Home!

I guess I should tell you that we are home from the hospital.  Terry had a few days without fevers and home health care was available and scheduled so that we could come home Saturday afternoon.

We saw this on our way home ..., just up the road from our house.  It's cold and that icicle proves it!

We had a great home health care specialist come help us and teach me about each of the three IV antibiotics that I have to give here at home.  They are all different than I have given before, but one does use a pump like we have used before.   It would have been really difficult to figure it all out on my own and he was a very kind person. 

As for Terry's first night at home ...  it was kinda crummy.  He didn't sleep well, had some pain and a fever this morning.  We knew we should not be out among others today so we stayed home trying to keep him warm and comfortable and away from illness as much as possible and gave him his IV meds on schedule. 

Next doctor appointment is Tuesday unless something unforeseen happens (and we are praying that it doesn't).


Now I'm going to step back a few days and share a couple photos from the hospital because I don't want to forget them.  The first is of Turner with his grandpa.

This next picture is of Elsie and Michael fixing the slide we gave her for her birthday.  And then one of her enjoying the slide...and she does!  ( I stole that photo from Tawnee's Instagram)

So, it's Thanksgiving time of year and I am almost feeling compelled to list a few of the things I am thankful for today. 
I am grateful that Terry was able to come home.  I am thankful for Terry!  I love being with him.  I am thankful for our home and the comforts within it.  
I am grateful that we had a good home health care specialist to help me learn my new responsibilities.  It's so much easier when you feel comfortable around a stranger in such a time as this.  I am grateful for doctors and medicines that help cure illness and help prolong life. 
I am thankful for life! 
I am thankful for every member of my family!  I love to see them smile!  I love happiness!  I am so grateful that we are an eternal family.  I am thankful for love. 
I am thankful for the Savior and for the peace and comfort that He sends our way in time of stress and frustration and pain and sorrow.   I am grateful for His servants, His Prophets and Apostles and for their inspiring messages, especially those given this last general conference.   I am grateful for every opportunity to be better than I am or have been, and for those things that inspire me to do so. 
I am thankful for the priesthood and the powerful blessings that we receive through worthy priesthood holders. 



Oh!  One more thing ...
We have Connor's release date ...
December 17th.  This makes our hearts rejoice!

Two Weeks!

Terry is still spending his time in the hospital.  So I thought I'd share another picture of the view from his window, two weeks later (first photo here).  There is a little more color out there and it was beautiful in the sun today.



Terry still has fevers and this morning had a really bad chill and long lasting rigors that made the rest of the day pretty crummy. 

Doctors are hopeful that the meds they are giving him will do the trick in a few days.  They are also checking for a line infection and if there is one they will pull out the Hickman line.  We hope that is not the case because it is so much better than poking him, especially since he bruises so badly each time they do.  The doctors are also wondering if the high fevers will just be a common occurrence for Terry at this point.  There are still no definite answers so we are just taking things one day at a time ... as usual. 

As far as doing better ... it's hard to say from one day to the next.  He had a really good Sunday, but a not so good Monday.  Whatever I say will be wrong as soon as I say it.   The doctor told us today that he thinks we can get him home before Thanksgiving.

He is somewhat in isolation.  If anyone has a cold or other illness or any symptoms they shouldn't come in his room.  Everyone is to wash up before they enter the room and I have noticed that the nurses and doctors are really doing a great job at that. 

News update from the hospital...

I suppose it's time for an update on Terry.

A few days ago the doctors started exchanging Terrys IV meds for oral meds in preparation for sending Terry home this weekend, but a couple days later he started getting worse (more fevers and worsened chest/lung pain), so he is still in the hospital.

They switched some meds back to IV and if things go well they might consider sending him home Tuesday. He is still getting fevers a couple times a day so we just don't know at this point what to plan on.

I spent the night (Friday night) since Anthony was with the band in Auburn so I'm writing this on the iPad with no knowledge of how to add an image, but I can write a quote, so here is one of my last pinterest saves.

F E A R has two meanings:
Forget Everything And Run
Or
Face Everything And Rise
The choice is yours.


It's been a rough 11 days so far with ups and downs, but we are doing all we can with what we have control over.  I'm trying hard to face everything and rise because the other option is not pleasant.

We continue to pray for better health ...
We thank you for your prayers in our behalf.
And, we send our love your way.

Have a good weekend!

Overdue Medical News

I am really sorry that it has taken me so long to post.  I have been slacking on posting, but not in caring, and I realize that it is time that I share part of what has been going on with Terry's health, and we are definitely going to post something more than the blood counts and transfusions that have become quite ordinary in our lives of late.  Those things still took place but I guess we needed to jump outside that box for a different ride, and oh what a ride we are on.

I tried to keep a daily log, but didn't really want to blog it from the beginning, but now that we are several days into it, it seems easier for me to share.  So, hang on for this ride with us if you choose to continue reading.  However, at the moment this is not the daily info that I previously logged, but a short version.  I might come back later to add the daily logged info, but I don't have time for that tonight.  Even the short version is long enough.

Friday night (Oct 24th) Terry had one of those terrible trembling shakes and chills which led to a fever of 102.8 (anything over 99.9 is not good so this was alarming).  We got this down with Tylenol, a cold damp washcloth rubbed around on his head, and cool drinks of water.

He had daily fevers (up to 103.8) all that weekend and we tried to reduce them as quickly as possible. There were other symptoms that kept us concerned, which included a sore on his outer calf of his right leg that kept getting worse (larger, redder, and more painful) and a pain in his upper left chest (similar to the pain one feels with pneumonia but higher).

We kept our Tuesday (Oct 28th) doctor appointment and went prepared to be admitted to the hospital.  Terry needed the 2 units of reds and 1 platelets, but also needed some IV antibiotics so we went to Central Wa Hospital for those needed transfusions and to stay a few days to determine and treat the
other problems.

This was the view from his window the last few days.  This is pretty on a sunny autumn day, but it's been raining or overcast most of the time.

There were several doctors questioning Terry and tests that took place the first day, but then things seemed to slow down, and we kept hearing what it could be or might be and probably was or wasn't. 

The fevers and pain in the chest continued in the hospital and soon it was both sides of his chest.  IV antibiotics continued and more were added and oral meds were added, as was PCA (pain medication at the push of a button as he needed).  Platelets and red blood cells were given almost daily.  They had him start wearing the oxygen hose Thursday because he was in enough pain that his breathing was very shallow.  His stamina was lacking, if he had any at all.

After a couple days, his leg sore (cellulitis) began to look better and better each day but the other problems remained.  It became apparent that he indeed had pneumonia and that he also had two spots in his lungs that looked like bacterial or fungal infection.  They treated for that and Terry is beginning to feel better now.

FYI - Our last two Halloween days have been spent in a medical facility.  This post includes photos from this years holiday/2014.  If you wish you can click HERE for the post from last year/2013.

Elsie is trick-or-treating but nervous that her grandpa is in a patient costume this year.

Michael, Elsie, Tawnee

Anthony, Auger, Akleigh, Thomas & Boston, Dana,  and Terry.

And here is another photo from the trunk-or-treat Chase participated in with the Car Club at Walmart parking lot in Wenatchee this year.  Fun stuff!  I guess I should have posted this earlier so I could wish everyone a Happy Halloween!  Hope you had a fun one!

Dana & Boston, Thomas & Akleigh, Anthony, Auger, Chase

Okay, back to the medical news...
Terry looked really good today (Nov 3rd).  The leg has improved a lot, but still has some redness that they think is just petechia (pe tee kee i).  The pain in the leg is gone.

Terry had no fever last night :) and we hope it remains that way.  He has not used the PCA med for two days so it was disconnected, his chest pain is lessoning, and they removed the oxygen today.  

The nurse walked in and saw Terry clipping his nails this morning and got so concerned, almost begging him to stop, but told him to be super careful because his platelets were only 10.  ;)  We assured her that he would be careful, but the very fact that his platelets were 10 was a good reason to clip his nails today.  (He hasn't seen 10 for a long time, but we know that is because he has been given platelets daily for awhile.)  It became a fun moment that we smile about now. 

He had a pretty good day today but we don't know when he comes home.  We know they need to continue treating things so that they clear up completely and don't get worse, and we are taking it one day at a time. 

Our laptop crashed awhile ago so I only have the ipad at the hospital and it's too hard to post from that, so I cannot promise when I'll post again since my time at home is so limited.  We hope he will be home in a few days, but it's best that we make no promises, even though we wish we could.


I'll close with a quote Connor shared in his letter today.

"The words of the Lord are found in the scriptures and the teachings of the apostles and prophets. They provide us counsel and direction that, when followed, will act like a spiritual life jacket and will help us know how to hold on with both hands."

This quote is from M. Russell Ballard, "Stay in the Boat and Hold On!",  General Conference October 2014


Oh!

HAPPY NOVEMBER!

Friday

It's too late to think, but I'll share a little bit about Terry's health condition ...

His blood counts were low again today and they didn't let him come home.  He slept a lot of the day and began a red blood cells transfusion this evening.  They plan on giving him 3 units and hope to let him come home tomorrow if his counts look good.    

I wish I could say it's all better, but it's not.  We'll see how things are in the morning.

That's all I feel like writing today because I still have some work to do on the prom dress and I'm too tired to spend time at the computer, and it's already late, but just wanted to share something.

Maybe there will be a photo of BJo in her dress tomorrow.  ???  One can hope!

A Quick Report ...

Terry said he began feeling better yesterday evening.  He slept so much yesterday that he didn't sleep much the first half of last night, but did get to sleep the second half.  He read a few messages in the Ensign but has not had the TV on.  (Can you tell I am amazed that he hasn't had the TV on?)

Today was a pretty good day. I didn't get there until about 1:30pm, so I missed his morning, but he said it was a good one.  I was happy to be able to spend the afternoon and evening with him, leaving sometime around 7:15pm. 

We walked around the halls this afternoon and he wasn't as tired this time as he was last time and we walked two to three times as far, so that is improvement.  :)

I did however notice that his face was getting flushed after they started the antibiotic this evening (about 6:30pm).  It could just be a simple reaction with no issue, so that's what I'm hoping for.    He is trying to coax the doctor into letting him come home tomorrow, so we'll see how that goes.  We would still have to infuse antibiotic and hydration at home.  

We're happy to have a good day and look forward to another ..., and another ...

Hospital Day 3

I got in bed without posting and had to get right back up to accomplish this task today.  So I hope this makes sense. 

I guess it was a good thing I couldn't call Terry yesterday evening because he was in no condition to talk to me.  He had an infusion of platelets yesterday afternoon and then in the early evening had a fever and another trembling chill and was throwing up. That isn't better!  I will have to admit that we should be glad that we chose to go to the hospital and not do this at home, especially since I was in ML (thinking he was doing well) last night and there would have been no one at home to help care for him.  I'm sorry that he is in the hospital because it's never comfortable, but I am pleased to have someone there to care for him when I cannot be - and we have some busy days this week.    

Today's plans include an additional IV antibiotic and a red cell transfusion (HCT is 18) which he was getting when I left at about 1:50pm.

Dr. Smith came to see him this morning for a couple minutes and made the comment that he had to have no fever for 3 days before he could go home, so that is somewhat discouraging since he did have a fever last night and I heard that he may have had a low grade fever this morning.

I arrived about 8:45am and wasn't there for Dr. Smith's visit but I was there when Dr. Miller (Dave) came in and asked Terry how he was doing and Terry responded saying that he felt like he needs help.  He still doesn't feel very well, has no energy to get up and do much walking and he sleeps as much as possible, day and night.  I thought he would get restless and bored and tired of watching TV.  Well, he hasn't had the TV on since he has been there and he has only read part of an article in the Ensign.  He rests and he sleeps!  And he needs it!

Dr. Miller assured us that though they are waiting for tests to return, they are giving him the correct meds at this point - one IV med takes care of MRSA, another takes care of everything else, so he is covered that way. They are still obviously concerned about the sinuses and have tested for fungal infections.  We don't know what infection is present, but we do know that there is one.  It is common that even 50 percent of the time they are unable to locate the type of infection, but they are still able to treat and fix the problem.  They are also giving oral meds and nasal sprays and the blood products to help combat whatever it is that is causing the problem.

I had to leave early again this afternoon to take BrittanyJo to Kennewick to pick up her prom dress and some hiking shoes.  We had a bit of a run around, but we got them both.  I have an insurance meeting in ML tomorrow morning before I can go back over to see him.  I hope things will be looking better by that time, but I will probably miss the doctor coming in to visit.  Oh Bother!  

We are taking it one day at a time ..., because it just can't be done any other way.  At least I've never known it to be a possibility.  If you have a trick that takes care of more than one day at a time please let me know.  :)

have a good night!

Hospital Care

I left to see Terry after the kids left for seminary this morning and by the time I got there he had finished his breakfast and had a chest x-ray.   He is still weak and tired but no longer having the trembling chills.  He does get cold and needs an extra blanket but does not chill to the extreme like before. 

He showered this morning and put on clean pjs, had lunch, and we took a walk around the hallway, then he got back in bed.  He was feeling sleepy by about 2:00pm when I had to leave so I hope he got some good rest before they bugged him again.  There are always so many interruptions during the day in a hospital, making it hard to believe that one can get better rest while there, rather than at home. 

The doctor came in while I was there this morning and his biggest concern seemed to be Terry's sinuses - they are still bad, and we have known that, but nothing seems to help.  This doctor wanted to talk to Dr. Smith and get a stronger antibiotic for him.  I don't know if that has happened yet, or if for some reason it cannot happen, but I'll be anxious to find out tomorrow.  I have been gone with the kids all afternoon and evening so I haven't been able to talk with Terry and don't want to call now in case he is sleeping.

I hate not being there with him all day, but we decided that I should come be with the kids and take care of the responsibilities here since this week is so over scheduled anyway.   And remember, it is not a life or death situation, so I'm not worried that something critical will happen while I'm away.  I just miss him.  We haven't been apart this many hours in a day for a very long time.  Crazy huh!  I don't like it!

We don't know when he will be able to come home, but I'm pretty sure it's not tomorrow.  Dr. Tucker mentioned 4 or 5 days.   Things better speed up around there if that remains true.   

As we were talking this morning he remembered a special moment years ago after being diagnosed with this disease when the Lord told him - "I know you, I love you, and you will be alright!"



image found here

:)  good night!

Another Medical Adventure

We went to Wenatchee this morning for the first of the five Vidaza infusions this week.  Terry began chilling again on our way there and was still trembling when we arrived.  I am so sorry that this happens to him but I was glad it happened so that they could see it.

These chills are not just chills that cause him to feel cold, they cause his whole body to shake and tremble making it easily noticeable, so the receptionists and nurses quickly went to work to help however they could.

As we sat in the infusion room I had the thought that it's going to be a good day if we can get this figured out. We will be here every day this week for Vidaza infusion, so they can keep an eye on him. I liked that!

One nurse contacted Dr. Smith, who is in Moses Lake on Monday's and she wanted Terry to be seen by a doctor here, so we saw Dr. Tucker.  After visiting with him for a few minutes we learned that he wanted us to go to the hospital for twice a day antibiotic infusions. We tried to talk him into letting me infuse at home, but he wasn't thrilled about that idea and didn't want to agree to it.  I suggested that we could come to the clinic every morning for the morning infusion where they could get his vitals and blood draws and check him however they felt necessary and then I could give the evening infusion at home.  We assured him that I have been doing infusions at home, even up to 5 times a day, but he still thought I might kill him and didn't want to agree to it.  Really!  He suggested that if we were okay with him dying on our watch we could do that.  Oh Bother!    Just to assure you - this is not a life or death situation here!   But we did agree to go to the hospital, because yes we do want him around for BrittanyJo's upcoming graduation, and we didn't want to feel anymore feelings of guilt or inadequacy.  He does seem to be a fine doctor though - I think Dr. Smith told Dr. Tucker that he was going to have to lay it on thick and strong if he was going to get us to agree to hospitalization ..., and so he did! 

Terry will no longer receive Vidaza this week and is presently in a room at the hospital until this infection is cleared up.  So much for the good day I was feeling when our favorite nurses were caring for him. 

We were sent to the world of waiting again, where it seems everything is done in slow and hardly steady motion.  It seems to take hours to get anything done in a hospital, unless it's vitals and then that is too often.   Oops! I'm complaining a bit, aren't I?

Well, I had to leave Terry early this afternoon so I could fulfill some assignments we had at home - we really thought we'd only be a few hours this morning so we had promises to keep.  I left about 12:15,  just after the hospital doctor finished up and just as the lab assistant came in to take his blood. 

I talked with him this evening and he is doing fine - but I already knew that didn't I?

He has had a CT scan and a couple bags of antibiotic. 

Please remember that he is fine and that there is no need to worry.  I hesitated to share this info, especially since I know it would make Terry a bit uncomfortable, but decided that it was the right thing to do since I have promised to share our medical life with you, and if I also let you know that we are all doing fine and we are not in need of anything at the moment.  However, we would never turn down a faithful prayer. 

Thank you!
I'll keep you posted!
Love to all ...

image from here