Blessings

Mike wasn't great today. He slept most of the day, but that could be for a number of reasons. He's on an antiobiotic for an "infection", which they don't know where it originated from. They keep saying he has "possible aspiration pneumonia", but the suspicious spot is in the lower left lung - the same area they have questionsed EVERYTIME he has been in the hospital. He DOES have a cough I don't like, but when they check his lungs, they say it sounds clear. One culture came back to show some kind of infection in his urine, but it will be another day or two for the culture to be verified. He had a hard time eating/drinking today, but I think he's a bit dehydrated. His urine is dark, which is always an indication. I have been afraid of dehydration since he was admitted, but no one would listen to me. He had gone a few days without anything to eat or drink WITHOUT being on an IV. I'm confident that once he is hydrated, he will get stronger and do OK with drinking and therefor gaining more energy.

As Brandon and I were leaving to get Courtney from a school trip, we met up with the pastor of our church (he had been there at the request of another parishoner to say prayers for a relative). Divine intervention - I think so. He offered to come into Mike's room and say a prayer. He did a beautiful job and it brought my mom and me to tears. Even he said that it was "meant to be" that we saw him when we did. This was a gift from God and something we all needed.

Tomorrow will be a CRAZY day. Courtney is being commissioned by Bishop Murphy to begin her 3 year term as a member of his diocesan counsel. They are having a special mass, then the members have a special luncheon and their first meeting. She also has to make up a driver's ed class in the morning before mass. My brother and Walter will be spending the morning with Mike so that we can attend Courtney's special ceremony. Afterward I will go straight to the hospital. This weekend has been EXTREMELY busy and I haven't even thought about grocery shopping. I have no idea when I am going to do that. There really is NO REST FOR THE WEARY.

Major Setback

Yesterday was NOT a good day.

I got to the hospital around 3:30. Nathan indicated that Mike had a good day. He ate all his breakfast and lunch and was awake most of the day. Around 4pm, he started coughing/burping. He was doing the same thing he did at home and the doctors finally saw what I had been talking about. This "episode" lasted until about 9pm. During this time the doctor told me that they had diagnosed Mike with GERD. He explained that the coughing and discomfort was from this. Not long after this, Mike started having problems breathing from coughing for so long and so hard. His vitals shot up and he had a fever. The nurses got the doctor and they ordered a chest x-ray and blood tests. The IV team tried again to find veins. After 4 unsuccessful attempts in his arms, they finally found a vein on his foot. He didn't even flinch when they put it in. His fever was now 101.7.

At 10:20pm, they finally got the tylenol suppository from pharmacy and they gave it to him. His x-ray showed "some congestion in his mid right lung". Not good.

I spoke with his regular doctor at 7am this morning and he explained that Mike may have aspirated from the GERD. When he last saw Mike yesterday, he had been doing so well, he wanted to send him home today. He was SHOCKED when he heard what happened last night. This morning he said that Mike was resting comfortably and breathing fine. Had he not been told about last night, he wouldn't have known anything was wrong.

My main concern now is this GERD. If this happens each time that Mike eats, the chances of him aspirating the reflux are high. Today they are not giving him any food, after all his body went through last night. He is now on antibiotics and they are testing his blood and urine. I requested that his catheter be removed. His brother passed away from becomming septic after his catheter became clogged. I am covering all basis and if he doesn't need it in, why add another concern.

As always, please pray for Mike's recovery and our strength in getting through this setback.

Thank You

I would first like to thank all of you that sent well wishes and prayers for Mike. I've been so busy running back and forth AND going to work, my time has been so limited. I have a few minutes now before work so I thought I would update, but it would be hard to write everyone back.

I believe they will be doing an endoscopy today to try to determine the cause of Mike's stomach upset. He seems to do well until his stomach gets full, and then the gas and discomfrt starts.

Mike's weekend aid came up to see him last night. She brought flowers and took over. She was very upset when she saw the way Mike's bed was made and took it upon herself to re-do it correctly so that Mike would be more comfortable. We've been so blessed with the people we have caring for Mike. There is no doubt in my mind that they are part of the reason he is doing so well.

Time to "Relax"

Today I decided to take the "day off". Courtney and I were at the hospital Sat and Sun from 9-9. I ALWAYS tell Courtney she should stay home and do other things, but she refuses, so I've given up the fight. After two back-to-back 12 hour days, I decided to ask Nathan to spend the day with Mike so that I could unwind and spend some time with Courtney and Brandon. In my heart, I KNOW that Mike would agree with my decision.

Yesterday the GI doctor came in and saw Mike eat for himself. Previously, the resident had ordered a swallow test, but the GI doctor cancelled it based on what I had told him. Yesterday he was able to see for himself that Mike takes the food, "chews" it and then swallows without incident. It's always after the fact that Mike gets gassy and then it becomes a problem. He indicated that they will most likely do an endoscopy, this way they can see for sure what, if anything, is going on down there. We love this doctor, he "gets it".

While it is ALWAYS heartbreaking to leave Mike at night, it has gotten a little easier. I guess this is what happens after the 6th hospital stay in a few years. Once I get to meet the nurses and they know our situation, for the most part, they seem to be very understanding and caring. This hospital stay, they also arranged for Mike to have a "one to one" from 9pm-9am when we're not there. That ALONE makes me rest easy. The fact that he has someone with him at ALL TIMES is comforting.

I look forward to "relaxing" today with the kids. We're going to the movies and then we're going to BBQ. I'm also going to plant some flowers I got about 2 weeks ago. After all is finished, we will go the hospital and see Mike.

Happy Memorial Day and God Bless Our Troops.

Four Days in Hospital

Mike seems to be doing OK, although I'm concerned. The doctor reduced Mike's medicine that he needs for his seizures, which was the exact reason he's in the hospital in the first place. I'm not quite sure what that's all about.

It's the same nonsense though. When Mike is at home, he's usually in bed by 8pm. At the hospital, he doesn't get his last medication until 9pm and it's REALLY difficult to get it down. His body is so tired by then. Each time in the hospital, I address this issue with his doctor and try to change the time he gets it, but apparantly the time patients get their medicine is written in stone and cannot be changed. And God forbid you need anything around 7pm when the shift changes. Anywhere from 6:30 to 8:30 is useless. Mike is supposed to have a "one to one" from 9pm-9am. Tonight we left around 9:10 and the person wasn't there yet. Mike's room is all the way in the back of the floor away from everyone. He can't speak for himself. It's so difficult to leave him not knowing if and when the PCA will show up.

As usual, I get so frustrated by the OBVIOUS mistakes and carelessness of the staff at the hospital. The sad part is that the hospital he's in is one of the better hospitals in our area. Can you imagine being in a bad hospital????

Update

You would think after all the hospitalizations Mike has endured, I would be used to the nonsense that goes on in the hospital with procedures and staff, but I'm not. I won't bore anyone with specifics. I was able to track down the resident yesterday and he agreed to let Mike start to eat. They had held off giving him food because they thought he was still "post-dictal". This happens after an "S" when the pateint becomes disoriented and VERY tired. I advised the resident that Mike may appear even more lethargic because he has NOT eaten.

The GI specialists will hopefully be in today to address the stomach issues Mike has been dealing with the last few weeks. I wonder if this could be playing a part.

Mike in Hospital...again

This morning I had to take Mike to the ER. He had 2 grand mal seizures within a few hours of each other. His neurologist wanted to check his medicine levels to make sure they were at therapeutic levels. Since he's also had some stomach issues, we thought we would check them out, since physical issues can often cause distress which can lead to "S's". I got to the hospital at 10:30 am and came home at 11:15 pm. It's been a long and exhausting day. I pray that tomorrow will be better.

Another "S"

Mike's friend Tom came to visit again yesterday (he also came the day before). His son is taking up boxing right down the block from us, so he comes and visits, while his son is boxing. Anyway, we got off late in giving Mike his dinner and I only started giving him his medication around 6:30 (he always gets it at 5:30). Around 6pm, he started getting big "myoclonic jerks". They continued on and off until we got him to bed. Around 11pm he started again and they continued for about 1/2 hour. It was a little before 4am when they started again, but this time they culminated with a full blown "S". Needless to say, I didn't get much sleep. I anticipated this happening and was on edge all night. After it happened, I was finally able to go back to sleep until it was time for me to get up around 7am. If you've read my posts before, now will begin the "walking on eggshell" period when I will wait to see if that was it, or if they will continue.

I'm not sure if this has anything to do with what's been going on with Mike the last 2 weeks. His neurologist said that they can often be brought on by being physically sick. I just don't know. It's so hard to guess as to what's going on inside Mike and I hate to say that I'm just SO tired. I don't want to give up and I won't. This too shall pass.............

A Better Day

Yesterday I spoke with Mike's doctor. He suggested I increase Mike's Prilosec to twice a day and give him Mylanta. It may be too soon to say, but after a day and a half, Mike seems to be better. Today he did MUCH better. He ate without any incidents and didn't burp as much. I guess we will have to wait and see. If it continues to help, I will have to look into what excatly happened to cause such stomach upset. I hope and pray that he continues with the good days, rather than the bad.

Rough Night

For the last few months, Mike has been having this "gas" problem. After he takes a few bites, he becomes gassy and burps. If he has eaten slowly, it's OK, but if he is given too much, too fast, when he burps, stuff will come up and he starts coughing. The past 2 weeks, this has happened about 4 times. I am beginning to think that Mike is starting to have problems eating.

Last night, from about 5:30-7pm, Mike coughed, choked and spit up. No matter how many times I tell Nathan to feed Mike slowy, he doesn't. He will give Mike a big dinner in 10-15 minutes. This does NOT help the situation. In fact, because of the way Nathan feeds Mike, I wonder if it is in fact the disease. I can't help but keep questioning what's happening. Could Mike digest better if Nathan fed him slower? Would the coughing stop if we gave Mike less to eat? I need to come to terms with the fact that Mike's body is slowing down. He cannot eat what he did last year.

The sad reality is that once he starts cutting back on his food, he will lose weight. Cutting back on nutrition will also make Mike prone to infection, skin breakdown etc. Once he cuts back on food, not eating at all will surely follow.

Needless to say I didn't sleep much last night. Even if he has a good meal or two today, in my heart I believe that his body is getting tired. I wish it were not true and only time will tell. He has surprised us before, hence the nickname "Energizer Bunny". He will continue to be our hero and we will continue to help him and love him.

Happy Birthday Brandon

Today Brandon is 15. I remember writing last year about Brandon turning 14, making his Confirmation and graduating from middle school. I can't believe an entire year has passed and Brandon is now finishing his first year of High School.

Mike is doing OK, it's one day at a time. Yesterday was a good day.

My Flight Attendant

As I mentioned previously, I have been worried about Mike. Last week he started coughing a bit more after eating. He seems to have alot of gas, which causes him to burp, which then causes him to cough. This COULD be a medical problem, Lord knows. When his gall bladder was infected, bleeding and filled with stones, he still ate, drank and acted "normally". History shows that there is no way for us to know whether Mike's issues are medical or the disease.

Because he's been having these "issues" this last week, I cannot help but worry that this is the beginning of his body giving up. While getting Mike into bed last night, I opened a discussion with the kids about this. Of course, Courtney got angry, telling me that I'm "looking" for trouble. Brandon was quiet though and I asked if he was OK. He said, "mom, you're my flight attendant. I look to you to see if you get nervous or upset. If you're OK, then so am I. If you are worried, then so am I".

You see, I am not a great flyer. Whenever we would fly somewhere with the kids, I would tell them that I always watched the flight attendant. Since they were experienced, they would know what's "normal" or not. If they looked OK, then I was OK. Imagine my shock when Brandon used that analogy with me last night.

Kids listen more than we know. I realized just how much my actions dictate how my children feel. What an amazing amount of pressure.

Mother's Day

Yesterday, like all other holidays during the past 7 years, was bittersweet. While I am blessed to have Mike with us, he is not the way we would wish him to be. When Mike was first diagnosed, the kids were 7 & 9. He was not able to drive and I would not let him take the kids out on his own. Therefore, I never really got any gifts for the holidays because after all, who would get them? It's not like I was ever a "materialistic" person, but I would be lying if I said that it didn't hurt just a little. When Mike was first diagnosed, he would get upset at his lack of ability to go shopping, so I decided then, then I wouldn't get him anything either...so he wouldn't feel bad. Instead, for the holidays, we always got something "for us", usually for the house. This way we could each say we got something, but it saved Mike the frustration of not being able to get anything for me.

Yesterday, things came full circle. Courtney, Brandon and Mike had gotten me two trees for the backyard which we had planted about a month ago. That was my choice and it was something I wanted. Yesterday, Courtney and Brandon, being old enough to walk to the stores on their own, went and got a card from them to me AND from Mike to me. Needless to say, I cried. My children, who's necks I could wring at any given moment, were mature and thoughtful enough on their own to do this. My emotions were all over the map. I was touched that they thought of this on their own, I was sad that Mike couldn't and I was upset when I thought of their age when Mike was diagnosed and just how far they have come. Alzheimer's has been their life, yet they seem to be doing OK.

No, my Mother's Day was not like most, but it was good. I have my husband still at home with us and I have my two wonderful children. We may not have all the gifts and glamour, but we have each other. In other words my Mother's Day was perfect.

You are Loved (Don't Give Up)

This is one of the songs I listen to on my way to work almost every morning. It is #2 on Josh Groban's AWAKE CD. It gives me the push I need many mornings to get through another day.
#7 on that CD is "In Her Eyes". I listen to that like Mike is speaking to me. It's beautiful and soothing and gives me the strength when I am weak. #15 on that CD is "Awake". It reminds me to appreciate the "moment" and not think about tomorrow.

I listened to the CD this morning because it hasn't been a great week. Between the infection on Mike's toe, his fever on Sunday and 2 REALLY bad coughing episodes, I am once again in the worry stage. In my heart, I believe the coughing comes from the fact that Nathan feeds Mike much too fast. I have told him to slow it down for months, but he doesn't seem to listen. This morning, I laid down the law. Mike cannot eat with the same vigor he did 1,2,3 years ago. His body is slowing down, so should we when we give him food. Nathan is so intent on getting Mike to eat, he doesn't realize that he's often finished with an entire dinner in 15-20 minutes. This is not good. The food doesn't get digested, Mike burps, starts coughing and then cannot stop. Last night made me nervous. There WILL be a day when Mike will no longer be able to swallow, and I'm not sure I will ever be ready for that.

Update

Mike seems to be doing "OK. Nothing else happened after his fever Sunday night, although we did notice the side of his face was swollen. Since he has no teeth, I was confused as to what that could be from. He is entitled, through his insurance, to be seen by a visiting dentist which we expect today. I'm concerned that maybe a piece of tooth was left in and could have caused an infection - who knows/?!!
His toe is looking better though, so that's a good thing. He is still on the antibiotic.
Yesterday I spoke at a community forum at Suffolk Community College which was sponsored by New York State and the Alzheimer's Assocation. It's purpose was to hear from caregivers and people in the field to try and find ways to make things better for patients and their families. I feel it went well, although one of the hardest things for me when I speak is hearing the collective "gasp' when I mention the age that Mike was diagnosed. When I first started speaking out, that would always shake me up and I would begin to cry. I am relieved to say, that even though that gasp was quite audible yesterday, I held my own and made it through my comments without a tear. The stories that were shared were often quite moving. All we can hope is that our voices were actually heard and that a positive change will come from our efforts.

Fever

It has been quite hectic at home, with my brother moving in. My dining room is filled with his boxes of things that he needs to sort out and put away. I can't continue to sort through my "stuff" in the room until his furniture is arranged as he wants it and I can get to my things. It seems like it will never get cleaned up, even though I know it will.

I guess I'm more concerned with Mike right now. He has another infection on his big toe that the podiatrist came to evaluate. She immediately put him on antibiotics. That was last Thursday. Last night, Mike had a fever (100.5). I'm not sure if it was from his toe or something else. Mike never seems to get a fever unless there's a REAL problem. At 2am I had to change him because he was drenched with sweat, which I assume was from the fever breaking. This morning he woke up and appeared to be fine, no fever. He went to the neurologist for a scheduled appointment and the Dr. was actually happy with the way Mike was - alert and smiling.

The waiting game begins and I can only hope this was an isolated incident which will not repeat itself and that Mike will be OK. As always, we turn to prayer.