Monday, July 28, 2008

When I stand before God...

I have often wondered about how my judgement will go down when it is my turn to stand before God. I know my salvation is assured but what about other areas of my life? Will I be able to hold my head up and know beyond a shadow of a doubt that I did all that I could do for others? Will I honestly be able to say that I treated others with the same respect that I would like directed towards me? Will I be commended for showing kindness or will I be shown where I have fallen short? In all honesty, I expect I'll see more of where I fell short than where I showed kindness.

I also wonder if I'll finally have the questions I've had answered. I imagine that I'll "know" everything I've been searching for the meanings to in an instant. Knowledge, joy, sadness, and shame will probably flash through my mind in the twinkling of an eye. I hope that I have more knowledge and joy than sadness and shame. All I can continue to do in this life is work towards that goal.

There have been many times I've wondered if my life has made any kind of impact on anyone else. Would I have been missed if I hadn't been here and been "me" in the sense of who I am now? Would the people I've come into contact with throughout the years miss the influence that I've had on theirs lives? Would they even recognize if I've had any influence on their lives? Have I even had any positive influence in their lives? Maybe, maybe not? What about negative impact? Sadly, this may also be something that I will have to answer for. I pray that the positives will greatly outweigh the negatives.

I'm not morbid and I'm not in a depressed state of mind, but I sometimes can't help but wonder if the world would have been better off if I had not existed. I nearly died as an infant from a very high temperature. How would the world have been different if I had? At times, there is almost a version of "It's a Wonderful Life" that flashes through my head. Of course, I don't even begin to think that any of the lives I've touched would have had the same type of impact on the world if I had not been here, but I still find myself wondering about it. What if I had made different choices with my life?

I often think I have let God down, and therefore let myself down, in many areas. I don't want to be the person who hid the "talents" that God gave me and didn't put them to the best use that I could have. I'm sure that I have done this. Things that I wanted to do, and either let others talk me out of or chickened out of, include: going away to college my freshman year, moving to Arizona to go to the university my sophomore year, traveling to Europe with my great-aunt as her companion, and joining the military. Each of those decisions were the direct result of (mostly negative) influence from someone else - and in turn, caused other decisions that were totally opposite of these. What if I had stood my ground in any of these choices and had the courage to face the challenge each presented? What kind of person would I have become instead of the person I am today? Would it have been an improvement or made me less of who I am? Of course, it's impossible to tell but I believe that when I stand before God that I will find the answers.

But, will I like them?

Home and doing well - except for that darn foot!

The pacemaker seems to be something that Ron's body needed. He's had more energy, better color, and a better appetite since coming home. Yesterday he said he was hungry all day and grazed in the kitchen. LOL - he's gained about eight pounds since last Thursday (and it's only Monday) and he is sure it's not from fluid retention. I told him that his grazing days are over and he had to be on more of a schedule for meals and snacks - not an all day gorge-a-thon.

We went back to see Dr. Heady today and he was disappointed in the foot. There was a dead patch where new skin had been just two short weeks ago. Very disappointing for us all to see that we've gone backwards instead of ahead. The good news is the deep tunnel seems to have closed in so we're hoping that this new problem is more surface than anything. He did tell Ron that he may be headed back to the OR for more debridement if what he did in the office today doesn't help.

He did so much cutting on the foot today in the office (with no anesthesia - thank goodness Ron doesn't have any feeling in his foot) that he had to cauterize more than one place that would not quit bleeding. He bled profusely all over the place - the pad, the floor, through two different pressure bandages - before Dr. Heady decided he needed to cauterize it. Took two tries to get it all taken care of.

Wednesday we'll see Dr. Peterie. That will be the first time since he OK'd Ron having Vancomycin. We're going to have a conversation regarding that decision...

We ended up purchasing a new scooter for Ron today. It's quite a bit heavier and holds up to 300 pounds (instead of the 250 his current one holds). Ron's weight fluctuates a lot so the 250 weight limit was not good enough. Right now he's at 264. This scooter was $1990 (and they marked it down from $2225 because I was going to purchase online). It was less expensive online but local repair if it breaks down is worth the extra instead of having to send it off for repair. His other scooter and this one are both made by Pride. The first one has held up very well so hopefully this one will also. We're going to sell the first one to Ron's daughter for $500. That's a very good deal for her as the new ones of this model are $2100. We paid $1100 for it in 2006, so we're doing OK on it.

Insurance won't pay any on this since they paid on the first one. It's only one per lifetime unless extenuating circumstances warrant an additional purchase, and that's usually only after several years and the first one is no longer repairable.

Friday, July 25, 2008

Ron is home

It has been a very long eight days but he’s home and, other than looking tired, he's actually looking better than he has in a long time. His kidney functions are back to 100%, he’s got good color in his face and legs, and his extremities are warm to the touch for the first time in months. He ended up with another heart “bleep” Wednesday night and it was good that he had the pacemaker. His nurse said that the monitor told the story of the 2nd degree AV block and the pacemaker then kicking it back into order.

It took all day for all of the doctors to parade through there. Every time we thought he was ready to go, they’d come back in and say another doctor wanted to check him out before he was discharged.

We did find out that we will be seeing the hematologist on an outpatient basis. Nothing major but he said Ron’s spleen is slightly enlarged and he wants to run some more blood tests on him. Not sure exactly what he’s looking for but I’m sure we’ll find out in due time. At least on August 1st our office co-pay goes down to $10 each visit.

Ron was able to sleep most of the night last night. I helped him up a couple of times and he's resting in his chair now. He says he's very tired and he knows the procedure took some energy out of him but I think that is just a normal side-effect of surgery so he should bounce back.

The home health nurse is on her way out to see him so I'll have her take a look at the incision and make sure that everything there is as it should be. I don't think he has a fever but she'll be able to let me know. His weight this morning was 254.6 and if it goes up two pounds in a day then we're to call the kidney doctor. I'm not sure what it was at the hospital but very close to that number. I will use our scales as the baseline to go from there.

Wednesday, July 23, 2008

Trying to give ME heart failure!

Well, they are still going to do the pacemaker but we had to have a bit of excitement first.

On Ron's wrist band it clearly says he's allergic to Vancomycin. On his chart it also clearly states that. When the PA for the cardiologist came in, she said the infectious disease doctor (Dr. Hartmann) had ok'd the pacemaker and ordered Vanco for him.

I said - hold on, he has an allergic reaction to Vanco and should not have it. His kidney doctor has said if he ever had it, it should be given very slowly and he should have Benadryl first. She said, well Dr. Hartmann said he could have it. I said Dr. Hartmann is not his primary infection doctor and he doesn't know Ron.

She left to go check with him again and when she came back she said he had ok'd it and to just give it slower. The nurse came in with 50 mg Benadryl that she injected first and then followed with the Vanco. They even slowed it down from 250 ml to 150 ml drip (not sure how that computes).

Less than five minutes later he said he was sick. I pushed the call light and got the nurse aid who was going to take his sugar (he'd had a low sugar a bit earlier). I said it was not his sugar, it was the IV. I left to go to the nurse's station and found only a student nurse there. I told her that he was sick and having a reaction to the IV drug.

By the time I got back to the room, the aid was calling his nurse. I walked in and he had collapsed back into the chair with his eyes open but fixated. His pupils were huge and he was totally unresponsive. I honestly thought he had died that quickly.

They called for a critical care team to his room and literally within seconds his room was filled with people from all over the hospital, including the cardiologist. They flushed and then pulled the IV line and started a new one.

Several of them told me he probably shouldn't have Vanco ever again. Duh... if they had listened to me in the first place he wouldn't have had it this time.

I don't ever need this kind of excitement again. EVER!!!

They are here to take him for the pacemaker now so I sure pray that things go more smoothly this time around.

Pacemaker today and home tomorrow

Ron's heart rate keeps dropping into the 30's when he sleeps so the cardiologist asked for some more telemetry readings. He told Ron yesterday that he was looking at a pacemaker in the near future. Today, he decided that doing it now as opposed to later was a good idea.

Ron wasn't too keen on the idea as he's worried about introducing infection into the incision. I got online and looked up a bunch of things for him and I think he is more calm now. His big thing is that he slept just fine last night and his heart rate must not have changed because the nurses didn't come in and say anything.

The problem he has is it's an intermittent dropping of his rate - maybe tonight, maybe next week, or maybe every day. If it drops while he's asleep, and I'm asleep, it could cause a problem. I asked the cardiologist if he could have a heart attack because it dropped and he said that it was entirely possible.

I told Ron that I didn't want him to go through all of this and then go home and have a heart episode. No way... So, he agreed to do it today. I did say it was totally his decision and I would support whatever he wanted to do.

He's feeling better and itching to get out, but...

I tell ya, once he gets back on the main track he is a bear wanting to get out and go home. I told him yesterday that he could lay in this bed just as easily as he could lay in the bed at home. I'm still waiting on him, but at least he's also being monitored so that's nice.

Dr. Francisco says that he needs a pacemaker but we're not worried about it. It's a fairly uncomplicated procedure and neither of us are concerned about it at all. He wants to do one today or tomorrow but Ron would rather wait until next week. I don't know... It's tough because when his heart rate drops he has no symptoms so I am concerned. Ron's concerned about the germs in the hospital, opening him up, and the possibility of re-introducing bacteria into his system.

It is a toss-up. I told him that it was totally up to him. I'll go along with whatever he decides to do. I may not like it and I may not agree but it is his body and his choice. He said that last night no one came in and said that his heart rate had dropped and he feels better. During his sleep is when the heart rate plummets and since it's not consistent, it's hard to tell if this is going to be an ongoing problem or not. I just don't know.

Dr. Francisco's partner (Dr. Amirani) is who does the procedure and he'll be the one to come in tomorrow and discharge Ron. Dr. Francisco will be out of town but will see Ron in his office next week - either way.

Ron is worried that I'll be upset with him if he doesn't have the pacemaker put in today. I said I absolutely would not and that it is totally his choice. I know that he is apprehensive - not about the procedure but about the possible side-effects, i.e., more infection, longer time in the hospital, complications, etc.

This is a tough decision and I'll post an update later.

Things to do while sitting in a hospital room...

1. Watch TV.
2. Drink bad coffee.
3. Surf the Internet.
4. Drink bad coffee.
5. Try to rest in a straight-back chair.
6. Play games on your laptop.
7. Drink more bad coffee.
8. Stare at the clock.
9. Watch HGTV.
10. Drink...yep...more bad coffee.

The past week has been a combination of the above - day in and day out. Thankfully, I got a recliner once Ron got transferred to a regular room. It's not great but a whole lot better than the straight chair I had before that.

When Ron was in the hospital in February, we signed up for "Senior Connection" which costs $25 annually. As a benefit of Senior Connection, he gets a private room upgrade at no additional cost (if a room is available), I get up to two snacks a day (the snacks could be 1/2 of a sandwich, some fruit, etc.), and then we have some other benefits that we could use. We've used the private room upgrade each time he's been in, which has saved us a lot of money. I think the difference between semi-private and private is around $50 per day. Multiply amount that times the number of days he's been in the hospital and it has really added up. Our insurance won't pay for a private room unless it's medically required that he have one (such as when he had MRSA).

Tuesday, July 22, 2008

Still hanging at the hospital

We thought Ron was going home today but it doesn't appear that this will be the case.

He had an oximetry test overnight to monitor his oxygen level and it's low enough that we're going to have to have oxygen for him at night when he sleeps. That's not a problem. No one smokes at our house so no biggie. Just have to figure out who the provider is going to be and get it ordered.

His heart rate dropped overnight and then he also had some down times during the day today. I know the nurse was in here twice today to check him because the telemetry monitor informed them that his heart rate was dangerously low. At one point I think it went to about 40, which causes a bit of concern. Dr. Francisco ordered an echo cardiogram this morning but we don't know the results of it yet. He told Ron to make an appointment for next week. I don't know if he's aware of the other episodes of the heart rate changing or not.

Dr. Truong was also in this afternoon. He doesn't believe that Ron needs any bone marrow testing and seems to think his anemia and platelet count is a direct result of the kidney disease. He did order a scan of his spleen to make sure it's not holding any infection there that we should be concerned about. He had some blood work drawn also. So far, no scan yet but the blood has been drawn.

The nephrologist was also in and said that things on his end were looking good. He doesn't expect that Ron will need to be here kidney-wise for any longer. He also told us that if Ron gains more than 2 pounds in one day to call his office. If so, then his kidneys are struggling again.

Physical therapy was here for an evaluation and watched him transfer from the bed to the chair. She brought him a band for exercising his arms.

We're still trying to get an over-the-bed trapeze set up for him but not sure if insurance will approve it or not. He's got a durable medical equipment cap per year of $1,000 and I have no idea how much those cost. If we don't get it then I don't think it's any big deal. We've managed without up until now, so we can continue to manage without it.

The only hangup now is Dr. Alvarado not being here yet and the spleen scan not being completed yet. At 6:40 pm, I don't expect that to happen so I'm confident that it will be tomorrow before Ron goes home. That's OK with me. I want to be sure that all the bases are covered before he's sent home.

The social workers who are coordinating his discharge and home health were a bit discouraged that Dr. Alvarado had not been here before they left for the day. Oh well... there is always tomorrow.

The central line and catheter were both pulled today and there haven't been any problems, which is a good thing.

Monday, July 21, 2008

The man is driving me nuts!

Every meal of every day he asks if he can have something that he's already been told he can't have - fried Catfish, sausage, soup, cheese, potato chips, etc. I told him that trying to get the same thing every day wasn’t going to change the answer – NO. He said he's hoping someone will mess up and let him have what he's asking for. I asked him if he wanted some poor tech to get into trouble because he wouldn't cooperate and he said he did not.

A diet that’s restricted in sodium, potassium, and that follows diabetic guidelines is really difficult to figure out. Some things he could have on one diet he cannot have on another. If he tries to get enough carbs into a meal, it usually goes over in sodium and potassium.

I told him I am sorry that it’s so restrictive but not following dietary rules in the first place (when he was first diagnosed with diabetes) is what brought him to to where he is now. Fighting the sodium and potassium restrictions aren't fun but it's something he has to do if he plans on having any quality of life.

I told him tonight he was making life very difficult for me by being so uncooperative. I left early and left Keith with him.

I am sleep deprived.

I am exhausted

I'm not quite sure why I'm exhausted, but I am. I think I slept fairly well last night. My sugar was up a bit this morning and it may still be up. I'm sitting in the recliner in Ron's room and trying very hard to keep my eyes open. I can't focus on the page in front of me so not sure if it's fatigue or high sugar stopping me from focusing. Or, it could be an optical migraine which has no pain but keeps me from being able to see clearly.

Ron is better today and because he's better, he's grouchy. He is fighting the catheter, fighting the IV, fighting the foot things that squeeze his calves to prevent blood clots, and anything else that he can think of to complain about. There's not much I can do to help him and I have to admit I've lost my patience with him a couple of times today. I just get comfortable and he wants me to get up and get something, fix something, or move something. Sure - I can do it; I've got nothing better to do.

The doctors are agreeable that he's able to probably go home tomorrow. I have no problem with that but I still want him to see OT/PT to assess how he does in transfers and to show them his weaknesses. His foot is not infected but since the hole is bigger I just don't know how he could be any "less" on it than he already is. Dr. Heady said maybe a rehab facility would be an option for him but I'm sure Ron would fight that.

I want to see about an overhead trapeze so he doesn't push down on the bed with his foot when trying to move up higher in the bed. This has always been a concern for me and I'm constantly moving his foot or moving the pillows he's supposed to have his foot propped up on.

I want a sleep study to see if he's getting enough oxygen because the nephrologist says he may not be getting enough oxygen so the carbon dioxide builds up and triggers the kidney failure.

Dr. Alvarado did order the sleep study so hopefully it will happen tonight. She also ordered the consult with the hematologist so I hope he will come in tonight or tomorrow. PT is supposed to come sometime today too but since it's already 4:00 I'm not sure that will happen. Personally, I don't care if he stays until Wednesday if that's what it takes. I want all the bases covered before he goes home so we don't have a repeat performance in six weeks. I'm getting tired of all of this.

I'd like to have some time to actually rest and recuperate during this time frame where I'm supposed to be on short term disability. I really wanted to have some time for me, which I know is very selfish of me but I think I do need it.

I'm glad that Amy is there but I don't want to ask her to do too much. She has her hands full with work/school/Isaiah. The combination of those is a full load. Thank God though that she lives with us. Not sure what I'd have done sometimes if I'd been living there alone with Ron. I know she wants her own place but there's nothing wrong with them staying with us as long as it's mutually beneficial and OK with both parties. I know that Ron loves having Isaiah there.

But, I digress...

I lost a bit more weight but gained back a pound. I'm still very happy with the weight loss up to this point so I can't complain. I'd like to lose about 10 more pounds in the six weeks that I'll be off work. No matter what I lose between now and then will be a blessing and rejoiced over. Ron says I'm having too good of a time putting on things and saying "oh, this is too big!" LOL! I have given away stacks of clothes and I have several things to put on Craigslist.

Ron is watching TV so maybe I'll lay my head down for just a little bit...

Poor little boy

Poor Isaiah! He gets into trouble so much lately that Amy is at her wits end on how to get through to him to behave. He says he's a "bad" boy and when we tell him he is not I'm not sure that he believes us. He's been in trouble quite a bit at daycare for various things, one of which is him wanting his own way.

We've run into this at home, too - for which he gets a time out or other appropriate consequence, and last night was a prime example.

It was bedtime; we were all tired and ready for bed. Amy got Isaiah's pajamas out and told him to come and she'd help him change. He's always wanting to do one more thing so he told her "just a minute." She let him know that she wasn't doing this on his time frame and if he wanted help with his pajamas he could just come into her room.

A 30-minute battle of wills ensued following this and I finally ended up intervening because I wanted to get to sleep. He was so loud and insistent that she HAD to go back into his room that I went downstairs.

When I got to the bottom of the stairs and very sternly said his name, he got quiet and hid behind his mom. It's not like I was going to do anything to him but he knew I was meaning business. I wanted him in bed. I did end up going into the bedroom and telling him that he needed to do what mommy said and quit arguing with him.

He ended up with me putting his shirt on and putting him in Amy's bed, after which I went back upstairs to my bed. He cried for a few minutes and then it was quiet. Amy came back upstairs, carrying him in her arms and saying, "I know why it matters now. I've figured it out."

I was confused as to what she meant but as soon as she explained it, it made perfect sense and makes me wonder if some of his other episodes are because of this very reason, too.

Isaiah was out of his pajamas and very sad. Amy told me that she didn't connect what he wanted to do until he told her, "You have to come back to my room so you're not mad." What he REALLY wanted - instead of having his own way - was to erase the episode completely by replaying it from the exact place and the exact time frame where his mom had gotten onto him. He could only see that she got upset with him in his room over the pajamas, so she had to go back to that place so he could "erase" the incident as if it didn't happen. He kept saying "and you won't be mad at me" "you have to be happy with me."

Poor thing - his little mind just can't wrap around the fact that we don't carry the anger with us and when he gets into trouble for doing something that we don't have to back up to right before he did it for him to make amends.

After realizing that, an earlier incident made perfect sense - and other incidents came crashing back to my memory that also made sense.

Earlier in the evening I had been sitting in a dining room chair and Isaiah was standing over my left shoulder. Amy and I had been talking and he wanted to talk but I told him to hush and it would be his turn in a minute.

LOL - he collapsed on the floor and I imitated him. He yelled; I yelled. This went on for several minutes before he realized that he needed to quit having a a tissy. I asked him if he was ready to tell me what he wanted and he said he was - but I had to get back in the same chair and he had to stand in the same position. It sounds like he just wants his own way, but it really makes sense that he can't see there's any other way to address the situation.

I wonder if his daycare teachers would understand this concept? Part of the problem is they've not been trained to deal with special-needs children so I highly doubt they'll believe he's doing anything other than trying to have his way, but I do realize there's a very fine line between the two and it's sometimes hard to tell the difference. I don't know how much of this is an "autism" characteristic but it is definitely something that Amy should discuss with the counselor she's been referred to.

Sunday, July 20, 2008

Some better news today

Dr. Moussa was in this morning and said that Ron's potassium and creatinine were back to normal so he's going to OK him to be moved to a regular room. The only problem I have with that is that he'll be on the same floor where he got such poor care the last time he was here. But, on the plus side, I will be off work and at the hospital so I can run interference if I need to. I just can't put him on and off of the bedside commode so I will make sure the nurses are aware that it is a two person job. His nurse in CCU said he's her only patient so she's not in any hurry to get him moved and she's trying to hold out for a private room for him. He doesn't do well in semi-private rooms.

He still has a catheter so there's no problem there. They just have to empty it several times a day. I think he's lost about 20 pounds again - or close to it - bringing him down to about 250. He was 269 when he checked in on Thursday. Hospital diet... hmmm, no thanks - I'll continue to lose weight the old-fashioned way.

Ron is much stronger today and talking better. He has his sense of humor intact so that's nice. His right hand is drawing up a bit but I think his potassium must be on the low side now. He can straighten it back out and it's mostly his little finger so it sounds more like low magnesium or potassium.

Ron's nurse came back in and said she has him a private room on a different floor. What a relief! She's still not in any hurry to move him but said sometime today she'll get him up there. The room is reserved for him so they won't put anyone else in it, so that's good.

Dr. Ward (in again for Dr. Alvarado) increased his insulin so maybe his sugars will stay down a bit better. He's had some fairly high fasting sugars, and those right after meals, so increasing the insulin should help quite a bit.

Ron's had quite a few visitors so that's been nice. Haven't seen our boys up here though. That's not so nice. It is, after all, the weekend.

Saturday, July 19, 2008

Talking today

Ron is actually able to carry on a conversation today. Not well, but he's talking. He still has some confusion and has trouble saying exactly what he's trying to say but it is getting better.

His potassium was down to 3.4 this morning, which is now a little bit below normal. His hemoglobin has gone up to 11.4, which is a bit low but better than the 9 and 10 he had been running. Not sure what his creatinine is now but I know that it's back within normal limits. The nephrologist was pleased with his blood work results and has stopped the Bumex and Insulin via IV. He's on a normal saline IV right now and that is all. That is a good thing.

Dr. Moussa also said that Ron cannot absolutely take Enalapril or Benicar any more. He was just started on the Benicar a couple of weeks ago and when his blood pressure went really low, I cut it back to once a day instead of twice a day. It dropped even farther so I called the cardiologist again and he stopped the Benicar and dropped the Enalapril down to once daily instead. Dr. Mousa says the Enalapril has got to go as he thinks it's the trigger for his kidney shut-down. He's in the hospital, they stop his meds and get him regulated, then he goes home and starts back on the meds and in six-eight weeks he's back in this shape.

Dr. Heady was in early this morning and said that he's afraid Ron's got another ulcer on the same heel. He thinks that while Ron was in his confused state he was not keeping his heel off of the bed and the floor. There was no evidence of an additional ulcer on Wednesday (I saw his foot) but yesterday when the wound care nurse changed the wound vac bandage, he said there was a very large blister that had popped on his foot. I saw the picture and it really looked like a big area was involved. This is very upsetting as the original wound was caused by a big blister and we've been since December 15th trying to get it to heal.

Dr. Heady will look at the foot on Monday when the wound vac dressing is changed (it's changed M-W-F).

Dr. Abbas, the neurologist, was in and very disappointed that Tall Grass had not sent over the CD with Ron's MRI on it. Now we have to wait until Monday because they're not open on the weekend.

Dr. Ward was in for Dr. Alvarado (who is off this weekend). She said that he was improving but he was in no shape to go home yet. Ron would like to go home but I told him that he had to be in a good enough condition that I could care for him. At this time, he is not and there is no way I could do it.

I'm afraid at this point that he's going to develop ulcers on his butt because he's so bony and having to sit/lie on his back so much. I don't know if he could be positioned on his side any or if that would be more uncomfortable for him. I know I don't want him moved from CCU until he's stable enough to help himself. The regular floor is so busy and short-handed that they can't often get in quickly to help him. He cannot help himself and I cannot be here every hour of the day and night.

He's very, very weak this time and sounds very weak when he talks. He wants to go home and, although not terribly depressed, he is concerned about what is going on and why he's not healing. He's worried about his foot, especially now that he might have another ulcer on it. He doesn't want to be sent to a rehab facility, which is not in the plans but he's still worried about it.

Prayers, as always, are greatly appreciated.

Thursday, July 17, 2008

Ron's in the hospital again

I had to call an ambulance this morning. Ron had an MRI yesterday at noon because of his continued confusion, lethargy, and coordination issues. The doctor’s office had called in two 10mg Valium tablets to take 30 minutes before the MRI. When I told the receptionist what I had, she was a bit surprised but we both figured the doctor’s office knew what they were doing. I even asked Ron if he thought he needed it because he was already sleepy and not very responsive prior to his appointment. He said yes so I gave it to him.

He didn’t really wake up much after we left, even when going to two other doctor appointments and having lunch in between. He fell asleep with his sandwich in his hands and spilled the contents all down his shirt and on the floor. Both of those doctors were quite surprised at how he was and how unresponsive he was to stimulus and conversation. In fact, I had to actually drive his scooter from the front, driving him backwards because he was not physically capable of doing it. He would either not go because he couldn’t find the lever or he would go too slowly – or even worse, drive right into things.

By the time I got him and Isaiah home it was nearly 6:00 PM. It took me until 6:30 to get him out of the car (I had to tell him several times that I was going to call an ambulance if he didn’t open his eyes long enough to help me get him moved; I said I was not able to pick him up and if he fell, it would be worse on both of us), onto the scooter, into the house (with me driving up the ramp), and into the bed. He didn’t move from that position all night. I took his sugar and it was 401 so I gave him a shot and called the doctor.

Our doctor was gone already but I talked to the nurse and she said 20 mg Valium was too much and he might be 4-5 more hours sleeping it off, but wanted me to call back in an hour to let her know what his sugar and blood pressure were. I did and asked if she thought I should call an ambulance then. She said she couldn’t advise me to or not to as that was totally my decision. Ugh – but I said OK.

I literally stayed up all night taking his blood pressure and his sugar every hour. Keith came over and stayed until about 10:00 pm and when I wasn’t doing it, he was. Amy came home from school because I told her I just didn’t think I could take care of Ron and Isaiah. Good thing she did. I did doze off between 1:30 and 3:00-ish because he jolted me awake with tremors – or more like violent shaking.

I watched him all night and then at 6:30 got up and got dressed, and fixed myself a bowl of cereal. I had decided I was going to the hospital and knew I needed something to eat beforehand. I had just checked on him and talked to him so I knew he wasn’t in any immediate danger.

It took me an hour to get him from the bed, to the scooter, to the toilet (and he was not able to go), back on the scooter, and then to the living room chair. I put an ice pack on his sore shoulder (he has bursitis) and called the paramedics.
They were here about 45 seconds and asked what hospital was my preference.

Once we got there, they did the usual routine of blood work, asking what medications he’s on, when did this start, etc. etc. etc. I had all the answers and when I got to the Valium part, they were very concerned. The doctor said that it was obvious that they could not let him leave like this so he would be staying at least overnight while he slept off the effects of the Valium.

That was just the beginning. His creatinine is 3.1 and his potassium is 7.2. Those are both indicators of kidney failure so to ICU he goes. Once Dr. Alvarado got the call that he was in the ER, she knew without them saying his whole name who it was. She came up to the hospital not long after he made it to the ICU room. We were in the ER for about five hours while we waited for a bed.

She said she received the results of the MRI and it showed that he’s got Normal Pressure Hydrocephalus (I did a little bit of research and came up with this website: - there is a lot on that site and some of it doesn't sound good but overall I'm getting that early diagnosis is good and has the best outcome after surgery). She wants to start with some nuclear studies (least invasive) before they just assume that’s the whole problem. His body is still twitching, his right hand won’t stay straight (it curls up), and he hasn’t really been responsive for over 30 hours.

Dr. Alvarado ordered consults with nephrology, neurology, neurosurgeon, his foot doctor, his cardiologist, and his infection doctor. Nephrology and neurosurgery came by this afternoon while I was still there. The nephrologist ordered medication to lower his potassium and creatinine, is stopping some meds, searching for any infection in his body, and going from there. The neurosurgeon’s physician assistant said they’d start with a nuclear medicine study to see what it showed and they want to start with the least invasive procedure and move forward. The concern is that the hydrocephalus is a secondary effect of some other cause and they don’t want to jump right in with surgery to put in a shunt and then find out that it’s something else entirely.

I told Dr. Alvarado that I didn’t want him to get sent home after they literally put a band-aid on it – I want him to stay there long enough to find out what’s wrong and treat it. This is the 5th hospitalization since February 18. Not only is it hard on him, it’s expensive for us and for insurance. I’ve got $100 deductible for each visit (I know that doesn’t sound like much but I’ve got $1,000 per month in our share of the wound vac). This stuff is adding up and the co-pays, deductibles, and travel time is taking its toll on us and our finances.

She agreed and said to plan on him being in there for maybe even a week. I’m good with that – as long as we get some answers.

Amy and the Cherries

Have you ever wondered how cherries, added to cherry limeades, get their holes? No? I hadn’t either. Amy, on the other hand, has often wondered how the holes were always in the same place, always the same size, and didn’t go all the way through.
So, we were enjoying limeades the other day – mine was cranberry and hers was cherry. As she got to the end of her drink she asked me to look at the cherry because it didn’t look right. She didn’t want to eat a spoiled cherry.
I took a look and said it was just fine; that’s how they always look and once the pit is removed they all look odd.

First she was silent and then she started laughing. I realized she was laughing at herself so I asked her how she thought the pits were removed from cherries. She said she had never thought about it since she doesn’t eat fresh cherries. She really thought that the straw made the hole.

I asked her if it didn’t seem odd the hole was always there, in the same place, every time she had cherry limeade. Well, yes she had wondered but had never really thought about it. So I asked her if she’d ever heard of a cherry pitter. Nope – never had. She didn’t ever stop to think that cherries had pits.

Well, now she knows.

Silly girl.

Ron’s Newest Challenge

Ron has been having several instances of forgetfulness over the past couple of weeks and complaining of a “fuzzy” head – not quite dizzy but not normal either. On Friday, July 4th, it took three of us to get him into bed and Saturday he did not remember any of it. His blood pressure on Friday night was very low. I stayed awake and took it every 15 minutes until it started coming back up. On Saturday night, I found him on his knees by the bed. Although he said he had not fallen it took four of us to get him into bed. We went to my family reunion in KC on the 6th and several people asked if he was OK. My mom, observing him sleeping, told my niece that she sure hoped that sleeping was all that he was doing.

Monday, the 7th, I took him to see Dr. Heady and he appeared to be acting normally. His blood pressure seemed to be normal and he stayed awake for most of the visit and drive time. We got home about 11:00 am and he had to be at another doctor’s office at 1:40 to have his blood work done. He fell asleep in his chair and I had difficulty waking him. In fact, by the time he was awake, I was taking his blood pressure, Jenny was taking his pulse, and Amy was taking his sugar. He didn’t understand what all the fuss was about because he was “fine” and said he was just sleeping.

Several times during the weekend he appeared to be having difficulty staying upright in his scooter and had difficulty holding eating utensils. Every time I’d ask him if he was OK he got irritated with me. Jenny was concerned about him too and wanted him to go to the ER. He was afraid they’d keep him if he went and then I’d miss the family reunion.

On Wednesday, the 9th, I told the infectious disease nurses about what had been going on and they were quite concerned. I did stop one of his medications (Benicar) on the doctor’s advice and Ron’s blood pressure did come up a bit but the fuzziness in his head has stayed.

Friday night, the 11th, he had praise team practice at the church and I was also working there to help set up for a Saturday garage sale. On our way home, he said “Tomorrow morning we’ll take Maisey to the groomer and then go get a sandwich. What do you want to do after that?” I said I’d be working all day at the sale and did he want to stay at the church all day. He said no, that he thought he’d just stay home.

Saturday morning I discussed with him the plan for the day – take Maisey to the groomer’s, work at the sale, and could he watch Isaiah at noon so Amy could get her nails fixed. We probably spent 15-20 minutes talking before I loaded Maisey into her carrier and I left.

About an hour later, I got a call from Ron.

Ron: where are you?
Me: at the church.
Ron: you didn’t come back after me.
Me: huh? You said you didn’t want to sit up here all day.
Ron: when did I say that?
Me: last night as we were leaving.
Ron: where were we last night?
Me: the church. You had practice and I helped set up for sale. Oh, Marie is in the hospital.
Ron: who is Marie?
Me: the groomer…
Ron: did you go down there? Where’s Maisey? Oh, did you take her?
Me: no, Ron, I just went down there for the fun of it. Of course I took her.
Me: (finally realizing he was confused) are you waiting for me to come take you to church? Are you ready for church?
Ron: yes
Me: it’s Saturday.
Ron: oh. Guess I’ll go back to bed.

Naturally I was concerned so I called Amy and told her that she might want to take Isaiah with her. When she was getting ready to leave Ron asked her what time her nail appointment was. That is the only thing he remembered from our discussion.

On Monday, the 14th, I had Isaiah as Amy had to leave before 6:00 am to enroll him in latchkey. I went into the bedroom and the TV was on but not the cable box. I told him that it was hard on the TV to leave it on like that and he said he'd been watching it until he heard me leave. I said I'd not gone anywhere but Amy had left to go enroll Isaiah. Oh... Fifteen minutes later, Ron asked why I had Isaiah and I told him. As we were getting ready to leave (about 30 min later) he asked me if Amy was up. I said she was still gone.

I decided he needed to see the doctor so I made an appointment for that day. She gave him a cognitive memory test and he only got 17 right out of 30. Dr. Alvarado said that he should have scored higher and wanted him to have an MRI of his brain to see what was going on. At the very least she thought he was having some vascular changes.

The MRI was scheduled for Wednesday, 7/16.

Saturday, July 5, 2008

It has been a while...

So much has happened since I last posted. Ron saw Dr. Peterie this past Wednesday and he says the hole is not getting any shallower. Of course, we were disappointed but we kind of expected that. Ron was supposed to have a heart cath on the 9th but the doctor says it's really not a good time for him to subject his body to the procedure.

Dr. Wolfe's office called on Thursday and said they were referring Ron to a hematologist as his blood count was still dangerously low and not coming up fast enough. We both know there are a lot of things that can cause the low blood count and none of them are great. The main culprit could be the metronidazole he's taking for infection and if so, then it's an easy fix. If not, it could be any number of other things. We're just praying that it's nothing more severe than the medication.

Ron has not been feeling very well the past couple of days. My family reunion in Kansas City is tomorrow and he's been so "weird" acting that I'm wondering if I'm going to be able to make it after all. Last night it took three of us to get him into bed and today he's not been out of it for very long. He had no memory of us getting him into bed. His sugar was 333 last night and his blood pressure was 112/70. It ended up going as low as 91/51 before it started coming back up. I gave him 55 units of Lantus but this morning his sugar was still 307 so I gave him 55 more units. He's not had much to eat today either. I just rechecked his sugar and it was 376, so I gave him 60 units of Humalog.

He's also running a low-grade fever and had a sore throat, so we wonder about those two things. He has spent most of yesterday evening and today either in bed or in his recliner - asleep. He's fallen asleep in mid-conversation, while he was eating, and while he was getting to the toilet. I was afraid he was going to fall off of it because he was asleep. He's not moving very well but he does not want to go back to the hospital. He says he's actually looking forward to the reunion. We'll see...

On another note, it's been nice having Shaun, Jenny, and Alexander here for a visit. Alexander is sure a cutie-pie. He looks more like his mom than he does Shaun but maybe as he gets older he'll start looking more like our side of the family. LOL, maybe. We bought him a few little outfits and some toys. He is having fun with the toys but he likes my computer power switch and the stove knobs so much better. He loves to crawl after the dog, too.

They leave to go back home on Tuesday morning and it will be back to just us again. Isaiah has enjoyed having him here but he's had a bit of jealousy, too. When he walked in on Wednesday evening and saw them here, he wanted Alexander to come and play with him. He'd go into a room and call "come on Alexander" and expect him to just join him. LOL!

Amy and Shaun bought some fireworks to shoot. Isaiah has always been afraid of them so we've not bought any in the past. This year he was really excited about a lot of them and he was fine until so many started going off all around us last night. They were too loud and he couldn't take the noise. We had a great time with them though and I think I got some good pictures.

I think that is most of the updates. Right now Ron is sleeping (again), Amy and Jenny are gone with the kids to a birtday party, Shaun is on the computer playing a game, and I'm between housework chores. Oh joy... I better get back to them. I have pasta salad to make for tomorrow. We're taking brownies, the pasta salad, fried rice, and some chips.