Being FLEXIBLE

Dear Family and Friends,

 

We finally made it to Gary's 1st post transplant clinic appointment -- Third times the charm!  He'd been scheduled for two other appointments, but ended up back in the hospital before he could make it to either one.  Several doctors that had seen him in the hospital as well as some of the other clinic workers commented about him finally making it to his scheduled appointment.  We left home at around 9:15am and got  home around 5PM so it was a very long day.  Part of that time did involve travel and parking -- approximately 45 minutes going in and approximately 1 1/2 hours going home -- you have to love Chicago traffic and be FLEXIBLE.  Thankfully, over the years of living out here, I've gotten used to driving on the Eisenhower. 

 

The word of the day is FLEXIBLE.  I've decided that these clinic days are going to be long days and that one needs to be FLEXIBLE and realize that things will more then likely not go as planned.  We were told to get Gary's blood work done first at the out patient lab but, when we got there, the "lab order" that we had been given was not, according to the receptionist at the lab, on the correct paper and also, we needed to go to registration first.  Rather then make Gary walk all over since he still is gaining his "walking legs" back, the receptionist suggested he stay there and I go to registration and also to the clinic for the proper paper work -- Good thing we did it that way because even though walking is not my strong suit either, right now I can walk much better and faster then Gary (we'll see how long that lasts).

 

His appointment went well, overall.  They answered questions that we had, explained some of the things they wanted him to change in his diet, for example, get this, he needs MORE salt! -- not something most people are told.  It's been interesting changing his diet already since he can now eat like most people i.e. not restricted anymore from sweets because of the diabetes, not restricted anymore from things like kidney beans, split peas, whole grains,  foods with a lot of potassium and phosphorous, because of the kidneys.  Good thing we're used to being FLEXIBLE in what we eat.  The only food that he cannot have is grapefruit because of how it interacts with the anti-rejection medications he is on.  He also needs to work on drinking more fluids.  Before the surgery, since his kidneys were hardly working, he didn't drink a lot, so now, he has to learn to drink a lot more.  Apparently, he's still not drinking enough since some of his blood work and vital signs indicate that he still is somewhat dehydrated.

 

They also changed some of his medications based on his vital signs and his blood work -- added a new medication and changed the dosage of one of the others they  already had him on.  I we also need to start checking his blood glucose each morning when he wakes up before he eats, check his blood pressure (both sitting and standing), pulse, and temperature each day.  He has to take medicine 4 times a day (I have my alarm on my phone set for the 4 times).  The most important is making sure he takes his anti-rejection medications twice a day 12 hours apart (9AM, 12 noon, 5 PM, and 9PM).  I finally set his pills up for the week -- hopefully I won't regret that, since I'm still learning what pills he needs to take when as well as what they all look like, and when the dosage changes, I usually need to separate them all and start all over.  Very few of the medications he takes now are the same as what he took before surgery.  My understanding is that the medications will be changing quite frequently for awhile until all of his numbers in his blood work level out, so again we need to be FLEXIBLE.

 

If my understanding is correct, it looks like for now, as long as he's doing well, that we will have to go for blood work on Tuesdays and then blood work again on Fridays as well as see the doctors at the transplant clinic at UIC.  The Tuesday blood work can be done locally so we plan to do that.  Friday, we'll have to figure will be another long day.  We'll have to stay FLEXIBLE as I won't be surprised of changes happening in both of these either.

 

Good thing I was FLEXIBLE and packed lots of snacks (Peanut Butter and jelly sandwiches, grapes, 3 crystal light packets for Gary besides the cup he had with him already, and water and of course, coffee for me), to make it through the long day.  Right now Gary's appetite hasn't all the way returned, so this was all we needed until we were home again. 

 

As of tonight, Gary has been home the longest time since he's had the transplant surgery -- hopefully things will keep going well.

 

Please keep praying that Gary will continue to do well at home and also continue to pray for strength and energy for all of us.  We're all very tired.

 

Thank you all for your continued thoughts and prayers.  They mean a lot to us. 

 

Love,

Nelly and family

 

Are not five sparrows sold for two pennies?  Yet not one of them is forgotten by God.  Indeed, the very hairs of your head are all numbered.  Don't be afraid; you are worth more than many sparrows.

                                                      ----  Luke 12:6-7 NIV

    

 

The 3rd Time's the Charm?

Dear friends and family,

We're home AGAIN!    Hopefully we'll make it at least past our 1st clinic appointment which is now reset for Friday, but hopefully a lot longer.  They have decided that Gary has C-diff so he will be on an antibiotic for 10 days -- not what we wanted, but from the way they are talking, the antibiotic should take care of it. They also told me what things we should do at home as well as things we need to watch for in him.  If the culture had not come back positive, they were thinking it might be a reaction to some of his medications.  The good thing is he's doing better and is home.  It will be nice for him to go for a walk out in the beautiful sunshine even though he'll have to always wear sunscreen and cover himself with long sleeves to be in the sun -- I'm sure it will just feel good to be outside again.  

Now it's time to fight the C-Diff, get him stronger again and continuing in the right direction, and try to get our lives back into some semblance of order, whatever that may be.  I mentioned to Gary this morning that it's May 1.  He chuckled and said what happened to April?  Little did we know HOW our lives would change when we received the telephone call we did on April 11 to make sure he was "healthy" and that there might be a kidney and pancreas available for him that night.

Thank you so much for your thoughts, prayers, cards, rides, meals, cups of coffee, listening ears, hugs, and many other kindnesses shown to us.  They truly have, and continue to be, a blessing -- "Count your many blessings, name them one by one" -- We are truly blessed with all of you and all you've done and continue to do for us.

Love,

Nelly and family

I saw this verse on facebook today -- what a great reminder for me!

               Cast all your anxiety on HIM because HE cares for you. 1Peter 5:7 NIV 

Back on 7 west UIC Transplant floor

Another day on the 7th floor west of UIC transplant.  Gary is in the only wing he still hadn't been in since the transplant and is also in a room by himself.  From the outside, it doesn't seem like much has happened today, but they've done blood work and are growing cultures to see why Gary is having some issues.  They think it may be a reaction to the medicine, but at this point do not know for sure.  From his blood work, they determined that his potassium level was too high, so they had to treat that with dextrose and insulin.  The way I understand it is that the potassium is just laying there outside the cells so they give him insulin to help push the potassium into the cells and the dextrose to counter the effects of insulin since he doesn't need insulin anymore -- it's as if one thing feeds off of the other which causes ........  you get the picture.

They haven't let him walk around today -- not that he's been jumping up and down to do that, but yet for other things, walking is encouraged so ........... again, you get the picture.

Lots of questions and not a lot of answers, but hopefully answers will be coming soon.

Looks like we'll miss the 1st post op clinic appointment again since he's back in the hospital, he's just getting his blood work and doctor visits in the hospital for now.  Hopefully soon we'll be spending much more time at home then in the hospital, but for now, I'm glad for the care he does receive.  We've encountered a lot of wonderful people here at UIC.

Pray that soon the doctors will be able to find some answers as to why Gary continues to have a variety of problems and that there will be some solutions.

Pray for strength for all of us -- I know both Peter and I were very tired after last night and both slept in this morning before we could go on with our days.

Thank you again for all of your thoughts and prayers.

Love,
Nelly

Back in the hospital again :(

Gary was readmitted to the hospital for some more tests and observations.  He had been doing really well, I (Nelly) thought, but in the late afternoon and early evening, he had a problem that was on the list of things that you need to call in for, so we were told to go to the ER.  Peter brought us in and went back home and will come back when I call.  Good thing, because we have been here since around 7:30 or 8 PM.  Hopefully Peter is sleeping since it is already 3:35AM and they are still waiting  a room.  I need to learn how to sleep better in hospital chairs.  Sorry for any typos, but I am using Peter's Kindle so not as easy for me to type.  Please continue to keep all of us in your prayers.  It's now 5am and Gary is in a room and Peter and I are back home again.

Love,
Nelly

Home Again, Home Again, Jiggety Jog

Dear Family and Friends,

He's home again, but unlike the nursery rhyme, he's not ready to go to market and he's not ready to jog, but it is nice to have him home and not have to make the trip to UIC every day.  Wednesday, we will have to go back for our first clinic appointment which, if our understanding is correct, will mean spending quite a bit of the day there. 

Gary called both Peter and I while we were at church this morning that he was being released.  Peter and I went down to get him, but when we got there we found he still needed a 4 hour antibiotic IV, so Peter went home again while I waited with Gary.  Gary napped for quite a bit of that time and watched part of the White Sox game.

We were never really were able to figure out what specifically caused the need for the bright yellow gowns yesterday and since he was going home, even though they were still there, we didn't need to wear them.  The good news was that his blood sugars appear to have leveled out as well as his blood pressure.  No one mentioned how his white count was today and I forgot to ask.

Please pray that he will adjust well to being home.  Part of that involves learning to drink a lot more fluids, particularly water so he stays hydrated and eat differently now that he has a working Kidney and Pancreas -- things we had had to eliminate from his diet his body now needs like phosphorus, potassium, and magnesium rich foods, so I guess some more papers will be added to my cupboards.

Pray also for continued strength and rest for all of us as we adjust to him being home again while still continuing clean up from flooding, also school for Andrew and Stephanie, work for Peter, as well as other things that were put on the "back burner" somewhat while Gary was in the hospital.

As we left today, the nurses told Gary, don't come back again unless you're coming to say hi -- that's our wish too.

Thank you all for your continued thoughts and prayers.

Love,
Nelly and family

New Guest Attire -- Bright, Yellow, Paper Gowns

Hi,

I didn't get to see Gary until tonight -- needed to do some work at home with Andrew and Stephanie  and Peter was on the Cadet campout.  He did have a visit from a friend of his who lives in California and perfect timing, the Bulls game was on and from my understanding, it was an exciting game for them to watch and went into overtime.

When Gary's friend was there, he had to wear a gown which was rather puzzling since no one else has ever had to wear one, but when I got there tonight, on the door was hanging the isolation kit -- gowns, gloves, masks, etc.  Not clear why, all of a sudden, we need to wear these, if anything, I would have thought that we would have had to wear them right when he had the transplant, so I asked the nurse about it.  The nurse he had tonight had no idea either, nor, from what he said, the nurse during the daytime, so, tomorrow we will have to find out what is going on with this.  One of the strange things is that Gary said he was allowed to walk outside of the room -- a bit puzzling, but will have to investigate tomorrow.

He still doesn't have much of an appetite, but his blood sugars, blood pressure, and temperature are all doing well so that is a good thing.  From my understanding from the nurse, his white count is still up and they are growing more cultures, so not sure if that has something to do with the new attire.

I only stayed about an hour or so tonight which is short for me, but he was glad I came even though we were both tired.

Please pray that there is no serious reason that we are now having to wear gowns,  Also, please continue to pray for strength and energy for all of us -- we're all really tired.

Thank you again for all your thoughts and prayers.

Love,
Nelly

Have IV Pole -- Will Travel

Today has been a pretty good day overall.  Although the doctors seemed to have come around earlier then usual Gary appeared to have been more alert and said that he was told that he would be put back on regular food with lunch.  His Blood Pressure, temperature, and blood sugars are all pretty much back to normal.  His White blood count and pulse are both still elevated from what I understood from Gary.  Right around 1:00PM, the charge nurse came into his room and said we would be moving him now back to the room he was in for a few hours the other night (a one person room), and with that, we were on our way to the next wing and room.  It's pretty easy to move someone if they basically have only the IV pole and a few other hospital items they've acquired in their stay at the hospital.  I commented to the tech that was helping us move, "I guess it's have IV pole, will travel".  He laughed.  Gary had already taken a walk around the nurses station in the morning and napped and the walk to the "new" room put him to sleep again.  Amidst the move, his meal didn't follow -- the nurse found out that the meal deliverers thought he'd been discharged so took it back to the kitchen, so the nap "worked up" his appetite for his solid food lunch, since when it finally "found" him, he ate most of the main part of his meal.  His appetite is definitely not back yet, but he ate more then I've seen him eat since the transplant.  The surgeon and residents came around this afternoon to check on him again and are happy with how things are going although they still want to keep an eye on him and make sure things keep heading in the right direction.  One thing having to work on is his fluid intake to stay hydrated.

Last night we made quite a bit of headway with the "flood cleanup" and things heading out to the curb for Saturday's extra flood pickup.  I came home early yesterday since I knew Peter, Andrew, and Stephanie would all be home to help me with the clean up.  On my way in this morning, it looked like lots of people had the same idea last night.  Hopefully we'll still get more out tonight or early tomorrow morning before the garbage truck comes around.

 

The kids have all encouraged me not to drive to the hospital and take those who have offered rides up on their offers.  With my own health issues, I never know if I'll be able to find close enough parking and, with all that's been happening in our lives, I've been really worn out and am really noticing it today as I write this since I keep dosing off and having to delete what I've accidentally typed.  I keep learning that it is ok to accept peoples offers for transportation and other help, but human nature would rather be on the other end giving others help.  I've been very appreciative of those who have given me rides so far and have enjoyed my times visiting with them and we as a family have enjoyed the meals that some of you have brought to us.  It has been a great help. 

Please pray for continued health and moving in the right direction for Gary, that all of us will stay healthy and get the rest that we need, as well as for strength and energy to accomplish here at home all that needs to be done.

Thank you for your continued thoughts, prayers, cards, rides, meals, phone calls, listening ears, and anything else I may have forgotten to mention.  They have ALL been very much appreciated.

Love,

Nelly

P.S.  I was trying to add pictures last night and had trouble doing it, so in the process I guess I must have taken the this post off -- sorry about that.