Tuesday, June 30, 2015

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.

Sunday, June 28, 2015

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.

Friday, June 26, 2015

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.

Thursday, June 25, 2015

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.

Wednesday, June 24, 2015

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.

Tuesday, June 23, 2015

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.

Monday, June 22, 2015

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.

Sunday, June 21, 2015

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. :-)

Saturday, June 20, 2015

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.

Friday, June 19, 2015

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.

Thursday, June 18, 2015

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.

Wednesday, June 17, 2015

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!

Tuesday, June 16, 2015

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.

Monday, June 15, 2015

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.

Sunday, June 14, 2015

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.

Friday, June 12, 2015

Kind of at a stand still

Today Glenn had a pretty busy day. He had 4 different departments come to get him or do something with him all at noon: physical therapy, dialysis, respiratory therapy, x-ray.  X-ray and dialysis won out. He had a chest x-ray and then went to dialysis. I took the opportunity to run home and to do a couple things. He is making some progress but also seems to not be moving forward in other things. His blood count is staying low. He was supposed to get blood and platelets while he was in dialysis but there was a mix up and he  never got it. He'll probably get it tonight during the night. His blood count is low enough that he shouldn't get up and walk in the hall because he could easily pass out, but he really needs to for his recovery to go quicker. I have been getting him up just to stand and to sit in the chair.  But we have to time it for when he isn't having something done or isn't worn out. Kind of a catch 22 situation.  I shudder think of how he would be doing if I wasn't here. That's not bragging, it's just true. I  guess I'm saying all that to say I'm concerned that he isn't farther along in his recovery and is regressing a little in some ways. He's a little mentally slipping, although he is aware of that himself. I am trying to be his advocate without being a pain. Things need to turn around in order for him to get out of here. So that's where we are right now.

Thursday, June 11, 2015

Post op day 2

Yesterday was pretty rough for Glenn. His pain wasn't controlled and he was nauseated most of the day.  He also had hemodialysis yesterday, and surprisingly that wasn't too bad. He had a good nurse to stick him with the railroad spikes.  Today has been a little better; the pain and nausea are controlled now and he is moving a little better, but his blood count is pretty low so he's not walking around yet. He got blood and platelets today and will get more tomorrow, as well as hemodialysis again. He will have hemodialysis 3 times a week for the next few months, and hopefully he can go back to peritoneal dialysis after his belly heals.
Many people have asked how I'm doing. God gives strength that we don't have in ourselves in difficult situations. I know most of you would say "Amen" to that from your own experiences with Him.  Emotionally and physically I've had good days and not as good days. But I've always felt held up by God because of your prayers and notes of concern. So please know that if you are wishing you could do something for us, you are.

Tuesday, June 9, 2015

Surgery Day

Glenn had his surgery today and just got back to his room a little while ago. He's hurting a lot, of course. The Dr. said everything went well. He said he took out about a foot of the colon. I requested that since he was taking some out for it to be sent to pathology to test for the Light Chain Deposition
Disease that affected his kidneys. I think tomorrow he will have hemodialysis. Last night there was a problem with  one of the needles going where it doesn't belong. Hopefully it will work tomorrow. Got to go and take care of him and let the neighbors know about everything.

Monday, June 8, 2015

THE Plan

We have a plan now. Glenn will have surgery tomorrow, (Tuesday), at around 2:30 to remove a section of his colon. Today he is waiting to go to hemodialysis for a couple hours to make sure his fistula works because he will be having hemo instead of peritoneal dialysis for a few months to let the surgery area heal. I am so impressed with how he is dealing with all this. He has made all these decisions himself without any pressure from me or anyone else and with no hesitation or complaints. He has forged forward with it all. And he continues to be in high spirits, (with NO help from any drugs in case you were thinking that ;-)  ). He probably would like visitors tomorrow before he goes to surgery, and then give him a break for a day or so. But he does appreciate visits.

Friday, June 5, 2015

A Tentative Plan

Glenn has had another day of no bleeding, so it looks like it has stopped for now. The consensus of the Dr.s is that since this is the second time he has had a major GI bleed in that area he has a high chance of bleeding again so it needs to be taken out. If his blood was healthy and would clot normally surgery probably wouldn't be as necessary. But since he keeps low platelets it needs to happen sooner rather than later.  So tentatively that will happen next week. We don't have a scheduled date yet. After the surgery he will have to be on hemodialysis for a few months instead of the peritoneal dialysis at home that he has been doing. I think that is the part he dreads the most,( can you say railroad spike- sized needles?), but he seems to be settled with that. Since he is doing better he would love to have visitors. He will probably stay in the hospital for the weekend so he can get all the preparations done as soon as possible. But call me first to be sure we are still here, or you can check with the patient information to see if he is still a patient. And we are so very grateful for everyone's concerns and prayers. If you call me and I don't answer please leave a message and I will get back to you asap.

Thursday, June 4, 2015

A new day, hopefully

Glenn had a better day today. He has had little bleeding and got some good rest last night. I'm. cutting tthis short because I'm. having trouble getting this posted.

Wednesday, June 3, 2015

Keep praying please

Glenn had major GI bleeding all night last night. The Dr. took a look today to find out why. One of the two spots that were found Monday is the culprit. Glenn's platelet count runs very low and that is the part of the blood that facilitates clotting. So he has gotten more infusions of that to see if that will stop the bleeding. So we wait and see. He has been resting for a couple hours since he got back from testing so i have silenced our phones. I will keep you all updated as things happen.

Tuesday, June 2, 2015

Post-testing update

Thank you so much to all of you who have sent up prayers, sent us love and concern. We are strengthened by all. Glenn had some tests yesterday to try to locate the source of the bleeding and there were two spots that were found that had to be clamped. We just have to wait and see if it has stopped. He received two units of blood the first day and will receive more today. He is getting IV antibiotics for a few days to try to reduce inflammation in the GI tract. He will be talking to a surgeon today, but we don't anticipate having to have surgery at this point. Right now he is waiting for me to finish this so we can go walk the halls a little bit.  TBC......