A "Dr. Seuss" Kind of Day

Dear Family and Friends,

Yesterday was a LONG, ROLLER-COASTER, FORGETFUL, PEOPLE WATCHING, FRUSTRATING, STRESSFUL, and TIRING day all combined.  Kind of sounds like the beginning of a Dr. Seuss book.  Can you tell I'm tired?  So is Gary. 

LONG, ROLLER-COASTER DAY -- Yesterday was a very LONG, ROLLER-COASTER type of day.  It started out with things forgotten so making things more stressful, but by the end of the day, when we finally got home after 7PM, we did get some good news, the C-Diff test came back negative -- YEAH!  The effects that are left are probably a side effect of some of the medication which is a good thing that it's not contagious (don't need to wear gloves and clean everything Gary touches with wipes anymore), but also not, since the effects continue to deplete Gary's body of fluid and cause other issues.

He still is "fighting" dehydration -- even though he is "floating" as he drinks his 3 + liters a day (Peter put measurements on a gallon water jug so we could make sure he drinks enough), but his body is losing more then it's keeping as you can tell by one example in the previous paragraph.  They did have to IV fluid him again in the Clinic yesterday again.  The great news is he's still out of the hospital, and now it's for the longest time he's out since the transplant.  Also, the doctors do remind us that what is happening with Gary actually happens quite often, especially with a pancreas transplant.  They also remind us that the pancreas and kidney themselves are doing really good.

FORGETFUL -- Our day started with me taking Andrew and Stephanie to school early for Andrew's last AP test that was starting before the bus would get him there.  We got to school and Andrew realized he had FORGOTTEN his lunch -- no problem, I'd drop it off on my way to the clinic.  I got home, did everything that needed to be done before we went to the clinic (we were supposed to get to the lab around 9AM) and packed for our day at the clinic (enough fluids, food, things to do during our wait times, medication for both Gary and myself, lab paper work, lab sample that we needed to bring with paper work, you get the idea) and went on our way.  We dropped off Andrew's lunch at school, and for those of you who are familiar with Chicago traffic, by-passed the beginning of the Eisenhower and chose to get on at Harlem but still were caught in Eisenhower stop and go traffic.  We got to the parking garage at UIC and thankfully found a great spot for us and as we were getting everything out of the van, I realized that I had FORGOTTEN to pack ONE VERY IMPORTANT thing -- Gary's Medications -- We are supposed to carry his list of medications with us all the time, and a day or two (depending how far from home we are) of medication with us at all times.  A transplant patient needs his medications, particularly his anti-rejection medications, at certain times.

I decided that the best thing would be to have Gary go for his blood work alone so I told Gary where he had to go (Registration on 2nd floor, Lab on 4th floor, then back to 2nd floor to walk the bridge to clinic in next building) and I would "quick" -- nothings quick in Chicago -- go home and get the medicine. I knew there should be time for me to do that since the clinic appointment was scheduled for 12PM, so I went on my way praying that everything would go well for Gary.  He is still very weak, so deep down, even though he was at the hospital, I was very concerned about no one being directly responsible for watching him.  As I was on my way back, he called to let me know he was finished with the lab, but wasn't quite sure where he had to go or if he'd gone the wrong way.  This was the first time since surgery that I had left him on his own, so, to be honest, I was very, very nervous about it and had been praying that he would do OK.  You also have to realize that I've been going by all these buildings many times over the past month and he has always entered the hospital from the ER, so his sense of direction in the area is not the same.  What doesn't help, is that the building he needed, says nothing about transplant clinic but only refers to the eye clinic.  He was by the correct building but didn't realize it.

PEOPLE WATCHING -- Good thing I don't mind people watching, because that was the kind of day it was.  You meet some interesting and unique individuals.  The doctors were called into surgery during the clinic time so we waited even longer.  You have no choice but to wait it out, because it is important to keep all your doctor appointments with a transplant.  They need to especially at the beginning, change your medications quite frequently depending on what your blood-work shows.  Also, with Gary's dehydration issues, we'd rather keep him out of the hospital so for that reason, too, you can't leave, plus, as it is, they are overbooked so when the doctors say you have to come in, they are already booking patients double plus.  Yet, sometimes, the wait, knowing how much overbooking is done, is not as bad as a regular doctor office seems.

STRESSFUL and FRUSTRATING -- For me it is very STRESSFUL and FRUSTRATING having to deal with more then one pharmacy and after yesterday, I'm going to work hard at convincing the clinic that for us (and them) it is better to deal with one pharmacy, my local CVS pharmacy.  UIC has several different pharmacies and they do not work as well together like one would think they should.  Depending when a prescription started, depends which pharmacy it came from.  So, it came to a head this week, first a bit on Wednesday, and the rest today.  Usually I think of myself as a pretty patient person who can "roll with the punches", but yesterday afternoon and evening, I kind of lost it you might say.  Each time Gary comes home from the hospital and also when he has clinic appointments, medicines and/or dosages change and new medicines are ordered.  Depending where he is at, depends which UIC pharmacy is used and sometimes they call our local CVS, and sometimes they even double order from two different pharmacies -- no rhyme or reason that I'm aware of to any of this.  Our insurance requires approval on some medications when there are more then four medications but not on others -- lovely system.  Anyhow, to make a long story short, there were some mix-ups and other issues that happened and I'd had it.  One of the nurses even said that WE had TOO MANY pharmacies -- I said NO, I only have ONE pharmacy.  ALL OF  YOU who have been ordering have been doing the ordering from different pharmacies.  You would think that all UIC pharmacies would work together -- they are ALL part of UIC, but no they are separate and can't seem to work together.  In the morning there were no changes to his medications, after the IV, the doctor that was still there decided to change the dose of one medicine that was already in question and order 2 more medicines -- guess what, the orders still were for incorrect dosages, a medicine that had been already ordered and started on Wednesday and of course, the UIC pharmacy couldn't understand WHY I wouldn't want to make a separate trip JUST to pick up medicine at UIC, I mean, the drive is so fun, the parking so simple and cheap, and the location soooooo close to the parking -- Yes, the last sentence is showing the sarcastic side that is coming out in me.  No place is perfect, I know, and I'm far from perfect (see forgetful paragraph).  I can see one thing I'll have to work on this week since last night when I filled Gary's pill box up until his next appointment, I also noticed that some of his prescriptions will have to be refilled in the next week or so and I want to "settle our lives down" a bit if that's at all possible.

TIRING -- Gary fell asleep as soon as we came home.  I heated him up some soup, which he woke up to eat, and then went back to sleep.  I went to CVS to get some of his medication that I needed and then set up his medication for the week and he slept through that.  I was so tired, I finally heated up some dinner for myself after doing these things, and ate at 10:30PM. Peter is at the Cadet Father-Son Camp-out and Stephanie and Andrew were at the boys track meet and then at Timothy to watch the TCS Variety Show and then went out with a few of their friends so I was on my way to bed when they came home.

Today, Gary's so tired that he has slept quite a bit.  He did get a walk in with Andrew and ate a little and drank a lot of his fluid.  I can tell I'm really tired too, and haven't had a lot of energy to do things.  I did start some laundry, and needed to go to CVS again to get another prescription.  I'm glad I didn't have to drive to UIC for it -- I don't think I could have stayed awake for that whole trip.  Will Gary ever have strength back again and will I ever NOT be so tired?

THANKSGIVING and PRAYER  REQUESTS:

I'm so thankful for my children and all they do to help us.  I'm also so thankful to all of our family and friends for their prayers, phone calls, rides, meals, cards, listening ears, telephone calls, words of encouragement, and other many thoughtful gestures that have been done for us.

We're so thankful that the C-Diff infection test came back negative -- hopefully it stays gone and that the other side effects go away.

Pray that the "dehydration" gets better, that we can be able to continue to keep him home.

Pray for patience, especially when the day gets long, and it seems that so many things go different then planned.

Pray that we both have the energy we need, when we need it and to be patient with ourselves when we don't feel we are where we feel our energy levels should be.

I know that this post has been extra long and in some ways I feel like I've maybe put too much "complaining" in, but I want to say again, thank you, everyone, for your continued thoughts and prayers!  We appreciate them and see the Lord through all of you and know that HE is with us all.

Love,

Nelly and family

                  So do not fear, for I am with you; do not be dismayed, for I am your God.
          I will strengthen you and help you; I will uphold you with my righteous right hand.
                                                              ~~ Isaiah 41:10

3 liters of fluid

Dear Friends and Family,

Yesterday was a very busy, long, exhausting day.  The good news -- it was a visit to the clinic and he's still at home.   He is still fighting dehydration, so they did end up hooking him up to an IV for an hour in the clinic and we need to come back again on Friday and they are already saying they will probably need to give him another IV.  They told us that he needs to drink at least 3 liters of fluid a day.  For those who are metric challenged like I am, 3 liters = 12.68 cups, or 0.79 gallons, or 101.44 oz or 6.34 pints, or 3.17 quarts  (all taken to the nearest 100th) -- you get the idea http://www.asknumbers.com/VolumeConversion.aspx is my source for these numbers.  So, we are coming up with "creative" ways to get Gary to drink that much.  One of the biggest goals right now is trying to keep him hydrated enough and home.  The doctors seem to feel that a lot of his blood pressure issues (big drop between sitting and standing), lightheadedness, low grade temp at times, tiredness, and weakness are related to him being dehydrated.  We're still dealing with the C-diff so we are very thankful for the convenience of Clorox wipes and gloves, although I'm sure there are times that Gary must feel like a leper when we are after him to "don't touch that" since we all know that the best defense for us not to catch it and the best defense for him not to keep it is to wipe everything he touches with Clorox wipes.  We also were told at one point to wash his laundry separately in hot water along with bleach to kill the germs.  Tomorrow we will again go down to UIC to spend the day. 

Pray that we can keep Gary hydrated and out of the hospital.  Also pray that the C-Diff will get out of his system and that he doesn't catch it again.

Thank you all for your continued thoughts, prayers, and other acts of kindness.  We appreciate all of you very much and thank the Lord for you.

Love,
Nelly and family

                            For I was hungry and you gave me something to eat,
                             I was thirsty and you gave me something to drink,
                                   I was a stranger and you invited me in.
                                         ~ ~ Matthew 25:35 NIV

It'a Monday, and............We're at Home

Dear Family and Friends,

We're so excited -- It's Monday night and we're still at home!!!  Gary's had a great day overall.  He's drank lots of fluids, ate some food, blown in his spirometer, and taken  two walks -- both good distances since the surgery. It was such a beautiful sunny day to go walking.  He's tired and asleep for the night, but I just couldn't resist posting that it's Monday and we've managed to stay home!  :)

I've also added a separate blog page with pictures from the beginning till now for those who want to see any of them.  I made sure it was ok with Gary that I posted pictures and he was fine with it.

Thank you all again for your continued thoughts and prayers.

Love,
Nelly and family

     Always giving thanks to God the Father for everything, in the name of our Lord Jesus Christ
                                                                  ~ ~ Ephesians 5:20

Some pictures of Gary's Transplant Journey

4/13/13 all hooked up including CPap

4/12/13 after surgery

4/13/12 in recliner for first time

4/14 or 15/13 taking 1st walk outside of ICU room

4/17/13

4/21/13 at home between hospital stays 1 and 2

4/25/13



Room Gary ended 1st visit and started 2nd visit in looking east towards Chicago Skyline

Some of Gary's wonderful nurses

4/26/13 Have IV pole -- will travel

4/26/13 Gary with one of his great nurse techs

4/26/13 all tired out from moving rooms

view looking West from one of the rooms during 2nd visit

view looking NW from room facing West

4/28/13 Finishing final IV before going home 2nd time (4/22-4/28/13)

One of Gary's many wonderful nurses helping get him ready to leave after his 3rd and shortest visit (4/29 - 5/1/13

5/1/13 Ready to go home again!

5/1/13 with one of the many wonderful transport people as we leave the 3rd time 

5/7/13 Our college friend who had a liver transplant about 9 months ago

came to surprise Gary with a visit

Looking South from room he was first placed in on 4th visit on the 8th Floor

Room we spent the most time in on Gary's 4th Stay (5/6-5/11/13) in ICU Step Down looking North

5/8/13  I decorated Gary's whiteboard for his birthday along with a little added help from Stephanie. 

5/8/13 -- Gary's Birthday balloons -- for those who know him they each have significance.

The old Timothy Christian Grade School I got to see on one of my rides to the hospital.  He also pointed out where the old Timothy Christian High School was as well as other places when this area was home to many people that I know.
 

the old Warren Park CRC I got to see on one of my rides to the hospital

Entrance to 7th floor (elevator on your right with one of many hand sanitizers on the floor and in the hospital) -- Family waiting room and Transplant ICU and Transplant rooms  to the right at end of hallway by picture of Walter Payton

Wall in hallway of 7th floor by elevator and Family waiting room

Showcase in 7th floor Family Waiting room
 

From trophy case in family waiting room
 

Walter Payton Trophy from Showcase

From Showcase in Family waiting room

"Tree of Life" by elevators at 1st floor -- people who have donated organs when they died

Plaque about "Tree of Life" Organ Donations

Plaque about young person who's organs were donated

One Month Transplant Anniversary, Profession of Faith, Mother's Day

Dear Family and Friends,

Today was 1 month ago that Gary had the Kidney and Pancreas transplant.  Overall it was a "quiet" day today for Gary.  He seems to be getting better each day with his eating and drinking, we checked his vital signs several times today (standing/sitting blood pressures, pulse, temperature, blood glucose, and weight), he used his spirometer several times, took a long walk for him (around the block), rested in his recliner, took his many pills at the various times that he scheduled for them -- you get the picture.

Today was also the Profession of Faith of our two youngest children.  Gary would have really liked to have been there and we had tried to figure out ways of possibly getting him there with as little exposure to others as possible, but in the end, he realized himself that it would not be a good thing especially since he does experience some dizziness and lightheadedness and had some at home, so, all of us went and left Gary at home by himself with strict instructions as well as one of his favorite TV shows (M*A*S*H) on in the DVD player.  Our church services are video taped, so we ordered one for him.  We, along with several of the other families, served cake to the congregation after the service in honor of kids who made Profession of Faith.

Our Children's Church children also sang in church this morning which they do every Mother's Day.  I play piano for them which I really enjoy.  It's always so fun to see their joy and excitement as well as to hear what they have to say.  They are a good group of prayer warriors when they know that someone is ill or is having surgery and they have such genuine faith.  I often think of the the Bible verse Matthew 19:14.

My children and husband surprised me with flowers today -- I had no idea how they did it, but this morning, they appeared on my kitchen counter with a card signed by all of them as well as Gary.  It was fun to hear what they had done without me even being aware of it happening -- I know it helped that I was busy and tired.  This afternoon, Laura's parents invited those of us who could come (Stephanie, Andrew, and I were able to go) to join them and Bradley and Laura along with Laura's Grandma and Grandpa, for lunch at their home for Mother's Day and Andrew and Stephanie's Profession of Faith.  We had a nice time there too.

We have so much to be thankful for over this past month and we feel so blessed.  Here are a few things that come to mind:

1) The Family that gave us the wonderful gift of their loved one's organs -- their loss was our gain.

2) The doctors, nurses, nurse techs, housekeeping, transport people, meal makers and passers, security guards,  people who greet us and give us our name tags when we enter the hospital and so many others we've encountered at UIC -- each of them plays an important part in Gary's care and healing and each part is important.

3) Our immediate and extended families, friends, our "family" at Faith CRC and also at Timothy Christian School, and neighbors -- we appreciate all of your prayers and support in so many ways.

This only names a few things, but we are so thankful to God for all He has done for us and for the people who have and continue to walk with us on our "journey" as well as the people we have encountered a long the way (and we have met some "interesting" people!).  I've also realized that we are "witnesses" to each of these people.

God has truly blessed us and we say "thank you" for your continuing walk with us on this journey.  Thank you all for your thoughts, prayers, and support for us.

Love,
Nelly and family

                      Jesus said, "Let the little children come to me, and do not hinder them,
                              for the kingdom of Heaven belongs to such as these."
                           
                                                     ~ ~ Matthew 19:14