Grieving period

I know many of you are wondering how I'm doing. I'm doing ok. I feel the need to stay holed up in my house. I think I need this to try to work through everything and hopefully let it sink in that Glenn is actually gone. So please be patient with me during this time. I miss you all as much as you miss me, but I think if I don't follow my instincts now it may postpone my grief period. And please don't be offended if you call and I don't answer,  just please leave a message.   Thank you so much to all of you for your continued love and concern. It really is a comfort. Eda

Memorial Service Details

Glenn's memorial service will be this Tuesday, July 7th at 6pm at Argyle Church of Christ in Orange Park. Thank you all for Thank you all for your prayers, encouragement, and well-wishes.

It Is Finished

Glenn E. Boyles finished his work here on earth today, July 2 at 5:00p Arrangement will be  announced in the next day or so.
I have fought the good fight, I have finished the race, I have kept the faith. Now there is in store for me the crown of righteousness, which the Lord, the righteous Judge, will award to me on that day-and not only to me, but also to all who have longed for his appearing.

Two transfers

Glenn was sitting up in the chair this morning when we got to his room. He was sleeping most of the time but tolerated it well. He had an uneventful day and was transferred to a room out on the floor. When he left CCU he had a little rattle in his chest but not enough to be concerning. As the evening went on his breathing became more rattled and labored. He has just now been transferred to ICU, (1:00AM). As always I will keep you posted. I'm asking for no visitors and you can call and leave me a message, but I am not answering my phone.  Instead, keep watching this blog for updates. Thank you.

Was that just yesterday?

You guys are all great! Thank  you for your love and support for Glenn and me. He made it through the night just fine. Today he was extubated, got the NG tube, (stomach pump) out, and a couple IV lines. He is pretty groggy and doesn't remember anything up to this afternoon.  And probably tomorrow he won't remember today. Anne-Marie arrived this morning and Joey got here this evening. As I said in the last post, we just wait and see how each day goes. He was stable tonight when we left and I have great confidence in the staff at the hospital. I can't believe all this happened just yesterday and today. Since we were all up most of the night, it seems like it was one long day, and yet seems like days have passed since all the events of yesterday. I'm pretty much seeing cross-eyed from sleep deprivation so I will cut this short. I think I've pretty much covered everything up to this point. Thank you all for your great love and support poured out on us at this time. It means everything to have all of you caring for us the way you continually do.

Now we wait

Monday at dialysis Glenn had another GI bleed so he is back in the hospital. He was found to have a perforated bowel. He had emergency surgery Monday night and is now in CCU. The Dr. has given a grim prognosis. I will try to keep you all posted but please no phone calls for now. The kids will be here in the next day or so. Thank you for your love and concerns. Now we wait.

Ahhhhh. Sigh. Home

We finally got out of the rehab place and home by about 6 o'clock yesterday after waiting the day for the nurse practitioner to get there to discharge Glenn. We were told that the Dr. would be there early in the morning to do that, but we waited patiently until 4 o'clock when I took the rest of our stuff out to the car and pulled the car up to the front door because we were just going to leave. While I was out in the parking lot I saw two cars in the Dr.'s parking space. So I went to the desk and the nurse practitioner was there to do the discharge. We waited all that time because if we let the Dr. (or whoever was going to do it) discharge him they would write prescriptions for pain meds and a wheel chair,and set up home health care and PT. Otherwise we would have to try and take care of that ourselves.
So we are home now and both getting some good rest. Glenn will have dialysis on Mondays, Wednesdays, and Fridays, to which I will be taking him. It takes about 4 hours for the whole procedure. Home health will come to the house everyday to change his dressing and observe his wound. I'm really hoping that it will heal within a couple days so he can get into the shower. You know how much better you feel after taking a shower when you've been sick. We don't know yet when PT will be coming. He has handled hemodialysis extremely well, considering he absolutely did not want to have to do it. In fact, he has handled everything thrown at him amazingly well. He lost 10 lbs through this whole experience; I really thought he had lost more because he looks like he lost about 20 lbs to me. He is extremely weak and tired, but he is able to get to the bathroom and kitchen without help. He is taking in more nutrition since he has been home, but not on solid food yet. So we are on the right road, just a slow one.

Change in plans

I will be taking Glenn home in the morning. He has not had a very good experience. I won't go into detail. Just know he didn't want me to leave him here alone tonight. I was going to take him home tonight but the supervisor said if we stay till the morning when the Dr. can officially discharge him she can give him prescriptions and set up home health. So I'm staying here with him tonight and we're leaving in the morning.

The big move

We made the big move this evening: Glenn is now in a rehab facility, (though not very happy about it.) He will have a pretty full schedule: therapy twice a day for 1 1/2 hrs each plus dialysis three times a week which takes about 4 hours plus transport both ways. We didn't get our first, second, third, or fourth choice of facilities, but the one he is in will take care of transporting him to and from the renal clinic. That is a load off of me since I would have had to do the transporting at other facilities. I am pretty tired so I will cut this short.

Onward and upward

Well, I think we are slowly making our way back up the hill. Today we started making plans for Glenn's discharge within the next day or two.  He is going to go to a (physical) rehab place since he is still very weak and he will make much faster progress with rehab than at home. (And he needs for me to not be around 24/7 to help him so he can learn what he can do for himself and what he really can live without. He and I both know that he is spoiled rotten). It looks like I will have to take him from rehab to dialysis three times a week, but hopefully he will only need to be in rehab for a week or two at the most. When he comes home he will still be going to dialysis three times a week for a few months but straight from home instead of making the trip to rehab then to the dialysis clinic. The plan is for him to be able to go back to peritoneal dialysis at home once the surgeon clears him for that.
Today we have also been working on getting his pain controlled with meds he can take by mouth.  We haven't conquered that yet but I think we will have it tomorrow.
You are great prayer warriors because we have seen God bring Glenn really close to the brink and back. He is seeing some healing in his life besides the physical. So you can know that God has been hearing you and answering you. Thank you.

Can we go back up the hill again?

 Glenn went to dialysis this morning and I took the opportunity to run home and take care of a few things. He got back to his room a little while after I got back. He was in a lot of pain and was nauseated. I don't know why he is having so much pain but the surgeon doesn't seem to be too concerned. He mentioned Glenn could go home in the next day or so but I'm not willing to take him home with the pain he is in. I have gotten him up walking in the room several times but he can't seem to make it any farther than the door. I'm trying tough love. I took his new edition of Flying Magazine up to the nurse's desk and told him it came in the mail but he has to go get it up at the desk. It hasn't worked so far. Physical therapy has walked him a couple times in the past week but they have been inconsistent. They came twice today but  missed him because he was in dialysis. It's a mystery to me how he had such a good day Sunday but has been going down hill since then. We need for this to be the bottom of the hill and to start back up to the top.
Thank you so much for all your love and prayers. I read every one of your comments and share them with Glenn.

Slow healing

I think I need to keep a log throughout the day because I have a hard time remembering by the night time what happened during the day. Glenn started the day not feeling as perky as he did yesterday. He thinks it's because he did too much yesterday when he had all his tubes pulled out and he felt much better. He did find the strength today to talk to a special visitor: our preacher.
Several people have asked if we have any idea when Glenn might get to go home. The answer is no we don't know. We are taking it one day at a time. I thought it might be in the first of the week but it looks like that is not the case. There needs to be more healing on the inside where the part of the colon was removed and the bleeding stops. Until then he will be getting more platelets to try to get the bleeding to stop altogether. He is still on clear liquid diet until there is better healing inside. When that happens he will be able to advance his diet to full liquid then regular diet to make sure everything is working as it should be. Trust me, when we find out when we are going home, you will all know it.

Night and Day

What a difference a day makes. This morning Glenn had a bunch of tubes pulled, including the NG tube. And in a little while his last line will be discontinued so he won't be hooked up to anything.  He got 2 more units of blood this afternoon with apparently no problem finding a match because it was ready soon after it was ordered. So far he hasn't had any allergic reaction. It is like night and day, he feels so much better. We don't know when he will be discharged but pretty sure we'll be staying here through tomorrow. After that it depends on how he tolerates food and if his blood can get to an acceptable level to release him. So I'll close on that happy note. :-)

End of the third week

I never did like roller coaster rides much. With this one, I just want to see the end of the ride and to know what to expect. But we don't get that luxury, do we. When I got up this morning I wasn't very optimistic about how the day would end. Glenn was taken to dialysis bright and early, with his platelets extremely low, (28), red blood count also very low (7.6), a little blood in his NG tube. Since his platelet count was low and he was going to have his blood line accessed, I didn't know if they would ever be able to stop his bleeding at the end of dialysis. And since it took 2 days to get a match for his last 2 blood transfusions, well.... that's what was on my mind when he left for dialysis. But he made it through dialysis fine. The "hiccups" returned with a vengeance and it is always very scary when he can't get his breath when he has several in a row. Eventually the nurse was able to get medication for it. He vomited not long after he had that medication, but it apparently got enough into his system to ease the hiccups so that they weren't so strong and he was able to get some rest. He got a unit of platelets this afternoon as well.
Since he had success last night with his passing what he needed to pass, (I'm trying to be discreet and as tasteful as possible here), the Dr. wanted to start weaning him off of the NG tube, ie disconnect it from the suction for as long as he can tolerate it without having any nausea or vomiting. That wasn't very successful earlier in the afternoon, but the past several hours have been better. If he can tolerate it without nausea the NG tube will be removed tomorrow. That's your next prayer assignment.
I was thinking back today and this hospitalization has now been longer than when he had his stem cell transplant in 2011. We've been here in the hospital for 3 weeks today.  He has probably lost nearly as much strength as he did then, as well. Maybe this week will bring much progress and we can get out of here before July 1.

A quiet day

Today was fairly quiet. Glenn didn't go to dialysis like he was supposed to. His schedule was changed since he had it yesterday, (Thursday) instead of Wednesday as he was originally scheduled. So he will go tomorrow for it. And your prayers were answered in a very slight way. So continue praying for his belly to start waking up.  His "hiccups" were treated and have stopped, (knock on wood). And this morning one of his Dr.s addressed Glenn's rash and that seems to be easing up. No one can really say for sure what caused it, but it was definitely an allergic reaction to something. The naso-gastric tube that is pumping his stomach is still in place. So over all, I am guardedly saying that he has started, ever so slightly, in the right direction. He is very weak and has lost a lot of weight, but I don't know exactly how much. When he gets discharged home he will have a lot of catching up to do to get back to the level of activity that he came in here with.

Same old same old

There has been no progress today in Glenn's recovery. And for the past few days he has had a rash that is slowly spreading over his whole body. No one seems to know what it is caused from and he is itching like crazy, as you can imagine. He does get some relief with some medicines. The "hiccups" continue intermittent with no explanation as well. It isn't really hiccups but more like a spasm of his diaphragm. Today he has had some episodes where  he has several hiccups in a row and he can't get his breath for several seconds and it is very frightening for him. At this moment he has fallen asleep with no hiccups and the itching has subsided, thanks to drugs. I just keep thinking that some day this will be only a memory and a story to tell.
The one thing that is holding up his progress is that the bowels are still asleep. Who knew we would ever be praying to pass gas! But that is your prayer assignment now, and I will definitely let you know when your prayers have been answered.

Busy Day

It has been a very busy day here. Early this morning Glenn went for the CT scan of his abdomen to try to see why nothing has moved in his intestines. The result is that he has either a blockage or the intestine has not woken up yet from surgery. As the morning went on, Glenn's abdomen became more and more distended and firm and it was making him short of breath. So he now has an NG tube, (one of those tubes in his nose down to his stomach) to drain out whatever is in there, and there was a lot there.  With his stomach pumped out the pressure was relieved. He has to keep the tube in for a couple days and hopefully his belly will wake up and start moving things along. One good thing to report is that the pain has greatly relieved since last night and he hasn't needed to use his pain pump hardly.  He was supposed to go for dialysis today but the Dr.s decided to wait until tomorrow for that.
Anne-Marie, our daughter is on her way down from N. Carolina to help in any way she can. Glenn isn't talking because of the tube down his throat. I have both of our phones on vibrate to try to keep things  quiet for him. He can't talk anyway. I am holding off visitors for the same reasons. I can't answer my phone much of the time because I am usually rubbing his feet and legs because it is comforting to him, but you can leave a message.  I am using this as my mode of communication with you all and I will try to give daily updates. Thank you for your patience with me in this as well as for your prayers and concerns. You are all wonderful!

Still hurting

Glenn hasn't made any progress today. He is still in a lot of pain and still no gas moving. The surgeon has ordered a CT scan of Glenn's abdomen for tomorrow. I'll let you know if it shows anything or nothing.
I contacted Glenn's nephrologist last night about how I was feeling. He couldn't personally take care of it but he did pass on the info. I also talked to the hospitalist about it. He assured me that the Dr.s are communicating with each other. I noticed the doctors, as they each came in on their rounds, were very compassionate and sympathetic with Glenn. They tried to reassure him that sometimes this recovery takes longer. Between that and the surgeon ordering the scan, I have since felt better about their care.

I've got nothing

 Glenn went to dialysis this morning. He has been pretty lethargic and weak. He hasn't had anything to eat other than a few clear liquids since his surgery last Tuesday, and he hasn't taken much of that. So he's too weak to walk except to get up in the chair a couple times a day. I'm thinking there needs to be pow-wow between me and all 5 of his Dr.s  taking care of him. Something needs to happen to get this man on the road to recovery because he's slowly fading away. So there's you prayer assignment for today.
Our daughter is coming down from Raleigh again on Friday to help out. Our son who lives here in town is checking on us daily now and helping wherever he can. This is probably the only communication I'll make with all of you for now so stay tuned to this station for any new up dates.

Finally a match

Finally Glenn got 2 units of blood today. It took 2 days for them to find a match because he has either a lot of or a rare antigen, (I don't know which) that was difficult to match. He still has a fair amount of pain from the surgery. We haven't been able to walk him in the hall because his blood count is so low that he could pass out if he got up to walk. He has been up sitting in the chair and standing for a few minutes at a time. He has the hiccups for hours at a time. The surgeon said it could be because of the diaphragm having been irritated in surgery. We don't really know what is causing it.
My kids are concerned that I am going to "hit a wall" at any time. I imagine some of you may be thinking the same thing. But I'm really not at that point yet and I plan to stay here while he is here. Our daughter might come down and stay with her dad to get me out of here for a while.
I know we will be here tomorrow (Monday) at least and most likely Tuesday. From there I don't know.
That's all for now.