Dear Family and Friends,
Can you believe it, Gary's been out of the hospital for 2 weeks as of tonight!!!! That's the longest stretch since his surgery and we're very thankful for that.
The devotion I was reading this morning from Starting Your Day Right
by Joyce Meyer, was titled "In Our Weakness He Is Strong". One of the sentences towards the end of the devotional says "Go out
boldly, knowing that in our weaknesses we will always find His
strength." Just now, I
looked up on the computer what the definition of weak is and this was
the first one that popped up -- "Lacking the power to perform physically
demanding tasks; lacking physical strength and energy".
I thought to myself, how appropriate for how I've been
feeling, tired and weak, and yet, God keeps giving me the energy, when I
need it, to do what I need to do.
We had our next visit at the clinic yesterday. We've learned to assume that Clinic days mean spending most of the day at UIC and plan to do a lot of "hurry up and wait". Today was no different in that respect. The drive in (as well as the return home) is usually full of traffic and for those not used to Chicago traffic, it can be a challenge knowing which way will be the "fastest" at that time of the day -- expressway with stop and go traffic or the regular roads with stoplights and turning people. So usually it's a combination of both. The drive alone can take anywhere from around 25 minutes to 1 1/2 hours but I would say is usually around an hour + or -.
Today I REMEMBERED Gary's pills -- I'll be honest, I wasn't going to go through what I did last week, so since the pill container they gave us when Gary left the hospital the 1st time has a separate container for each day, I packed them in the bag already on Wednesday because I wanted to make sure I didn't forget. But, when we got to UIC, parked, and were checking in at registration, I couldn't find our parking ticket. I was a bit concerned wondering if I had dropped it and lost it somehow in getting all of our things together when we got there, so......I walked back to the elevator with my rolling bag and cane, got to the floor we had parked on, got to the van and unlocked the door and THANKFULLY, my parking ticket was lying on the floor of the van. Once again, I retraced my steps back to the registration area to meet up with Gary who had meanwhile registered for the day. I had gone over with Gary what he needed to do and where he would go if he finished with registration before I got back. I also didn't want to leave anything with Gary in case it took me longer then it would take him to be called to register, since he's limited with how much he can carry, and doesn't have a lot of strength and energy to do more then take care of himself.
Outside of registration, I saw one of the many doctors he had had in the hospital so stopped to talk with him for a few minutes. We went up 2 floors to do his lab work and then it was time to take our walk to the clinic. It's nice that we can basically stay inside once we park besides the walking from the car to the parking garage elevator. There is an enclosed bridge from the parking garage to the building that we always start out in, and then a bridge from that building to the building that the transplant clinic is in. This way, even if it's cold outside, we don't need our jackets if we can handle the coolness to get from the car to the building so then don't need to lug them around with everything else we have with (medication, any paper work such as medication lists and other medical notes we might need, things to do all day, food and snacks for the day, crystal light for Gary, and water for me). I've been using my rolling bag that I used during my last year of
teaching rather then the back pack I used at first while Gary was in the
hospital which was really heavy for me to carry especially on days I
would bring Andrew or Stephanie's laptop.
Once we got to the clinic and checked in, it was time to wait again for his appointment. When we were finally called in, we found out that we would be seeing the Physician's Assistant since the doctors were in another transplant surgery so we again met someone new. Since we're somewhat "then new kid on the block" and these doctors get quite overbooked, we seem to see a different doctor from the transplant team each time and so they each have to familiarize themselves with his case and they all say "it won't take so long next time" which makes me chuckle since so far, I think we've heard that at every visit -- not sure how many others we still need to meet.
Gary again needed an IV of a liter of fluid since he is still fighting dehydration. His blood pressure still drops when he stands and he is still fighting some "uncomfortable" issues which they are trying to determine if it is side effects from some of his medications or if something else is going on. His pulse rate is still much higher then they would like it to be. He's also still very tired and was so tired, that the nurse told me he fell asleep while he was getting his IV. As usual, there are also medication changes.
By the time we were finally finished with everything, it was after 3PM and time to start heading home. So.....onto the Eisenhower we go to get back home. Again we are in the "stop and go" traffic as we, along with everyone else trying to leave Chicago at 3PM on a Friday afternoon. As bad as the traffic was going home, I was glad we weren't trying to head to the city, since it was moving even slower that direction.
Last week I wrote about pharmacies and how I felt that I should have all his prescriptions transferred to the CVS pharmacy we had always use. Each time Gary is dismissed from the hospital or goes for a clinic visit, we get a new medication list with the name and strength of the medication, what the medication is for, possible side effects, how often and how much each time he takes. I took that information and made my own chart on the computer and also added the RX#, when the RX was picked up, how many refills are left until what date, Pharmacy RX is at along with address and telephone number, how many pills I have left after filling Gary's pillbox, how many days of medication I have left as of the date I have it filled through, how many of that particular pill Gary takes each day total. After that, Peter helped to make it even easier to keep using. I took my sheet, along with the sheet from the clinic, and went and talked to our pharmacist who agreed that it would be good to have all the prescriptions at one place so was glad for the information we had on the sheet and would start the process with the prescriptions that he needed first.
Anyhow, we again ran into some issues with medication changes this week as well as trying to get insurance approval, so it was a blessing to already be in the process of moving everything over that wasn't already at our CVS, since last night, I had to make 2 trips to the pharmacy as well as a phone call that I made to the nurse at the clinic, who thankfully was still there, 2 telephone calls with the pharmacist as well as a call from the Physician's Assistant. By the time everything was as straightened out as it could be until the pharmacy can get more information from the insurance on Tuesday because of the holiday weekend, and that I had Gary's pills ready for the next week after having to change one of the medications twice, it was after 10PM.
Both Gary and I were extremely tired after our day and still are very tired today. Today, I did go with Peter and Stephanie to run a couple errands, one of them being looking for a specific over the counter medication for Gary in a larger supply then 4 days at a time and a cheaper price, but wasn't successful. I did run into a good friend of mine at Wal-Mart, so rather then go home with Peter and Stephanie, she treated me to lunch at the Subway there, and we were able to have a long overdue visit, then, when I got home, two of my neighbor ladies came out and we had a chance to also catch up a bit. What refreshment visits with friends can be, whether in person, by telephone, in a note .... you get the idea. You've all been there for us in so many ways and we appreciate that more then words can say.
1. So thankful that again I caught the medication error again today before it became any more serious and that Gary only ended up taking one dose of the wrong dosage. Please pray that the medication coverage issues will get resolved with the insurance and that we don't run into anymore medication errors.
2. Very thankful that Gary has not gotten worse this week and maybe even a little bit better. Please pray that Gary continues to get better, that the dehydration will get better, that they find no other infections, that his cough (probably left over from the pneumonia he had earlier) finally leaves, and that he continues to get stronger.
3. Thankful for family and friends and all they mean to us and do for us in so many ways.
4. Please pray that the rest of us stay healthy -- a couple of us have felt colds coming on this week and I've also been having some of my sleeping issues again i.e. not being able to sleep during the night when I should be sleeping and being over tired and then in more pain from my own physical problems. I'm thankful that none of us have actually ended up with full blown colds so far, or gotten sick with anything else contagious so far that would make things worse for Gary.
God has truly been watching over us and taking care of us. He has also blessed us with placing so many wonderful people in our lives and we thank HIM for that as well as thank all of you for "walking with us" on this journey.
Love,
Nelly and family
Yes, You are my Rock and my Fortress;
therefore for Your name's sake lead me and guide me.
~~Psalm 31:3 AMP
