Home Sweet Home :)

Dear Family and Friends,

Gary is home again.  He came home this afternoon -- we left the hospital around the time that a month ago we got the telephone call that started changing our lives.  Right now we're all tired and tomorrow is a big day for us with Andrew and Stephanie making Profession of Faith at church, so I will write more another time.


Hopefully, this time he'll be home to stay......

Thank you again for your continued thoughts and prayers.

Love,
Nelly and family

       I will give thanks to you, Lord, with all my heart; I will tell of all your wonderful deeds.
                                                             ~ ~ Psalm 9:1 

Two steps forward, 1/2 a step back

Dear Family and Friends,

This morning when I got to Gary's room, I wondered what had happened.  The door was wide open and the curtain quite wide open, both of which usually were closed and pulled when I had come this week.  He was laying there sleeping in a disheveled bed with leg "pumpers" on his legs (not quite sure on the correct name) that had been on his legs after surgery, but only for a short time, and a package of white stockings that had been opened but just laying there as if forgotten as someone left in a hurry, no C-Pap machine on, and no breakfast tray (wasn't sure at the moment if it had come and gone already and he hadn't even had a chance to eat or if it still was coming).  I thought to myself, what happened during the night and what were we in for today.

His nurse for the day walked in right behind me.  She had not been his nurse during this hospitalization, although she had been one of his nurses before, for which I was thankful.  She asked me what I knew of how he was so I told her how things had been when I left last night but wondered what had happened since.  We together cleaned things up as Gary was waking up and told us that he had been awake already and the C-Pap had been taken off him.  He also commented that the Doctors had already been in.  Never did find out why the leg "pumpers" (for lack of a better name) were on or why there were stockings for him, but at least things were beginning to look much more "normal" as we cleaned up and the breakfast tray was delivered. 

The day went better from there.  Although he was still needing the oxygen and the IVs, by afternoon, the IVs were off and he hasn't been needing to wear the oxygen.  As the day has progressed, he's also  eating and drinking more.  He also has taken several walks, each time a little longer -- by the time the last one was over, his nurse said now it's time to slow it down, not overdue it, and start again tomorrow.  He's also been sitting up more, which yesterday was a battle -- we kept trying to encourage it and he kept telling us it was too painful.  Thankfully his pain level has gone down considerably.  Although most things have been getting better, his temp started climbing again tonight so that now he again has a low grade temperature.

There has been some talk by his transplant surgeon that he might again go home tomorrow, but we'll have to wait and see -- this morning I thought it was crazy, and this afternoon I was getting more comfortable with the possibility, but tonight, with his low grade temp, I'm a little more hesitant again.  Yes, I would love for him to go home and not have to come down here every day, and I definitely won't miss these very warm yellow gowns, but yet I don't want him to come home too soon that we end up having to come right back, but then we don't know from day to day what will happen in any of our lives.

Thank you for your continued thoughts and prayers.

Love,
Nelly and family

                                  Know that the Lord is God. It is he who made us and we are his;
                                                we are his people, the sheep of his pasture.

                                                               ~  ~ Psalm 100:3 NIV

Yellow is the "IN" color -- :(

Dear family and friends,

As you might have figured out from the title, we're back to wearing yellow gowns when we are in Gary's room as well as gloves when we do anything for him.  Although the C-Diff is back (or possibly never totally left), at least it's something treatable.  The doctors feel that his body has become "resistant" to the antibiotic that they were treating him with so have changed to a different one.

The doctors really would like Gary to sit in a chair more and walk more to help with preventing the pneumonia from getting worse, but each time he sits up, the "sharp" pain in his lower abdomen and hips gets worse which makes him feel that he cannot sit up.  Being overwhelmed and tired, I was feeling as if he wasn't getting the "attention" to that issue that he needed since this had just begun last night as something new. From listening to rounds this morning and feeling as if they were thinking it was not an issue since between the pain medication they gave him last night and his C-Pap machine he had slept pretty much the whole night and was still sleeping when I got there around the same time they were doing rounds I felt as if they thought the issue was resolved.  By 1pm, when he had struggled for awhile and was still really struggling with pain 2 hours after the last pain pill and having taken a nap, I decided it was time to get some more answers and went to find his nurse to talk with her -- it's hard to make someone do something, even though you understand the rational for why the doctors want him to do it, when the person you love is in so much pain.  Meanwhile, the infectious doctor came in and Gary started talking to him about it and the nurse went and talked with the residents about it.  The resident came in and checked Gary out too.  He decided to talk to the Doctor above him and it was decided that they would start with an ultrasound and an x-ray and decide later if they would also need to do a CT scan of his abdomen to try to figure out if they were missing anything which they didn't think they were. They found nothing wrong and feel that the pain has to do with the C-Diff which around the same time they received the results of the culture for that at around the same time. 

They also did a chest x-ray this morning and feel that even though his cough was worse last night and this morning, the pneumonia has not gotten worse.  This afternoon I haven't heard him cough, so hopefully that is heading in the right direction.

Drinking and eating are getting  a little better, but he still has a ways to go on those, but at least that, too, is heading in the right direction.

Thank you all for "walking" this journey with us.  It means a lot to us.

Love,
Nelly and family

                           “Come to me, all you who are weary and burdened, and I will give you rest.
                                                           ~  ~  Matthew 11:28

Hard thing for me to always remember, but I keep working at it --  God is in control and we can rest in HIM!

Happy 55th Birthday, Gary

Dear Family and Friends,

I was very thankful this morning when I arrived at the hospital and got my visitor pass that Gary had been moved to the transplant unit and that he was in a room by himself.  When I got up to his room, he was in bed, sleeping.  The nurse said that he had been in the recliner chair sleeping from about 6 am to 8 am and had just gotten back in bed.  He slept most of the day -- maybe he was trying to catch up from the night in the ER and the day yesterday.  He said he had been moved about an hour after I left last night.

Last night, he was running a temperature again when I left him, but this morning, and for most of the day, it appeared that his temperature was gone.  Tonight, his temperature was back so we'll have to see how that is tomorrow. 

They did say today that he does have some pneumonia and although for most people it wouldn't be bad, but with the transplant, they do need to keep a closer eye on it.  His cough has gotten worse as the day has gone by and tonight, before we left, it was at it's worse and also his temperature was back.  He also was in a lot of pain tonight which he hasn't been for over a week, so the doctors were a bit concerned about that and gave him some pain medication and are keeping an eye on it. 

We were told today that because of the pancreas transplant, it is not at all uncommon that he is dehydrating and having to come in the hospital -- it takes about 6 months for it to all adjust.  Also, because of his height he actually needs more fluid than most people with pancreas transplants (our dutch heritage is showing up).  I have to chuckle at how often comments have been made about his height (6' 2") as well as the heights of the kids with an after comment of "and you're not short either" (although I don't think of myself as tall) but, there are a lot of different nationalities of people working there and most are my height or shorter, I guess, when I think about it.  Anyhow, because of his kidneys hardly working before the transplant and therefore, not being able to drink a lot, it's an adjustment trying to figure out how much to drink as well as getting your body used to drinking a lot more.

Right now, because he doesn't feel good, he has no appetite or desire to drink, although we keep encouraging him to try a little but place more emphasis on trying to at least drink some.  I've learned to keep asking the nurses for juices since for some reason the food trays and paper menus they have us fill out for his menu don't have anything but tea, coffee, and milk and he's not a drinker of any of these, although since the transplant, he does drink at least some milk.

The highlight of the day was when Peter, Andrew, and Stephanie came with a bunch of helium balloons all with significance for Gary -- a big Taz one (we've all been trying to find him one since surgery since he's a big Taz fan and long ago nicknamed Bradley, Taz), a Garfield Happy Birthday one (He's always liked Garfield), a dog Happy Birthday one (he's a big dog lover, but we don't have a dog), and a Smiley Faced one with band aids all over.  Peter hung the Taz one on the foot of his bed.  He still did a lot of "napping" while they were there and the pain pill was starting to take effect when we left, it seemed.

I also had wrote Happy Birthday Gary on his white board along with some cakes and candles and made sure that most of the people who came in his room today knew that it was his birthday -- wanted to try and make his birthday special somehow.

Well, I'm very tired, and it's long time for bed for me, but wanted to update you on his day.  I told him that many of you had wished him Happy Birthday on Facebook and he seemed to think that was cool.

Thank you again, everyone for your thoughts and prayers.

Love,
Nelly and family

                                                   You are my strength, I sing praise to you;
                                                               you, God, are my fortress,
                                                             my God on whom I can rely.

                                                                      ~ ~ Psalm 59:17

Exhausting Day! Restful Night?

Dear friends and family,

I am very tired after being at the hospital last night til sometime in the early morning and then again all day, but want to write at least a quick update.  Thank you all for your continuing prayers.

Gary still is not feeling well.  He is running a temperature, somewhat dehydrated, at times dizzy and lightheaded, fighting a cough, and appears to have a small infection in his lungs.  They have also put him back on oxygen to help with his breathing.  Although none of these are major, because of his transplant, they want to treat it all before it gets out of hand.

Today he had a special visitor, a college friend who had a liver transplant about 9 months ago.  I think it was really good for Gary to be able to visit with him and it was also helpful for me.  It's also been good for me to have been able to talk at various times with his wife over the past few weeks. 

Things to pray for:

1) That he will finally be moved to the transplant floor and to a room by himself so that he can rest better.  He was put on the Oncology floor last night probably due to the transplant floor being full and had been told several times today that he would be moved to the transplant floor.  When I left tonight, they said he would be moving tonight or during the night.  Although the nurses on the Oncology floor have been wonderful, he is in a room with a patient who loves to talk "loudly" and is pretty much is on the telephone all the time and it has been very hard for Gary to rest.  Pray that the move will happen soon (if it has not already happened) or that if he isn't moved, that he will be able to ignore the "noise" and have a restful night of sleep.  You get frustrated with him and then all of a sudden he might say something to you that makes you realize that even in all of his "talking" he's also watching and listening, so help us to be good Christian examples to him.

2)  That the doctors will be able to help us get through this "bump" and that he will be able to eat and drink enough so that when he gets home, he won't get dehydrated again.  We've learned that the Pancreas dehydrates quickly.

3) Pray that the rest of us will also have restful sleep tonight.

Thank you all so much for your thoughts, prayers, phone calls, visits, meals, rides, etc.  They are all very appreciated.

Tomorrow is Gary's 55th birthday so I'm praying he has a wonderful day!

Love,
Nelly and family