Annnnddd we're walking!

Stephanie posted the following on Facebook:

"Thanks everyone for all your prayers! Dad is making good progress on his recovery. I got to help him take his first walk around the nurses' station today"

It was sure nice to have Stephanie home for the weekend.

And so we know and rely on the love God has for us. God is love. Whoever lives in love lives in God, and God in them.

~~1 John 4:16

Answer: Surgery at UIC -- Question: How Gary "Celebrated" the eleven month anniversary of his Transplant Surgery!

Gary always enjoyed watching Johnny Carson especially when he would have a Carnac segment, hence the title of this post.

Tuesday morning, I woke up to the sound of Gary vomiting. After trying for most of the day to keep him hydrated, it was decided that we needed to bring him to the UIC ER. We assumed that he was dehydrated, and that more then likely it would be a long night of waiting, and from past experience he would probably be admitted sometime during the night for observation and that Peter and I would be coming home in the forecasted heavy snowstorm.

As the evening went on, they began to suspect appendicitis. They finally admitted and brought him to a room at 5am, but they were not sure what time surgery would be yet, since he had to be fit into the schedule. We all tried to sleep for the next few hours, but as I am sure most of you know, hospital sleeping is not very restful or comfortable.

By mid morning we found out that the Transplant surgeons would be doing the surgery and that they were figuring they would more then likely be able to remove the appendix laparoscopically which would take about 45 minutes to an hour, but if they ran into too much scar tissue, they would would have to open him up, so it would take a little longer.  We did all have a bit of a chuckle that surgery was happening 11 months to the day and almost at the same time as his transplant surgery had happened.

They took him into the OR room about 12:15 PM.  We decided to eat lunch and then wait figuring the surgery wouldn't be long. We were waiting and waiting and having trouble finding out what was going on. After waiting about 2 hours we found out that he was still in surgery but that his surgery hadn't started until 1:09pm.  We started assuming that they must have run into scar tissue and so assumed they had to open him up.

When it started becoming longer, the messages were "he's doing good but still in surgery", but slowly we were being just told "they are still working on him". It was after 6pm when Peter and I were called that the surgeon was ready to talk to us while Gary was being closed.

Surgery ended up being more extensive then originally thought. The surgeon was very good at explaining what all happened and even drew a picture to help especially me, understand more. The inflammation had spread beyond the appendix to the Cecum and surrounding Colon tissue.  Seeing this, they needed to perform a Right Hemicolectomy along with the Appendectomy, which involved taking the Appendix, Cecum, and part of the Colon and then reattaching the remaining portion of Colon to the Small Intestine. The doctor also explained that it had turned out to be very major surgery and possibly rougher on his body then the Transplant Surgery he had 11 months before.  Gary's transplanted Pancreas, which was placed right behind that area, had not been affected, and that his transplanted Kidney looked fine. The doctor also told us that he would be putting him into Transplant ICU rather than the step-down unit as he had originally been placed in and expected to return to. It was still about 1 1/2 to 2 hours before we were able to see him.

Shortly after we saw him, Peter and I went home exhausted. We had no idea what we would find since there had been quite a bit of snow since we came in the evening before so it was a very, very nice surprise to find the driveway shoveled and we could pull right in.  We have wonderful neighbors!!! Thank you so much whomever helped with that!!!

A good friend brought me in on Thursday morning on her way to work in the city, and Peter was able to go back to work.  Gary was in a lot of pain all day and did not seem to have processed all that had happened. In the morning, the nurses were having trouble with the pump that would give him his pain medication and they finally had it working correctly in the early afternoon. I kept noticing that it would stop working every time he would push the button, so I finally asked the nurse he had whether he was even getting any of the pain medication because of the pattern I was seeing. I think she didn't realize that I understood how the machine worked, since she explained that if he would push it before it was time, he wouldn't get any and she didn't seem to understand what I was trying to explain. Shortly after, one of the many groups of doctors came by to see us and I explained again and some of them did understand. Another nurse was able to fix the machine with a "new set of eyes", but as one of the doctors said, he is probably having to catch up in the treating of his pain.  His right lung also partially collapsed so we need to work hard on his breathing as pneumonia can become a complication from that.

Today, Peter brought me in and went into work late. He is looking much better and is not in as much pain, but still has a ways to go. He is doing better at breathing and using his "after surgery blowing machine".  If you've ever had surgery you know how much fun those are when you are in pain, but Gary is slowly getting better at it. They also took him for a CT Scan which really tired him out. This afternoon they had him sitting in a chair to help with his breathing which will help the lung to re-inflate.

Gary is getting better, but his recovery will be longer than initially thought.  He is still in the Transplant ICU, still has tubes and IVs that he is attached to, but he is on the road to recovery.

Some of the things we are so thankful for:

1) We are glad we followed protocol and came to UIC ER so Gary would not have to be transferred to here.

2) We are thankful for the Transplant Team of surgeons which made the long wait even more bearable because we knew that they would be doing all they could to protect the transplanted organs and as we often hear in the ER and have also experienced, "They are very protective of THEIR Transplant Patients".

3) Very thankful for all the thoughts, prayers, words of encouragement from so many of our family, extended family, our church family, and many friends.

4) So thankful that Gary's transplanted organs are still fine and working well.

5) and so many other things that I am sure I am missing.

Thank you once again for "continuing to walk this journey" with us. It means a lot.

 “Come to me, all you who are weary and burdened,

and I will give you rest."

~~ Matthew 11:28 NIV

There's No Place Like Home

Dear Family and Friends,

I had started another post during the day today, but at this point, I haven't finished it, and, I am not sure if I will or not, but know I do not have the energy to do it tonight.  It was good, though, for me to process some of my thoughts at least.  It has been a very frustrating and draining 36 hours, but, I am happy to say, we are HOME AGAIN and THERE IS NO PLACE LIKE HOME!!!  In some ways we need to look at this as a "Bump on the Road in our Transplant Journey" but in other ways it's been a very frustrating "Bump" that has left, especially me, with many "unanswered" questions to things that we have been so "carefully" doing in taking care of Gary since his transplant.

Anyhow, the great news is that he is home and the "bump" was very minor, and no answers as to why he got sick.

We are thankful to all of you for your continued thoughts, prayers, and notes of encouragement.

Love,
Nelly, Gary, and family

Give thanks to the Lord, because he is good. His faithful love continues forever.

 

~~ I Chronicles 16:33-35

 

A Bump on the Journey

Dear Family and Friends,

Just a short note to let you know that Gary is back in the hospital at UIC.  He started vomiting shortly after taking his medication Thursday morning, and because of all of that, they had me bring him to the ER for bloodwork and to rehydrate him.  They decided to admit him so after finally being brought to a room around 11PM Thursday night, it was around 12:30AM when I got home.  I am hoping that this will be a short stay.  

Thank you for keeping us all in your prayers and continuing to walk this journey with us.

Love,

Nelly, Gary, and family

And my God will meet all your needs

According to the riches of his glory in Christ Jesus.

~~Philippians 4:19 NIV

Adjustments

Dear Family and friends,

It's been quite some time since I have written on here.  Mostly because Gary has been slowly but steadily, gaining strength.  Now, having said that, it hasn't been as if everything is all the way better, it is more that as we have, as we had before the Transplant, learned how to help Gary as well as how to notice and anticipate, for the most part, what and when Gary needs something.

Friday was clinic day.  We had gone in two weeks before for bloodwork, and this time we were here for both bloodwork and follow-up transplant clinic appointment.  We didn't expect any thing drastic, just basically a "you're doing great" appointment and "it'll just take time before you start feeling all the way better and have more energy."

As the Doctor went over Gary's bloodwork from the morning blood draw and compared it to all of his previous bloodwork, she commented that there was trace or small amounts of blood in his urine in all his past bloodwork.  She also told us that when he had had a kidney ultrasound in April while in the hospital, they had seen some kind of a spot on one of his own, nonworking kidneys. When they did the transplant, they left in the old kidneys and the old pancreas.  It was felt there was less chance of infection or other problems in keeping them then taking them out.  She decided that an MRI of his kidneys should be done to make sure that the"spot" wasn't causing the trace or small amounts of blood.  She also felt that because of his continual tiredness,  they should add more iron tests on the blood that had been drawn that morning.  They were able to schedule his MRI for Monday morning.

Gary asked whether he could do more things like mowing the lawn.  I was surprised when she told him that he could and that she didn't put any restrictions of at least wearing his hat, sun screen, face mask, and gloves.  I was going to ask about any of those restrictions, but by then the discussion was already on to something else and then it wasn't until we were driving home that I remembered that I hadn't asked.  I decided we would use common sense.  I have also realized, the more I thought about it over the weekend, that the nurses in the hospital were more insistent on wearing a hat, sun screen, face mask,or gloves   The doctors have seemed a bit more lax, not that they don't care, they also don't want people to live in bubble.  So, as we have been doing since the Transplant, we'll look at both sides, you might say, and "go down the middle of the road".  Guess who mowed part of the back lawn Saturday night, you've got it -- Gary, although it definitely wore him out.  I think it felt good to him to be able to finally be able to do something.  He mowed another part of the back yard on Tuesday afternoon and finished the back yard this afternoon (Wednesday).  Our back yard isn't huge, but for him, it took a long time and each time it wore him out.

Monday morning found us at another UIC location down town to have Gary's MRI.  Our appointment was at 8am but it was 11am before we were done there.  Then it was off to the clinic which is by UIC hospital to have an iron infusion.  The results of Gary's blood work on Friday showed that even though he takes 3 iron pills a day, his iron level is still very low and the Doctor feels that he needs to have iron infusions.  The nurse told us that the Doctor ordered 10 infusions -- 1 infusion a week.  He had his first iron infusion on Monday.  It took about 3 hours for the 1st infusion.  He will have his 2nd infusion on Friday morning because the infusion nurse will be out of town for 2 weeks so it was felt that he should have 2 this week.  So, it looks like we'll be spending a lot more time and days at UIC again.  We have not heard any results yet on the MRI and I'm not sure when we will hear for sure.

They also are eliminating (need to go from 3 to 2 to 1 a day over a 2 week period) one of his medications that was helping to stabilize his blood pressure i.e. help his sitting and standing blood pressures not to be so far apart.  It was also to help with the dizziness he experiences (he still does experience dizziness even though the numbers are somewhat better).

We still are taking his blood pressure (both sitting and standing) each morning as well as his pulse, temperature, and blood glucose.  It's still amazing to all of us how great his blood glucose numbers are and how stable they are after having been a Type 1 diabetic for 31 years with numbers all over the place now that he has a working pancreas.

Some things to pray for:
1) That there will nothing seriously wrong on his old kidney.
2)  That they are able to figure out what is causing the trace or small amount of blood in his urine tests.
3)  That the iron infusions will help to make him feel better and give him more energy but also to bring his iron levels to where they should be.
4)  Strength and energy for me especially since Stephanie and Andrew will soon be leaving for College so they won't be around to help me out.  Also, that I won't let the discouragement take hold.
5) Pray for adjustment to having Andrew and Stephanie leaving home for college, for them to have a good transition and great room mates, and for us to adjust to them being gone from home.

I apologize for taking so long to write, but I've been very tired and I'll admit, somewhat discouraged with this going on even though I know it is not nearly as serious as what some of our friends are going through.  Please continue to keep us in your thoughts and prayers.  We appreciate them very much and appreciate that you are "walking with us on this journey." 

Love,
Nelly and the rest of the family

Come to me, all you who are weary and burdened, and I will give you rest.

~ ~ Matthew 11:28 NIV

Getting better takes patience and time -- "You Have to Crawl Before You Can Walk"

Friday, July 19, was clinic day again.  This was the longest time since we had been at the clinic for an appointment with any of the transplant clinic doctors.  It had been 5 weeks since we had our last visit with the transplant clinic doctors.  Since that visit on June 14, we saw some of Gary's pre-transplant doctors again.  June 17, we saw his nephrologist -- Kidney doctor (see bottom of June 18 post section titled "You've lost a lot of weight"), went to UIC for blood work (talked about in post of June 28), went to Calvin College in Grand Rapids, Michigan for Andrew and Stephanie's orientation for college (see post on July 4), had blood work at UIC again as well as saw Gary's heart doctor at MacNeal Hospital, both of these on July 8 (below), went for the weekend July 12 - 14 to Bradley and Laura's to watch Andrew and Bradley do their 1st triathlon (below) and then it was blood work and transplant clinic day again -- those were just the "MAJOR" Gary things, besides those, there were my own doctor appointments that I've been catching up on in trying to keep myself "healthy" as well as whatever else Peter, Andrew, and Stephanie were doing.  So, even though we had a five week "break" from seeing the Transplant Clinic Doctors, life wasn't uneventful.

Monday, July 8, we had a busy day scheduled but I felt it would be very doable.  We needed to get blood work at UIC as well as see Gary's heart doctor at MacNeal hospital.  I assumed that we would be on our way home by 10:30am and have time to go home, eat lunch, have a quick rest all before we would need to turn around and go to MacNeal for Gary's appointment with his heart doctor at MacNeal.  UIC is on the outside of downtown Chicago and MacNeal is in Berwyn, east and south of us and south and a bit west of UIC.  I was wrong!!!  We got to UIC, parked, registered to have his blood work done, went up to the lab, and that's where things started going wrong.  They said they had no orders for blood-work so...... I tried calling the transplant nurse and when I got no answer, we decided to walk to the Clinic which is in the next building.  We explained with the receptionist what was going on and she said she would check with the transplant nurse and they would do the blood work there.  Well...... I checked at one point whether he should go ahead and take his 9am meds which by then were rather late already and was told no, wait until after the blood is drawn.  By 11am, still no blood draw but again told to wait with taking the medication (now we're 2 hours past time).  You don't want to be a pain because you realize they are busy, but..... this is your husband and you've been told that it is VERY IMPORTANT for him to take his anti-rejection medication at 9am and 9pm except on blood clinic days when you take it right after the blood work is drawn which usually is close to that time.  Finally, I think it was about 11:30am that he finally had his blood drawn and he was able to take his 9am medications.  I decided it was time to find out about his 12 noon medication since one shouldn't double the dose of medication, some of which is the same.  I "re-explained" what had all transpired that morning (didn't feel I needed to take the blame -- I'm good enough at making myself feel guilty without having someone else help me feel worse).  Needless to say.......... we didn't go home in between, and I felt the least prepared then I've been in a long time in taking Gary to his heart doctor appointment.

We stopped at a McDonalds on the way (one good way to up Gary's salt intake, I figured) to his heart doctor appointment and were there in plenty of time.  This nurse, like the kidney doctor's office, was surprised at Gary's weight loss (so much for the telephone calls I made to all his doctors about the transplant -- word didn't appear to get totally through).  The doctor was very happy with how Gary is doing and even suggested that one of the heart medications that he is on, can be dropped because of research that he has learned is not as helpful as originally thought.  Since Gary is a transplant patient, all changes to his medications need to be approved by the transplant doctors, so, Gary's doctor called the transplant nurse to let them know that he was fine if they wanted to drop that medication.  Since he got the answering machine, nothing was changed that day.

On Friday evening, July 12, we drove to Bradley and Laura's home so that Andrew could participate with Bradley in a triathlon in by there home.  It was good to be able to spend time together as a family, but it is amazing how just a drive of 2 hours and the heat, which we were already dealing with at home, can tire Gary out and somewhat set him back, so, Gary spent most of the time sleeping or just resting in their home, with the company of Bradley and Laura's dogs, Bear and Bud, who also enjoy sleeping and resting.  If we would go somewhere, we'd make sure he had whatever he needed, which usually included a glass of Crystal Light and a comfortable place to sleep.  Overall, it was nice for him to have a "change of scenery" and great for us all to get to spend time together.  As to how Bradley and Andrew did?  I really don't know for sure, but Bradley was proud that he still beat Andrew overall, even though Andrew was faster then him in the running part of the triathlon.


Thursday afternoon, I called the transplant nurse to make sure that Gary's blood work for his Friday appointment was ordered since when we had been there July 8, there was quite a mix up with his blood work.  Rather then go through that again, I decided to be "pro-active" and make sure it was ordered.  Our appointment was scheduled (not by our choice, we are just told what time our appointment is) for 1:20 PM, but, we need to be at the hospital for blood work at 9am, since it is best that the blood work is 12 hours after his last dose of his anti-rejection medication and before he takes his next dose so they can get an accurate level of the anti-rejection medication in his system.

When we got to the hospital, we registered as usual, and then went to the lab for his blood work.  This time when we reached the lab, they had our blood work orders -- Yeah! -- so things went smoothly.  Gary was quite happy, since the lab had his favorite kind of band-aids -- Taz band-aids!!!  For those of you who know Gary well, you know that he is a BIG TAZ fan!  So much so, that when Bradley was little, somehow (I don't recall when or why), Gary nicknamed him Taz.  Gary was quite excited one of the first times he went for blood work at UIC that they had Taz band-aids, but ever since then, he's only gotten a cotton ball with tape over it, much to his disappointment so, getting Taz band-aids made his day. 
 We took our usual rests and time to walk to the clinic, and proceeded to wait, hoping, that by some chance, we would be seen early.  We had to wait. We were not taken in early, and if anything, we were taken in late, but we knew that would probably be the case so had come prepared as best one can.

We finally saw the transplant doctor, and, since we were 3 month post-op, it was a "milestone" visit.  It was good for both of us to be able to talk to the doctor and get some of our questions answered. We found out from the clinic pharmacist that what we had done for Gary, upping his over-the-counter of packet medicine, when we were at Bradley and Laura's last weekend, was the correct thing to do, even though, when the doctor heard about it later, he first said we had done the wrong thing, but reversed his thought after hearing what the clinic pharmacist had to say.  He also told us that it is good that Gary isn't feeling great yet and doesn't have a lot of energy because if you.  He said that basically, if he felt really good too fast, he would do too much too soon and that could cause the new organs to reject.

We also asked about some of his other restrictions and were told that as he feels up to it, he can carry more then 10 lbs, but to take it slow.  Also, when he feels strong enough and not shaky or light-headed, he can drive.  We asked about him going out more in public and to movie theaters (since that had been one place that he had been told that he shouldn't go), and basically, we were told that the best thing to do is to use common sense and don't live your life in a "bubble".  The one thing he mentioned that we should stay away from is buffet restaurants, because at buffets, one doesn't know if everyone's hands are clean, and if anyone is sick and might sneeze or so on the food as they are serving themselves.  This is worse for Gary then for most other people, since his immune system is weakened.  He also reminded us that when eating, if something smells bad, don't eat it, because if it smells bad, it probably is bad.  The doctor asked Gary if his feet or hands were feeling prickly at all.  He told us that the loss of feeling (neuropathy), which can be common in diabetics, may reverse itself in time.  That is exciting and hopefully will happen in time.  He has some, but for 31 years of being a diabetic, it isn't as much as it could be.  He also told Gary that his tastes may change because some of his taste buds, whether he realized it or not, might have also been lost, and they too, may come back which may cause him to taste foods differently.

Another thing the transplant doctor talked to Gary about is that the weight drop he has experienced -- aprox 25-30 lbs -- will soon stop.  He asked about Gary's appetite.  After the transplant he had no appetite, but, it has improved considerably.  The way I understood the doctor, he explained that now that he doesn't need insulin anymore, his body doesn't need the food that it needed before, that is, because of the diabetes and the need for insulin, his body would go into a vicious cycle of needing insulin to keep his blood sugars down, but in the process, when his body had too much insulin and his blood sugars would become too low, his body would need more food to bring up the blood sugars which in turn would cause his body to think it required more food.  It leads to a vicious cycle.  Now, his body has to get used to not needing the extra food that his body required before the transplant.  So, although his appetite isn't totally back and at this point he can basically eat what he wants, he will need to watch himself, so that he doesn't become diabetic again.

I've decided I've gained a new respect for the clinic pharmacist and the clinic pharmacist for us.  The clinic pharmacist had seen us on Friday before the doctor, and went over Gary's medication list and was quite impressed with the list that Peter and I had put together, even commenting that it was better then theirs.  Later, the clinic pharmacist made a comment to the doctor that we keep very precise records, at that particular moment, the clinic pharmacist was referring to the list of Gary's vitals.  The clinic pharmacist was also happy with how we had handled Gary while we were gone, upping his over the counter medication. It made me happy, because sometimes, you wonder what they think of you or feel that they think you don't know anything, even though I know that shouldn't be my most important thought.  I told her that I felt much more comfortable on what we should do for Gary and when we needed to call in, etc., now, then when Gary first had the transplant -- I guess that all comes with time.

We need to go back for blood work in two weeks and blood work and see the Transplant Doctors again in four weeks.  Overall, I feel we had a great appointment.  I think everyone wants that "magic pill" that will make everything better at once, but, we need to continue to be patient for Gary to get stronger and feel better and to continue to avoid rejection -- "You have to crawl before you can walk." 

I know this was long again, and two posts in two days, but, a lot has been going on so there was a lot I wanted to put into words, therefore, the two long posts.  Thank you all for your continued thoughts and prayers.  They are very much appreciated.

Love,
Nelly and family

Rest in the Lord, and wait patiently for him. 

~~ Psalm 37:7a KJV

"Three Month Birthday" -- and the "New Normal"

Dear Family and Friends,

Today (July 12) is 3 months ago that Gary received his new Kidney and Pancreas.  When one thinks about it, it's really not a long time, but yet, in other ways, it seems so long ago.  We've kind of gotten into a "new" normal for us i.e. what is normal?

So often I find myself saying about our life and hear others say about their lives, "When will life be normal again?"  What is Normal?  For each of us, that is different.  I looked up the word "Normal" on the on-line Merriam-Webster dictionary and there were quite a few different meanings.  The meaning that I found to be most similar to what I think most of us are referring to when we ask "When will life be normal again?" is:  "conforming to a type, standard, or regular pattern." 

When I think about that definition, I guess our life is "normal" in that we seem to have "conformed to a regular pattern" in our life based on what Gary needs.  Now I don't mean that in a bad way, but for us, right now, keeping Gary healthy is very important.  Part of what that entails is making sure he takes his medication on time 4 times a day -- 9AM, 12PM, 5PM, and 9PM.  Certain medications have to be taken 12 hours apart, particularly his anti rejection medication.  Some of his medications he takes 4 times a day, some 3 times a day, some 2 times a day and some 1 time a day.  When we came home from the hospital, one of the things they sent us home with was a very large pill container with 4 slots for each day.  Right now (today), he takes 12 pills plus a packet of another medication at 9AM, 2 pills at noon, 1 pill plus a packet of medication at 5PM, and 12 pills at 9PM.  We all have our cell phones set with these times as alarms so that we make sure that he takes his medications on time, so, if we happen to all be in the room at the same time when these alarms go off, it's quite a chorus or, if you happen to be with us somewhere and our alarm goes off, don't be surprised when we say something like -- "it's pill time for Dad" and depending who's home with him or if we've left him home by himself, I might call home to make sure he takes his medicine or that someone helps get it for him especially when he's lightheaded or shakey since I don't think any of us want to "refill the pillbox and make sure the right pills are in the right slot.  :) 

Although the number amount is the same at 9AM and 9PM, the kinds of pills are not all the same so when I fill his pill containers, I have to make sure I have the correct pills and the correct amount of each pill (one of them he takes 4 of in the am and 3 in the pm) in each pill slot.  Thankfully, that is a challenge I can handle and don't mind handling.  I have taken care of making sure our pill containers (yes, I also have to take a lot of medication for my health issues) are filled each week for many years already because even before the transplant, we both were on a lot of medications. 

Years ago, I made a medication list on our computer that I try very hard to keep updated with RX #, Medication names, pill strength, alternate names (since sometimes they are referred to by a Brand name and sometimes by Generic),  dosage instructions, when last filled and how many refills left until what date.  Having it on the computer made it nice to be able to take it with to all of Gary's and my doctor appointments since most doctors want to know what medications you are on and this way it was easy for me to keep on top of it ourselves, but also was a good way to go over what medications we were on when we would go to the doctors. 

Since Gary's transplant, I've had to change things a bit to keep my list for Gary similar to the way that the transplant clinic's list looks that they send home on each of our visits.  Peter helped me to set up a new document, because as I mentioned in an earlier post, when Gary came out of the hospital, his medications were at several different pharmacies which caused me a lot of  angst.  On our new form we've also added what pharmacy the medication came from, how many pills I have left after I fill the pill containers, how many days does that equal to and how many pills of that particular kind does he take per day and then per week.  This helps me know when I need to reorder pills so that we have refills on time, since not all of his medications are common medications and may have to be ordered.

Another thing in our now new "normal" life is making sure that Gary drinks enough fluid each day.  Since both Gary and I have Sleep Apnea, and both of our machines require using distilled water, we tend to go through lots of distilled water bottles.  Anyhow, since we were having trouble keeping track of how many of the special cups we've been using for Gary to drink from that we had filled each day, Peter one day took one of these empty distilled water bottles, measured water into it by 1/2 liters, and used a black permanent marker and marked lines on the bottle for each 1/2 liter so that there are measurements for 3 1/2 liters on the bottle.  I try to make sure it is filled each night before I got to bed or if I don't get it done at night, first thing in the morning whomever gives him his first glass fills the bottle.  As we give him a glass of Crystal Light (or any other generic type of Crystal Light) we measure from that amount of water from the bottle and either use that water to make him a glass full or measure the amount out before we pour from a pitcher that we might have ready in the refrigerator.  This way, as the day goes on, we have an idea as to how much more he still needs to drink and how much we need to encourage him to drink more so that he can get his 3+ liters a day in.  As time has gone on, he has gotten better at being able to drink the amount that he needs to drink. 

When we go somewhere, we take a bagful of a variety of individual Crystal Light packets (or some generic kind) a long.  At the beginning, I would make up a bunch of water bottle types of measured drinks along in my rolling back pack so that I would have it measured out and be able to know how much he had drunk.  After having one of those bottles of "red" colored crystal light "spill" in my backpack and get all over things that of course I didn't want it to "hit" (isn't that always the way with red juice?), I decided I needed to find a new way to carry his drinks and keep them measured.  I started carrying bagful of individual packets as well as several water bottles (not always near a drinking fountain or water cooler), and as I make a new bottle, I keep the empty packet so that when we're home again, I can know how much needs to be measured out of the measured jug at home.  It has made keeping track of his fluid intake much easier.

The other thing is that each day we take his vitals -- temperature, blood sugar, and blood pressure and pulse rate both sitting and standing.  We do this first thing in the morning.  When he first came home, we did it 4 times a day and sometimes more often, but that has been coming down in numbers as time has gone on.  If Gary runs a temperature, that is one sign that something is wrong and he could possibly be starting to reject his new Kidney and Pancreas.  We are happy that since his last hospital stay in mid May, his temperature has been great.  We usually take his blood sugar first thing in the morning before he eats so that we can have his fasting blood sugar.  We have never seen his blood sugars so good and so consistent!!!  If they weren't, it could be another form of his Pancreas rejecting and diabetes coming back.  We take his blood pressures and pulse rate both sitting and standing because of the large difference between the two and because he is has problems with being dizzy and lightheaded.  We have a chart from the Transplant Clinic that we keep track of these vitals and can write any comments that we feel should be added for example how he is feeling.  Andrew has probably been my biggest helper with this especially if I have to be somewhere before Gary is up.

Do I (we)mind doing this?  No, but it is time consuming.  Sometimes I get frustrated feeling like I'm not doing anything but yet, there are a lot of things that I (and the rest of us) need to do to keep Gary healthy and it is worth it!  :)

I know there's more to say, but will write another time.  I had started this a week ago but am just finishing it today, and want to write a different post about our visit to the transplant clinic yesterday.