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.



Moved again but hopefully heading in the right direction

Peter brought me to the hospital this morning.  It was nice to have him listening in, too, when the doctors came on their rounds.  When we stopped to get our visitors passes, I noticed right away that Gary was in a different room again.  During the night, they did move him, so now he is in the main ICU transplant unit where they had originally wanted to move him.  Here he could be monitored more closely.  From what I can figured out, this is where they had originally wanted him, but it wasn't available at first.  I was a bit worried that he had gotten worse so was very thankful he hadn't, in fact, he was a bit better then last night.  His temperature was down, which was a good thing.  They were still treating him with an antibiotic because of the rise in white count, but none of the tests they have done so far show anything wrong.  Depending how the temperature goes today, as well as how the white counts go, will determine whether more tests will be done.  His blood sugars have also come down although still higher then they would like, so they have been giving him some insulin.  They did take out about half of the staples (every other one) since the incision is healing well.  His temp did slowly risen today, but still is quite a bit lower then when I left to go home yesterday.  He took a "3 lap" walk around the nurses station this morning and promptly fell asleep when he got back to his room.  He also took a "2 lap" walk around the nurses station shortly before I came home this afternoon, and was definitely ready for another nap.  He is back on a liquid diet although he has very little appetite.  I have to say that overall, the doctors, nurses, and staff at the hospital have been very wonderful to him and kind to all of us.  All in all, he's hopefully heading in the right direction. 

Thank you all for your continued support through thoughts, prayers, and other kindnesses shown to us.  They have all been very much appreciated. 

Love,

Nelly

Moved -- Still at UIC but in a different room

Dear Family and friends,

 

Gary was just moved to a different room -- where they will be able to keep a better eye on him but my favorite part is, he will be by himself and hopefully less chance of catching something else.  If I understand correctly, it is part of the transplant ICU -- a step up from what he was but a step down from the main ICU area.  The "move" to his new room down the hall wore him out and he's sound asleep right now.

They have been trying to figure out why he is running a temperature, why his white blood count is higher, why his blood sugars are higher, and his pulse rate is much higher then usual, as well as a few other things.  They do feel that the sugars are higher because of the temperature and the high blood count, but they are keeping an eye on it and at times he has had to be given insulin for it.  It is good to see that his blood pressure has come back down today.  They are growing blood cultures, and they also did an ultrasound of his legs to make sure he is not getting any blood clots today.  He was also put back on NPO -- Nothing by mouth, not that he's gained much of an appetite yet.  He hasn't even argued about the NPO today considering last week he was "bargaining" to try and get ice chips!  I thought for sure he would be asking for ice, but he hasn't even seemed to want anything.

On the good side, the doctors feel that the Kidney and the Pancreas are both doing well and that the numbers for both are good, so they do not feel that his body is rejecting them. 

He is looking better as the day goes on (even the doctors and nurses have been commenting on that when they've been in the room), although he apparently had a rough night last night both he, and later, one of the resident doctors told me. 

Hopefully he'll get a good night of sleep tonight and tomorrow will be feeling better.

Please pray that the doctors will be able to find some answers and that soon he will be back on the "right track" again.  Pray also that we all stay healthy so we can be there for him and not give him anything.

It still amazes me how our lives have changed so much in such a short time.  I continue to say Thank you to the Lord for blessing us with this gift and still pray for the family who gave us this wonderful gift. 

Thank you all for your thoughts and prayers -- they are really appreciated.

Hit a "Bump" so back at UIC

Dear family and friends,

 

I have to admit that while writing my blog update yesterday morning, Gary was already starting to not feel good.  Not wanting to write about each moment he wasn't feeling "up to snuff" and hoping it was just a bad start to the morning, I decided not to mention it in my writing. 

 

While in the hospital, we were told we needed to be very strict with giving him his medications on a certain schedule so I had woken him up at 9am to give him his first round of meds for the day.  When he woke he said he wasn't really feeling good, I had been hoping it was just a slow start to the day and that it would become better as he started his day.  Before we were told to come in, he had vomited twice, wasn't able to get much fluid down, and was in a lot more pain then he had been for a few days.  It was a long day which included IVs and an ultrasound and evening at the ER partly because they were waiting for a room to be available for him and he was finally brought to a room about 10 PM and I left shortly after that. 

 

This morning, he's on a liquid diet along with his IVs.  I was hear when the doctors came through -- being a teaching hospital, it's quite a group, and they decided that a CT scan would be done at some point.  He took a walk around the floor and right now he is finishing off the liter of a special mixed solution that he needs to drink before the CT scan.  He is looking better today then yesterday so we'll see what else is in store and if he'll be coming home today or have to stay another night. 

I've heard from several of the residents, nursing staff, and techs that have been through here that this is not uncommon, so we'll pray that this is just like I've been thinking, a "bump" in the road of Gary's recovery.

 

Thank you all again for your continued thoughts and prayers.  They are really appreciated.

 

Love,

Nelly

 

 

Back to the Hospital

Mom ended up taking Dad back into the hospital this afternoon. 

After throwing up twice, the doctors thought he should be brought into the ER.  After some blood work, an ultra sound, and a few hours on IV's he is being admitted to the hospital. Currently they are still both waiting in the ER for a bed to become available.  Mom feels that the doctors are not to concerned with this set back in the big picture, its more just a bump in the road.

Hopefully all the test the doctors run today and tomorrow don't reveal any major issue or set backs.

Before the removal of the hated beard.

Thanks for all the prayers, notes, and letters.

Peter

Welcome Home??? or Welcome Home :)

Dear family and friends,

It's Monday morning.  Gary has been home now since Friday evening around 9PM.  I must say that a week and 1/2  ago, I would not have expected all that has happened to have happened.  It's been a crazy time but a blessed time, even with all the ups and downs and the "roller coaster" rides.  I apologize for not having written anything since Wednesday, but a lot has happened since then and definitely not at all as we'd planned. 

Wednesday afternoon, it started raining and raining and raining.  By Thursday morning, we, along with many, many other people around here, had water in our homes, some a few water spots, others many feet of water.  We ended up with about 4 to 5 inches.  A lot of the roads in the area had flooding both local and also some of the tollways and expressways, so one needed to weave their way through the streets to get anywhere.  Timothy Christian School where Andrew and Stephanie go, as well as many of the schools in the area were canceled, so Andrew, Stephanie, and I spent the day working on our basement getting rid of the water as well as starting the process of cleaning it out -- they did the lifting and we all did some of the sorting and tossing.  Peter was quite busy with work, having already started around 2 AM, dealing with flooding issues, but was able to set up a great system in helping to get the water out of our house.  I did call the Transplant ICU and spoke with his nurses in both the morning and early evening letting them know I wouldn't be in because of the flooding and they told me he was doing well.  About an hour after my second call, I received a call from some friends who had stopped by to visit (the wife works at UIC -- I knew she worked at one of the hospitals downtown but forgot which one) and they were with him when he was moved to the step-down unit.  I was glad they called and I was able to talk to Gary by telephone right after that.  I was a bit frustrated that in my telephone calls with his nurses, I had not been told this was happening, but was thankful for the telephone call from our friends.

Friday morning came and with it school again for Andrew and Stephanie.  I'll admit, I had been praying for another day off for them since we still had work to do in our clean up, as I'm sure many others had work left to do too in their clean ups, but the Lord had other plans for us too.  I was having a very rough start to my day, and one of my friends helped get me through.  That's one thing I've really found amazing especially this week, how God puts just the right people in place at the right times to help us "walk through those rough spots".  Anyhow, I received a telephone call from Gary that they were talking about releasing him that afternoon or evening.  I was beside myself because we were still cleaning up from flooding, had no hot water (which I already knew was going to be fixed that evening by another friend), we felt we still did not know enough about taking care of Gary or what needed to be done to our home to prepare for him to be there as well as many other unanswered questions.  I also was struggling with a lot of conflicting information that we had been given which also made me more frustrated.  Basically, even though he was getting great care from the nurses and doctors there, I felt we were not prepared enough to bring him home already, so, my friend drove me to the hospital to spend time finding out some answers, etc.  Yes, they were preparing to send Gary home that afternoon.  I tried to get all my questions answered -- some were answered better than others.  In the middle of this, Gary had to use the restroom in his room and I had gone to stand out in the hallway.  A man who worked at the hospital, walked into his room and past his room mate and looked at Gary's bed.  He came out and said to me so he's gone now right?  I said no, he's in the restroom and he won't be gone til this evening sometime since I still need to go home to get his clothes but the nurses told me to stay here until we've seen all the doctors we need to see and then go home to get his clothes.  Ends up, he was there to see if they could clean the room for another patient.  I had already talked with Peter and told him what we needed so he was going to stop at home after work and bring them down (for those not familiar with the area, we live in Villa Park, a western suburb of Chicago.  The hospital is towards downtown Chicago and although going to the hospital around midnight can take around 20 to 30 minutes, going in the afternoon can easily take an hour or more).  To explain a bit why he was checking to see if Gary had left, they were running out of rooms in the hospital and I know esp in the Transplant ICU, so I'm sure he was trying to clean up rooms as quickly as possible because a large part of the step down area had been made into Transplant ICU rooms.  I was so thankful that my friend came with me.  God has sure blessed us with wonderful support from family and friends.

Another reason we were surprised by the quick change of events was that although we knew Gary was doing really well overall with the transplants, he had been back on a nasal GI tube when I left on Wednesday with restrictions still of 1 cup of ice every 8 hour shift, on Thursday they had the tube out for the 2nd time and started him on a liquid diet (no real limit from what I understand -- NO more having to try to bribe the nurses and visitors for ice) and Friday morning they started him on solid foods -- basically anything although he basically picked at his food and ate some of it, but his appetite was (and still isn't) back.  It seemed like too much too fast.

It IS good to have him home and not to have to go back and forth to the hospital.  He's taken a few short (for what he's used to but I'm sure he'll work back up) walks outside with one of us.  I and the kids keep trying to get him to drink more fluids since that is important, but is somewhat of a struggle for him.  Right at the moment he spends a lot of time in the recliner.  He has a lot of restrictions for now.  Here are some of them -- lots of handwashing, no driving, no cut flowers, no gardening for him for 6 months and after that he'll have to wear gloves when he works in the dirt, he cannot carry more then 10 lbs (they used a gallon of milk for an example), stay away from crowds, no movie theaters was a specific item mentioned many times, make sure you use sunscreen, and make sure you take your medication (particulary the anti rejection medication) on time.  He's on quite a bit of medication -- I thought he was on a lot before, he's on even more now. 

Our first clinic appointment is Wednesday morning.  I chuckle when they told us your appt is at 10AM but come 1 1/2 to 2 hours before for the bloodwork.  My figuring is then you may as well say the appointment is at 8am, but oh well.  I know we'll be spending a lot of time down there yet for followup appointments.  They also warned us not to be surprised if he has to go into the hospital again because that is not uncommon for dehydration.  They gave us a list of when to call the doctor and who to call when.

I'm sure there's more to tell, but will stop with this for now.  Thank you all for your continued thoughts, prayers, cards, notes, meals, visits, and listening ears.  It is wonderful having such a caring "support" group of family, friends, church family and school family.

A few items for prayer:

1.  Thankful to have Gary home and doing so well and that even with the little "bumps" that will probably happen, that he will continue to do so well and continue to get stronger each day.

2.  Patience with each other as we finish cleaning up from flooding besides Peter working his regular job, and Andrew and Stephanie with schoolwork and preparing for AP exams as well as other school activities and just being Seniors in High School and making final college decisions, and Bradley and Laura with their lives in Freeport when I know at times they'd like to be here with us too.

3.  Patience for me and confidence in my ability to do the best for taking care of  Gary that I can.

4.  That we will all stay healthy because one of us getting sick would not be good for Gary.

Thank you all so much for your continued thoughts and prayers.

Love,
Nelly

A good reminder for me that I saw on an old card I was throwing out yesterday:

          God cares .... right down to the last detail  James:5:11  The Message

P.S.  Some people have their last name on their comments, some do not.  There is no way for me to know who you are if it's just your first name commenting and we know more then one person by that first name, so, if you don't mind, tell me your last too, since we love hearing from all of you?  Thanks so much.