Food, Glorious Food

Gary was happy when the doctors asked him this morning if he felt he was ready for food.  Sunday he had been put on a clear diet and yesterday on a full liquid diet.  He was thrilled to finally get "real" food!

He had more energy overall today too and by the time I left tonight, we had taken three walks.  His walking was much better today although someone still needs to be walking beside him and helping to keep him from veering into things. Tonight was the first time it was just me walking with him since before they always wanted someone on each side of him.

Although he is still in the Transplant ICU, his status as if tonight is now considered ICU Step-Down because he doesn't need as much care from the nurses and he doesn't need to be watched as closely which is also a sign that he is heading in the right direction.  For as quiet as the ICU was on Saturday and Sunday, yesterday and today were both busy and there seemed to be a lot of turn around of patients. The doctors and the nurses are all very happy with his progress.  He has spent both yesterday and today sitting up rather then in bed which is good, but he does tire very easily and so naps in between doing things.  We do not have any idea yet when he will be coming home, but it would not surprise me if he gets moved into another room if the Transplant ICU continues to be so busy and more step-down rooms become available.

We are so thankful to all of you for your continued thoughts and prayers and for being there for us in so many ways and for "walking with us on this journey". God has truly blessed us!

For I am the Lord your God
    who takes hold of your right hand
and says to you, Do not fear;
    I will help you.

~~Isaiah 41:13 NIV

Very Tired!

Today was a very busy day in the Transplant Intensive Care Unit. I counted at least 5 new patients appearing to come from surgery of some kind to be admitted. For Gary it was a much quieter day. He seemed to be tiring out very quickly so did a lot of sleeping.

He took two walks today - one with his nurse and I and one with Peter and I. Although they were shorter then the one walk yesterday, combined it was a bit longer. You could tell he was tired each time and ready to sit. He did sit in a recliner all day and not lay in bed, which was good for his lungs.

Thankfully he has not had any hiccups today. He has been having them off and on, so I was sure hoping that they would not get as bad as a friend of ours who recently had surgery seemed to have them.

He still is dealing with a lot of pain and still has a ways to go. There are times I get discouraged but then one of the nurses will say something that they see improvement on from when they saw him a couple days ago that maybe I haven't seen since I have been there everyday, and I realize he is improving.

All the surgeons, various doctors, nurses, and nurse techs in the Transplant ICU have been wonderful. All in all it was a good day.

Thanks to all of you for your continued thoughts and prayers and the various ways some of you have helped us with rides and for "walking with us" in so many ways.

The following verse was part of my devotions last night and definitely a good reminder for me that I need to keep giving all that is going on in our lives to the Lord. He has shown, and continues to show, that he is with us all the time. 

 Cast all your anxiety on him because he cares for you.

~~ 1 Peter 5:7

Annnnddd we're walking!

Stephanie posted the following on Facebook:

"Thanks everyone for all your prayers! Dad is making good progress on his recovery. I got to help him take his first walk around the nurses' station today"

It was sure nice to have Stephanie home for the weekend.

And so we know and rely on the love God has for us. God is love. Whoever lives in love lives in God, and God in them.

~~1 John 4:16

Answer: Surgery at UIC -- Question: How Gary "Celebrated" the eleven month anniversary of his Transplant Surgery!

Gary always enjoyed watching Johnny Carson especially when he would have a Carnac segment, hence the title of this post.

Tuesday morning, I woke up to the sound of Gary vomiting. After trying for most of the day to keep him hydrated, it was decided that we needed to bring him to the UIC ER. We assumed that he was dehydrated, and that more then likely it would be a long night of waiting, and from past experience he would probably be admitted sometime during the night for observation and that Peter and I would be coming home in the forecasted heavy snowstorm.

As the evening went on, they began to suspect appendicitis. They finally admitted and brought him to a room at 5am, but they were not sure what time surgery would be yet, since he had to be fit into the schedule. We all tried to sleep for the next few hours, but as I am sure most of you know, hospital sleeping is not very restful or comfortable.

By mid morning we found out that the Transplant surgeons would be doing the surgery and that they were figuring they would more then likely be able to remove the appendix laparoscopically which would take about 45 minutes to an hour, but if they ran into too much scar tissue, they would would have to open him up, so it would take a little longer.  We did all have a bit of a chuckle that surgery was happening 11 months to the day and almost at the same time as his transplant surgery had happened.

They took him into the OR room about 12:15 PM.  We decided to eat lunch and then wait figuring the surgery wouldn't be long. We were waiting and waiting and having trouble finding out what was going on. After waiting about 2 hours we found out that he was still in surgery but that his surgery hadn't started until 1:09pm.  We started assuming that they must have run into scar tissue and so assumed they had to open him up.

When it started becoming longer, the messages were "he's doing good but still in surgery", but slowly we were being just told "they are still working on him". It was after 6pm when Peter and I were called that the surgeon was ready to talk to us while Gary was being closed.

Surgery ended up being more extensive then originally thought. The surgeon was very good at explaining what all happened and even drew a picture to help especially me, understand more. The inflammation had spread beyond the appendix to the Cecum and surrounding Colon tissue.  Seeing this, they needed to perform a Right Hemicolectomy along with the Appendectomy, which involved taking the Appendix, Cecum, and part of the Colon and then reattaching the remaining portion of Colon to the Small Intestine. The doctor also explained that it had turned out to be very major surgery and possibly rougher on his body then the Transplant Surgery he had 11 months before.  Gary's transplanted Pancreas, which was placed right behind that area, had not been affected, and that his transplanted Kidney looked fine. The doctor also told us that he would be putting him into Transplant ICU rather than the step-down unit as he had originally been placed in and expected to return to. It was still about 1 1/2 to 2 hours before we were able to see him.

Shortly after we saw him, Peter and I went home exhausted. We had no idea what we would find since there had been quite a bit of snow since we came in the evening before so it was a very, very nice surprise to find the driveway shoveled and we could pull right in.  We have wonderful neighbors!!! Thank you so much whomever helped with that!!!

A good friend brought me in on Thursday morning on her way to work in the city, and Peter was able to go back to work.  Gary was in a lot of pain all day and did not seem to have processed all that had happened. In the morning, the nurses were having trouble with the pump that would give him his pain medication and they finally had it working correctly in the early afternoon. I kept noticing that it would stop working every time he would push the button, so I finally asked the nurse he had whether he was even getting any of the pain medication because of the pattern I was seeing. I think she didn't realize that I understood how the machine worked, since she explained that if he would push it before it was time, he wouldn't get any and she didn't seem to understand what I was trying to explain. Shortly after, one of the many groups of doctors came by to see us and I explained again and some of them did understand. Another nurse was able to fix the machine with a "new set of eyes", but as one of the doctors said, he is probably having to catch up in the treating of his pain.  His right lung also partially collapsed so we need to work hard on his breathing as pneumonia can become a complication from that.

Today, Peter brought me in and went into work late. He is looking much better and is not in as much pain, but still has a ways to go. He is doing better at breathing and using his "after surgery blowing machine".  If you've ever had surgery you know how much fun those are when you are in pain, but Gary is slowly getting better at it. They also took him for a CT Scan which really tired him out. This afternoon they had him sitting in a chair to help with his breathing which will help the lung to re-inflate.

Gary is getting better, but his recovery will be longer than initially thought.  He is still in the Transplant ICU, still has tubes and IVs that he is attached to, but he is on the road to recovery.

Some of the things we are so thankful for:

1) We are glad we followed protocol and came to UIC ER so Gary would not have to be transferred to here.

2) We are thankful for the Transplant Team of surgeons which made the long wait even more bearable because we knew that they would be doing all they could to protect the transplanted organs and as we often hear in the ER and have also experienced, "They are very protective of THEIR Transplant Patients".

3) Very thankful for all the thoughts, prayers, words of encouragement from so many of our family, extended family, our church family, and many friends.

4) So thankful that Gary's transplanted organs are still fine and working well.

5) and so many other things that I am sure I am missing.

Thank you once again for "continuing to walk this journey" with us. It means a lot.

 “Come to me, all you who are weary and burdened,

and I will give you rest."

~~ Matthew 11:28 NIV

There's No Place Like Home

Dear Family and Friends,

I had started another post during the day today, but at this point, I haven't finished it, and, I am not sure if I will or not, but know I do not have the energy to do it tonight.  It was good, though, for me to process some of my thoughts at least.  It has been a very frustrating and draining 36 hours, but, I am happy to say, we are HOME AGAIN and THERE IS NO PLACE LIKE HOME!!!  In some ways we need to look at this as a "Bump on the Road in our Transplant Journey" but in other ways it's been a very frustrating "Bump" that has left, especially me, with many "unanswered" questions to things that we have been so "carefully" doing in taking care of Gary since his transplant.

Anyhow, the great news is that he is home and the "bump" was very minor, and no answers as to why he got sick.

We are thankful to all of you for your continued thoughts, prayers, and notes of encouragement.

Love,
Nelly, Gary, and family

Give thanks to the Lord, because he is good. His faithful love continues forever.

 

~~ I Chronicles 16:33-35

 

A Bump on the Journey

Dear Family and Friends,

Just a short note to let you know that Gary is back in the hospital at UIC.  He started vomiting shortly after taking his medication Thursday morning, and because of all of that, they had me bring him to the ER for bloodwork and to rehydrate him.  They decided to admit him so after finally being brought to a room around 11PM Thursday night, it was around 12:30AM when I got home.  I am hoping that this will be a short stay.  

Thank you for keeping us all in your prayers and continuing to walk this journey with us.

Love,

Nelly, Gary, and family

And my God will meet all your needs

According to the riches of his glory in Christ Jesus.

~~Philippians 4:19 NIV

Adjustments

Dear Family and friends,

It's been quite some time since I have written on here.  Mostly because Gary has been slowly but steadily, gaining strength.  Now, having said that, it hasn't been as if everything is all the way better, it is more that as we have, as we had before the Transplant, learned how to help Gary as well as how to notice and anticipate, for the most part, what and when Gary needs something.

Friday was clinic day.  We had gone in two weeks before for bloodwork, and this time we were here for both bloodwork and follow-up transplant clinic appointment.  We didn't expect any thing drastic, just basically a "you're doing great" appointment and "it'll just take time before you start feeling all the way better and have more energy."

As the Doctor went over Gary's bloodwork from the morning blood draw and compared it to all of his previous bloodwork, she commented that there was trace or small amounts of blood in his urine in all his past bloodwork.  She also told us that when he had had a kidney ultrasound in April while in the hospital, they had seen some kind of a spot on one of his own, nonworking kidneys. When they did the transplant, they left in the old kidneys and the old pancreas.  It was felt there was less chance of infection or other problems in keeping them then taking them out.  She decided that an MRI of his kidneys should be done to make sure that the"spot" wasn't causing the trace or small amounts of blood.  She also felt that because of his continual tiredness,  they should add more iron tests on the blood that had been drawn that morning.  They were able to schedule his MRI for Monday morning.

Gary asked whether he could do more things like mowing the lawn.  I was surprised when she told him that he could and that she didn't put any restrictions of at least wearing his hat, sun screen, face mask, and gloves.  I was going to ask about any of those restrictions, but by then the discussion was already on to something else and then it wasn't until we were driving home that I remembered that I hadn't asked.  I decided we would use common sense.  I have also realized, the more I thought about it over the weekend, that the nurses in the hospital were more insistent on wearing a hat, sun screen, face mask,or gloves   The doctors have seemed a bit more lax, not that they don't care, they also don't want people to live in bubble.  So, as we have been doing since the Transplant, we'll look at both sides, you might say, and "go down the middle of the road".  Guess who mowed part of the back lawn Saturday night, you've got it -- Gary, although it definitely wore him out.  I think it felt good to him to be able to finally be able to do something.  He mowed another part of the back yard on Tuesday afternoon and finished the back yard this afternoon (Wednesday).  Our back yard isn't huge, but for him, it took a long time and each time it wore him out.

Monday morning found us at another UIC location down town to have Gary's MRI.  Our appointment was at 8am but it was 11am before we were done there.  Then it was off to the clinic which is by UIC hospital to have an iron infusion.  The results of Gary's blood work on Friday showed that even though he takes 3 iron pills a day, his iron level is still very low and the Doctor feels that he needs to have iron infusions.  The nurse told us that the Doctor ordered 10 infusions -- 1 infusion a week.  He had his first iron infusion on Monday.  It took about 3 hours for the 1st infusion.  He will have his 2nd infusion on Friday morning because the infusion nurse will be out of town for 2 weeks so it was felt that he should have 2 this week.  So, it looks like we'll be spending a lot more time and days at UIC again.  We have not heard any results yet on the MRI and I'm not sure when we will hear for sure.

They also are eliminating (need to go from 3 to 2 to 1 a day over a 2 week period) one of his medications that was helping to stabilize his blood pressure i.e. help his sitting and standing blood pressures not to be so far apart.  It was also to help with the dizziness he experiences (he still does experience dizziness even though the numbers are somewhat better).

We still are taking his blood pressure (both sitting and standing) each morning as well as his pulse, temperature, and blood glucose.  It's still amazing to all of us how great his blood glucose numbers are and how stable they are after having been a Type 1 diabetic for 31 years with numbers all over the place now that he has a working pancreas.

Some things to pray for:
1) That there will nothing seriously wrong on his old kidney.
2)  That they are able to figure out what is causing the trace or small amount of blood in his urine tests.
3)  That the iron infusions will help to make him feel better and give him more energy but also to bring his iron levels to where they should be.
4)  Strength and energy for me especially since Stephanie and Andrew will soon be leaving for College so they won't be around to help me out.  Also, that I won't let the discouragement take hold.
5) Pray for adjustment to having Andrew and Stephanie leaving home for college, for them to have a good transition and great room mates, and for us to adjust to them being gone from home.

I apologize for taking so long to write, but I've been very tired and I'll admit, somewhat discouraged with this going on even though I know it is not nearly as serious as what some of our friends are going through.  Please continue to keep us in your thoughts and prayers.  We appreciate them very much and appreciate that you are "walking with us on this journey." 

Love,
Nelly and the rest of the family

Come to me, all you who are weary and burdened, and I will give you rest.

~ ~ Matthew 11:28 NIV