It's been just over a week since I last wrote, but figure daily reports aren't needed and I've been too tired and busy since our appointment on Friday to put my thoughts down on "paper" (as I typed that, I realized that the phrase, "down on paper", doesn't apply but couldn't think of a better one).
As we look back, we started seeing a change in Gary's appetite and drinking ability around this past Wednesday -- he was starting to eat more and also not having to "struggle" as much to get down his 3+ liters each day. With that, we realize that he's getting a bit stronger. All good things that we thank the Lord for.
Friday was again spent at the transplant clinic. We weren't sure what to expect since, since the last 3 times he had to be re-hydrated with and IV at his appointments and we weren't sure whether he would need to be hydrated again at the clinic. I also had been dreading the day since when they were finally able to make his appointment when I called on Tuesday (they are always double and triple booked, and were not able to make me an appointment after last Friday's appointment for this Friday but instead had me call twice on Tuesday for the appointment), the appointment wouldn't be until 3PM which meant being there by 9AM for blood-work and then spending the rest of the day waiting at the clinic (not many places to go especially when walking isn't great for either of us) and waiting for our 3PM appointment, hoping that we would somehow be taken in earlier. All week, I had not been looking forward to this. In my devotions that morning, Enjoying challenges was discussed. One thing that Joyce Meyers mentioned in this devotion from Starting Your Day Right was this: "Decide early to enjoy every challenge that faces you today, knowing that God will be with you to make your paths straight and to prosper in everything you set out to do". If that wasn't God "hitting" me on the head. God never promised that our lives would be easy, but HE did promise to walk with us and give us the strength that we need to get through when we need it! I don't know about you, but that is something I have to keep reminding myself of when I start to worry, and those of you who know me well, know I worry well and overanalyze well. So, I did some more praying about it all, praying that I would "enjoy" each challenge knowing that God would be with me.
Anyhow, our morning was starting off a bit different then usual in that Thursday night had been Prom for our high school and Andrew had gone there and come home in the wee hours of the morning to sleep before leaving for a friends cottage, and Stephanie and Peter had decided to go to Great America for the day. Andrew and Stephanie also had their 18th birthdays on Friday, so, in trying to make their birthday special, I made sure I had cards sitting by the coffee pot for when they woke up and also changed my facebook to honor them. I had also bought each of them a big Chocolate Chip Cookie for their birthday without them knowing (which in this family is hard to do especially with all that is going on), and between Peter and I, we gave it to the Mom (thank you!) whose cottage Andrew would be staying at after the kids left for Prom so that he could be surprised on his birthday, and we gave Stephanie's hers when she and Peter got home from Great America. They were both surprised! I was used to having them go off to school and then leaving for the clinic, but everyone was sleeping so I did wake them both enough to say Happy Birthday and to also ask Andrew how the night had gone since otherwise I wouldn't be talking to him until he came home on Sunday. So, we did leave a little later then planned, partly because of all of this, but also partly because I was too tired and was having a hard time waking up when everyone else was still sleeping.
We did get to UIC a little after 9AM, registered, went to the lab for Gary's bloodwork, etc., and then took our usual break to take medication, drink fluids, and maybe have a snack if he's or I are hungry. He's supposed to wait with taking his anti-rejection medication until after bloodwork, that's why the lab work needs to be done right around 9 AM since his morning dose of antirejection medication as well as quite a few other meds is 9AM. We sat a bit longer since we had time and we were both tired, and then started our venture to the clinic. We did notice that quite a few people have trouble finding the lab. Gary figured out why and then when I looked at the sign, I noticed he was correct, the signs all say PHLEBOTOMY not LAB or BLOOD LAB, and a lot of people don't know what that is. We ended up seeing several people that morning with their lab paperwork in their hand looking all around so we'd direct them to where they needed to go.
I had packed a lot of crystal light for Gary as well as water for myself and food for us both since there aren't any places in that building that we're aware of to find food to eat, as well as the newspaper and other things to do figuring that it would be a long day and that we'd just figure on a long day and hope that they would take him in earlier. As I said earlier, we weren't sure if he would also need to be hydrated like he had been the past 3 times which adds another hour to two hours on the time we would have to be there. After we had waited for awhile, they did call us in quite a bit earlier to at least get his vitals done (weight, B/P both sitting and standing, and temperature. They don't usually take his blood sugar, because they have us do it at home so that they can have a fasting (not having eaten for approx. 12 hours) blood sugar. After this was all done, we were sent back into the waiting room until they were ready for us.
We again sat for a while before we were called in. This time we saw the Nurse practitioner in training. She had been in the room last week when we had the other Nurse Practitioner (I wrote Physician's Assistant in the blog last week, but it is really a Nurse Practitioner not a Physician's Assistant) so she was quite familiar with our case. She wanted us to ask her all the questions we had and if she didn't know the answer she would have the doctor answer it. Dr. Garcia was the doctor we saw that day. She was quite happy with how Gary was doing, changed a couple of his meds, and said he did not need to be hydrated that day. In fact, he was doing so well -- she was quite happy with his blood work, where his blood pressure was at, how his bloodwork looked, how much fluid he was taking in, that she felt that we could change from taking his vitals 3 times per day (we were at 4 times/day for quite awhile), to only having to take them once a day. Also, he doesn't need to come back to see her for TWO WEEKS! That's the longest since April 11 that we will not have to be at UIC! She also said that he can go to graduation as long as he wears his mask and stays out of the big crowds. He does need to work on eating more foods with higher amounts of magnesium so that he doesn't need to go on medication again for magnesium. They also want him to get more salt into his diet so Dr. Garcia told him "now is the time to eat more salt. If you feel like eating potato chips, go ahead and eat them." She went on to explain that part of his lack of salt is a side effect of some of the medications he is currently on, so as they are able to wean him off of these medications, he will have to watch his salt intake again, so, she told him, he may as well enjoy his "salt" while he can.
The nurse who does his IV's at the clinic had already set up for him when she saw him on the list for coming in that day so she had fun teasing him about how now she was going to have to put it all away but, she said I really don't mind because now I don't have to stay as late either.
We were on our way around 3:30PM -- considering that our original appointment was scheduled for 3 PM, that was really good. The ride home took awhile though since there was a bad accident on the Eisenhower (by the Austin on-ramp coming onto the Eisenhower going West). For those not familiar to the Chicago area and the Eisenhower, at Austin the road coming from Chicago goes from 4 lanes to 3 lanes. Because of the accident, the road had to go from 4 lanes to 1 lane, so it took quite awhile. There was a car that had flipped over and was quite messed up with another vehicle in front of it also stopped and 3 police cars blocking the Eisenhower lanes. I'm not quite sure what happened, but the car was totally flipped over and looked to be turned backwards. You could see the airbag sticking out. Once we got through there it was back to 3 lanes. I said to Gary, even though it seemed very empty after that, no one seemed to dare go over 55 MPH -- I think it affected everyone. I know it "hit" me and made me silently pray for whomever was in there.
As usual, I'm still dealing with medication challenges, but it is much easier dealing with one pharmacy then dealing with more then one even though I spent Friday evening on the phone with the pharmacy, Saturday in the pharmacy, and just got off the phone with the pharmacy. We still are dealing with some "mix-ups" between some of the prescriptions being at the some of the hospital pharmacies and insurance not wanting to cover, but the frustrating thing is that one of the hospital pharmacies didn't bother to call me to tell me that they had filled the prescription and had it sitting there for me -- crazy! I'm so thankful for the patient work our pharmacists at CVS are doing to help in getting everything straightened out -- it's been quite a challenge! Two of his medications we've been trying to get straightened out for a week and 1/2 already!
One another good note, Gary did go to church for the 1st time since the transplant. He felt good enough to go when he woke up yesterday and so since the Doctor had said he could go to graduation with a mask and stay away from the big crowds, we sat towards the back where we usually do (yes, we've fallen into a rut and tend to sit in the same spot from week to week), and rather then stay after church and visit, Peter walked around the outside of the church with Gary to the van and Stephanie came and picked me up from Children's Church and we walked to the car. We also wanted to get home because Bradley, Laura, and their dogs, Bud and Bear, were coming over and Gary would also be able to see and pet Bud and Bear (the Doctor said ok but just don't let them bite him). He was tired when they left at 12:45, and promptly slept (still seems to be a favorite past time).
So, lots of challenges, but lots of good news too!
Please keep us in prayer that:
1. Thankful for the good doctor report.
2. Thankful that Gary felt up to going to Church.
3. Thankful that Stephanie plans to work at home this summer helping Nelly with the many things around here that need to be done rather then work away from home at a better paying job. I know I'm looking forward to having her home and having her help.
4. Gary will continue to get better, that his appetite will continue as well as his drinking will keep going well.
5. The insurance and medication issues will get resolved and that we will continue to have a good working relationship with our pharmacy.
6. That Gary will feel strong enough to go to Andrew and Stephanie's graduation on Thursday night.
7. Pray that Nelly won't always feel so tired and will somehow relax and get the rest she needs.
Thank you again for "walking this journey with us" and for all of your thoughts, prayers, and other shows of kindness! They are appreciated more then you know and we can't say thank you enough.
Love,
Nelly and family
But it is good for me to draw near to God; I have put my trust in the Lord God
and made Him my refuge, that I may tell of all Your works.
~ ~ Psalm 73:28 (AMP)
