after 3.  It was so nice having visitors and seeing family.   It really makes me feel loved knowing so many people care.  

After they left I took a quick nap.  I woke up and we went to dinner.  We went to Longhorn.  I of course ordered chicken and a potato.  I ate about a third of it.  We got home from dinner and put in the movie Sisters.   I watched about a third of it and then fell asleep.   Apparently it was hilarious.   Dad said Mom went into an uncontrollable laughing fit in the middle of the movie and she couldn't stop.   I'll have to watch it again after they leave and finish the whole movie.  

By the time I woke up it was time for my evening meds.  I had a little oatmeal and took all my pills.  I made my sleepy time tea, took my swish meds and went to bed.  It was a very good day.  A little exhausting but I need to work up my energy little by little.  Every day is getting easier.  I only had to take pain medicine once today.  I'm hoping that things will continue to progress the way they are and pray that I stay on the right track.  I've been up since 2 am and don't see myself falling back asleep so hopefully today won't be too bad.  I will post more later.   Have a good day!!! 

Friday, May 13, 2016

Thursday May 12

Woke up and had Apple Jacks for breakfast.  I still had a bunch of bags and boxes packed for us to go to Lancaster Easter weekend (which didn't happen bc I got my transplant).   So I worked up the motivation to organize and put everything away.   It took me about an hour.  Afterwards I laid down for a little bit to muster up some energy.   Colin went into the bedroom and must have fallen asleep.  

He came back out around 10:30 and we got dressed and ready and ran some errands.  We went to Dick's so I could get a hat.  My hair is falling out and thinning from the steroids and my scalp is being exposed slightly so I don't want to get sunburn on my head.  I just got a plain white under armour hat with black lettering.   That way I can wear it with anything.  Then we ran to Target.  We grabbed a couple of household things and some gift bags for gifts I'm sending home with Colin that I was supposed to take with me Easter weekend when we went home.   After Target we went to Burgatory for lunch to see our friend Jimmy.  I got a chicken breast on a pretzel roll with some French fries.  It was really good.  

After lunch we ran to the grocery store and grabbed a few things.  We didn't need much.  We got home and I laid in bed and took a nap.   Colin said I fell asleep right away.  I must have slept about an hour or so.  I stayed in bed and watched tv for a little bit.  I worked up the motivation finally to get out of bed and I organized and cleaned out my ostomy supplies.   I sent the box of extras with Colin so he can give them to his mom for her client.  I can't use them anymore and the supplies are really expensive.  

After that Colin made me chicken salad for dinner and I put on my tpn for the evening.  I finished straightening up and got ready for bed.  

We have clinic today so I will update afterwards.


Thursday, May 12, 2016

Wednesday May 11

Today was a very long day but was good all in all.  

We got up extra early and went in to clinic.  We stopped and got donuts for the girls on the way since we hadn't seen them in a little while.  When we got there they did my labs and took my vitals.  Everything looked ok.  

After that they gave me my anti-rejection medicine which runs over three hours.  They had to give me Benadryl as well as part of the treatment so I fell asleep for a little bit.  The doctors made their rounds and were very happy with my progress.  Dr. Cruz changed some of my medicines around and took me off of a couple of things temporarily to see how I do without them.  He also decided to cut my tpn back to every other day instead of daily.  I didn't have to do my tpn last night.  It felt so good not being attached to a pump and wires all night long.  

He also advanced my diet a little bit as well.  Still low fat but said we can add some fruits to it as long as they are soft.  I was taken to the gi lab for my scope and biopsy and everything went really well.  They said everything looks great.  There is no sign of rejection.  We should have the actual biopsy results back tomorrow but the scope was perfect.

We left the hospital happy with the outcome.  I was completely exhausted.  On the way home we decided to stop and grab something to eat since I hadn't eaten.  We stopped at Red Robin.   My first meal out in over a year!!!   I got pretzel bites and a grilled chicken sandwich.  I only ate about half but it felt really good to be able to order something and actually eat it!!  

We got home and I laid down.  I stayed on the couch until it was bedtime.   The day took a lot out of me.  No clinic today so who knows what I'm going to get into.  I will post more later.   Have a good day!!

Tuesday, May 10, 2016

Tuesday May 10

Was up early and had oatmeal for breakfast.  Took my meds and got dressed and cleaned up for the day.  Stayed on the couch and watched tv for a little bit.  Got the motivation and pulled myself together to go through the mail and organized and paid bills.  It took a couple of hours to do.  Needless to say I hadn't been paying too much attention to them the past couple of weeks.

I had a soft pretzel for lunch and Colin and I walked to the mailbox.  We got the mail (and more bills) and then we went to the grocery store to grab a couple of things that we forgot yesterday or didn't realize we were missing.  

We got home from the store and took a nap.   Got up and had dinner.  I made ramen noodles and had some oranges.  After dinner we watched a movie and I put on my tpn since we have to be in clinic early tomorrow.  I'm going to be heading to bed soon.  I'll update after my appointment tomorrow.  I have a scope and a biopsy.  Wish me luck and send lots of prayers!   Until tomorrow.  Goodnight!

Monday May 9

Today was a really good day.  I only woke up once in the middle of the night for pain medicine.  I had to get some nausea meds a couple of times but all in all it was a good night.

When the doctors made their rounds, Dr. Cruz was extremely pleased with my progress.   He hadn't seen me in a week because he was on vacation.  He went over all the labs and said everything looks perfect!!!  He set us up for discharge and changed a couple of my medicines around.  

It took a while for discharge because they had to get all my new prescriptions together and they had to set up my tpn delivery etc.   they discharged us finally around 3:30.   Traffic was horrible on the way home.  It took us an hour to get home.  We stopped and got movies on the way home and Colin ran into the store to grab a couple of things we needed.  

Once we got to the house, I laid on the couch and chilled out.  Colin went through and sorted out my medicines.  He had to change a bunch around.  It took him a while to do.  After he was done he made me dinner and cleaned up all the stuff from the hospital.  I cat napped while he was working hard.  

They delivered my tpn around 6:30 so I got it ready and put it on.  I took my evening meds around 9 and Colin tucked me in to bed.  We were given a break from clinic today so we can lounge around this morning.  I will post more later!!!   I'm happy to be home!!!!

Sunday, May 8, 2016

Sunday May 8

Happy Mother's Day!!

Today is a hard day for my family since we just lost Honey last week.   She always came to our house for Mother's Day and spent the week with us.  This year is tough because we miss her so much already.   She was such a special person.   The best wife, mother, grandmother anyone could ask for.   She was so patient, kind, witty, sarcastic, loving and so much more.   We are always going to hold a special place in our hearts for her.  I also want to wish my mom a Happy Mothers Day.   I know today is hard and she probably doesn't want to celebrate but she is a very supportive loving mom who I wouldn't trade for anyone.   I love you to the moon and back!!!   Happy Mothers Day!!!

I felt a little better this morning after my horrible night last night.  I got up and ate breakfast and walked a couple of laps around the floor.  I took a nap after I walked.   Colin and I walked over to the cafeteria for lunch and I had a soft pretzel and some ice cream.  It was a really long walk but I made it most of the way there.  He pushed me part of the way back because a lot of it is uphill.  

We got back and I layed down and watched tv.  Colin took a bit of a cat nap and then we got up and walked a couple of laps again around the floor.

Colin left to go get a haircut.  I ordered dinner.  I'm getting ready to go for another walk and then I'm done for the evening.   

The doctors said all my levels are good today and they are still extremely happy with my progress.   Dr. Cruz will be back tomorrow and so will Bill so I'm anxious to see what they have to say.  I will post more after tomorrow.   Have a great night.   Sweet dreams!

Saturday May 7

Today was a pretty good day.  I had some pain but it's getting better.  The doctors are really happy with my progress.  I should be able to get out of here Monday or Tuesday depending on my pain and the meds.  

My friend Matt came to visit for a little bit today.  It was nice having a break in the day.   We went for a walk outside and enjoyed the sunshine for a little bit.  It was gorgeous!!  

Colin ended up leaving with Matt to go to a food truck round up where they have a bunch of different food trucks and you can try different things.  They also had some breweries and different beers.   

While he was gone I stayed here and colored.   A little uneventful but it kept me busy for a couple of hours.  For dinner I ordered lasagna.   Big mistake.   I was up sick to my stomach all night long.   I only ate a quarter of it but that was enough to do it.

Hopefully tonight will be a better night.  I will post more later.  Goodnight.

Saturday, May 7, 2016

Friday May 6

Mom went home today.  She got up early and was home by 9:00.  Colin came home from the mountains. He was home by 11:00.  He showered and came in.  He was here when the doctors made their rounds.  

Dr. Gonoza decided to take out my other drain because it was starting to tear anyway.  They gave me pain medicine and took it out.  One more step in the right direction.   They also advanced my diet slightly so I can have a little more variety.  

Removing the tube was pretty painful so I didn't do much in the afternoon.  Colin left around dinner so I just hung out in my room and relaxed.  Colin went home to help a new neighbor move in and to do some laundry.  

I went to bed around 9 and had a pretty good evening  considering how eventful my day was.  I only woke up three times throughout the night which is pretty good.  I will post more after today.  Have a good day!

Thursday May 5

Had to get up bright and early to get a scope and biopsy today.  They were able to put me under anesthesia for the procedure.   It took about three hours until all was said and done.

I spent the rest of the day in and out of sleep.  I was completely exhausted.   I was in a lot of pain after the procedure from them blowing air into my intestines.  

Everything looked good in the scope.  They are just waiting to get the actual biopsy results back.

Friday, May 6, 2016

Wednesday May 4

Had a pretty hectic day.  Still having pain and nausea.   They can't really explain why.  They sent me for a ct scan.  It took a couple of hours.  

I was in recovery for about an hour until they took me back to my room.   I laid down for a little bit.   They brought me my lunch but I didn't eat much bc my stomach was upset and nothing on my tray looked appealing.

A little while later I decided I wanted a soft pretzel so mom and I walked to the cafeteria in the other hospital.   I had a soft pretzel and some ice cream. Very good!!

We got back to the room and chilled out.  She left around 4 to run some errands and clean up.  I watched tv and hung out until bedtime.   I fell asleep by 10.

Tuesday, May 3, 2016

Tuesday May 3

Had a rough night of pain and nausea.  I wasn't able to eat my breakfast, lunch or dinner.  I was too nauseous. The doctors are being cautious so they are keeping me a few more days until the nausea and pain are under control.

Mom spent most of the day at the hospital with me.  She was having a rough day and so was I.   We both spent a lot of time crying.  It was kind of a sad day.   We did go for a nice walk outside and sat in the garden for a while.  We laid in bed and watched a movie together on Netflix.  I'm still having a lot of pain but it's slowly getting better so we are taking things slowly.  I'm back on a full liquid diet so I have a little more variety besides the clear liquid diet.  They are slowly advancing me back to "normal" foods.  

Tomorrow is a new day.   Hopefully I can get some rest and start tomorrow new.   Have a good night!

Monday, May 2, 2016

Monday May 2

I'm still in the hospital.  My prograph levels are about 3 times that they should be.   That's my anti-rejection levels in the body.   They are going to have to monitor me until it's under control.  My symptoms are pin, nausea, shakes/tremors, itchiness and headache.  It's really uncomfortable more than anything.  It's not life threatening and everything else looks great on my labs, etc.  

Colin left to go hunting.  He needs a break away.  Mom is coming today.  She got to the hospital aroun10 and stayed with me for the day.  She's going to be with me until Friday or Saturday.  It will be a nice change of pace.  

I am going to try and be a little more responsible and make sure I'm updating the blog.  I will do my best to make an effort.  The evenings are pretty difficult for me so I don't update out of laziness.  

Hopefully I will be discharged tomorrow.  Until then....good night.   

Sunday, May 1, 2016

Sunday May 1

Sorry it has been so long since I've posted.   I've had a long couple of days.   

We were discharged from the hospital on Wednesday.  We got back to the apartment around 3.   It felt so good to be in my own home and in my bed.   We didn't do much except relax and get settled.   We put on my tpn around 5 and watched tv until I took my 8pm meds.   After my meds I went to bed.

Thursday we woke up bright and early to get into clinic.   They did my labs and checked everything over.   Everything looked good.  We got home around noon.   When we got home I laid on the couch and Colin brought me lunch and gave me my meds.   We just sat around because doing the steps and walking in and out of the clinic took a lot out of me.  We did the same routine.   Put on my tpn.   Watched a movie on Netflix and went to bed around 9.   I started having increased pain and nausea.  

Friday we once again got up and went to clinic in7west.  They did the lab work and said everything looks good.   My blood pressure is really high.  They had to monitor it several times throughout the day.  It finally came down in the afternoon.   I had to get a biopsy.   They decided to put me into a twilight to avoid the trauma I went through the previous scope.   Everything looked Good.  The biopsy results should be back Monday.    

 Honeys viewing was today.  I really wanted to be there to say my goodbyes.  I am really going to miss her.  She was the best grandma in the world and would do anything for you.   She was always alert and knew what was going on to the very end.  It was a bitter sweet day.  I know she lived a happy life and had her wits about her the whole time.  Mom and dad were there when she took her last breath so she got closure.  

Saturday we woke up and went in to clinic.  They drew my labs and everything looks good.  I was really feeling out of sorts.  They did my labs and said everything looks good.   We were allowed to go home. As the day progressed I started feeling worse.   The pain was getting worse, the nausea, I have pain around my drain sites so they took one out this morning.   It didn't feel very good.  We went in to the ER because my symptoms were getting worse.  I was admitted right away.  They have me under observation right now.  I'll keep you posted as to what's going on.

Sunday Mom came to stay with me while I was in the hospital.   Colin left to go turkey hunting for a break so Mom is going to stay with me until the weekend.  She stayed at the hospital with me all day.  Nothing too eventful happened.  I was sick in bed the majority of the day.  She hung out with me and then went back to the apartment to go to bed.

We are still waiting to see what's going on.