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
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