Sunday, October 30, 2005

And now we wait...

We know a lot of people are checking this page for updates. We apologize for not having updated it in a couple days, but we haven't had the time (or the energy) because a lot has happened.

Mom had a severe coughing episode on Saturday, so much so that we thought we would lose her during the event. During that episode, she lost another significant amount of blood, and began to cough up other... well, "stuff". (The details aren't important, but it was quite gruesome.) But being the tenacious (OK, stubborn) bird that she is, she managed to survive through what even the nurses thought would be her demise.

Since that time, she has lapsed into what is effectively, if not actually, a coma. She hasn't responded to anyone in over 24 hours now. Not even turning her to change the bedding -- which up until now had to be done very carefully to limit the pain that it caused -- has aroused so much as a snicker.

She has had no appetite since before her last episode. The only fluids she is receiving are those necessary to deliver her pain medications. We continue to watch Mom very closely (the family is continuing our 24 hour vigil), but we are in full "comfort care" mode as we wait for Mom to be ready to move on.

Visitors are still welcome: she has expressed a desire to be around as many people as possible from the very beginning. And even though you'll have to settle for chatting with whovever is currently on "Mom Watch", she would probably welcome some new voices to listen to for a while. Hearing is the last sense to go, so we suspect she's listening in on at least some of the conversation.

Friday, October 28, 2005

A tough night

Mom had a pretty difficult night. She is, however, resting comfortably at the time that this is being written.

She had a coughing episode that resulted in a lot of blood loss last night around 1:30 am. The loss has slowed since then, and she was able to start resting as of about 2:30 am.

Her coughing returned for a bit this morning, but not as severely as what she went through last night. She is now resting again. Amazingly, she is alert and coherent, still recognizes everyone, and appreciates seeing familiar faces.

She is on a continous anti-anxiety medication to help her deal with the stress and fear, and she has limited control of her own pain medication. Her pain actually remains fairly low over the last 36 hours, but since she can only communicate by hand signals and our ever-improving ability to read lips (she can't talk at all anymore), we thought it best to give her the ability to determine when she needs a little extra dilaudid.

If you would like to come by, please do so. As I mentioned, she can't talk, but she is happy to listen to those in the room, and likes having the company.

Thursday, October 27, 2005

Change of plans...

Mom won't be going home afterall. Her condition took a sudden turn for the worse early Wednesday morning, and it is now unclear whether or not she'll return home at all.

She is suffering from internal bleeding -- which is most likely the result of the tumor invading something in her body -- and she is not strong enough to tolerate any tests that could determine the exact cause. She has been given a transfusion, but since the bleeding can't be stopped, continuous transfusions are not going to help. So we are doing everything we can to keep her comfortable, and otherwise keeping close watch.

She is still in Memorial Hospital and still quite coherant, although she does sleep a lot at this point. Her pain has decreased a great deal, which is at least serving to reduce her stress level. Her energy level is low, but she still appreciates visitors.

Family members are especially encouraged to visit.

Tuesday, October 25, 2005

We're homeward bound (we hope!)

It's true. Everyone at the hospital says that Mom can go home tomorrow (Wednesday). The doctor was ready to release her over the weekend, but because she is going to need continuing medical care for a few more weeks, we had to wait until the Home Health Care agency had a nurse for us. The reason for the additional care is to make sure that the staff infection is irradicated.

Mom had a good day today - for the most part. She did have a mucus plug that obstructed her airway today. Those are NOT fun - for any of us, but mostly Mom gets panicked when she can't get air (and rightly so!!!). When this happens, we have a saline solution that we squirt into her trach tube, and suction her airway like mad. This is followed by a breathing treatment (like for asthma) to stop the spasming muscles and reopen her airway. When all is said and done, she feels great!

But the rest of her day went very well. The pain medication is such that she is alert and active and comfortable. The physical therapist came by today and Mom was able to do an entire lap around the hospital ward. Not bad for someone who has been in bed - and extrememly ill - for the past month! I was proud of her, but you could tell by the smile on her face that she was proud of herself too!

I'm sure tomorrow will be an exhausting day for all: getting set up at home and trying to establish our own routine without hospital staff support. But this has been the goal all along: get Mom home and comfortable. Once the antibiotic treatment is complete, the plan is to have Hospice come in and be involved in her care from that point on.

One last thought for tonight: You would be amazed at Mom. If you didn't know she had a terminal disease, you wouldn't ever guess. She is strong, extremely coherent (I still can't get away with anything!), and still herself. She loves to laugh and socialize, and she is bound and determined to do things her way. Thank you all for your prayers. God is definitely listening.

Sunday, October 23, 2005

She's still here!

Apologies to all for the lack of updates. It has been necessary for someone to be at the hospital with Mom 24 hours a day - not because of her illness as much as for her protection! Since the tracheostomy, Mom has been unable to speak. This leads to much frustration on her part as well as the nurses'. But more than that, things "happen" in hospitals: crazy patients, wrong medications dispensed, and most of all - more pain medication dispensed when they don't want to deal with you. So Donna and I have been pulling Mom watch at the hospital full time and I have been unable to get to a computer.

Now... as for MOM...

She is doing great! The staff infection that she had actually turned out differently than thought at first. She had two. The first one was the skin staff that was nothing to worry about. However, the second one causes endocartisis, which means that bacteria attaches itself to the heart valves and lining of the heart. The second one IS a bit more serious, so she has remained in the hospital to begin treatment (4-6 weeks of continual penicillin drip). After an echocardiogram showing that she has a heart that is strong and healthy, they have devised a plan of treatment for this that we will be allowed to pursue at home with the assistance of a Home Health Nurse.

As for her pain, we have been fortunate enough to have Dr. Johannsen (sp?)come in as a consultant. He is the director of Hospice and a pain management specialist. His first question was "what is causing the pain?" After careful questioning on his part and a thorough exam of Mom, he ordered a bone scan to see if the cancer had gone into her spine. Again, Mom passed with flying colors: no cancer in her bones - anywhere. So it looks like the excruciating pain she has been experiencing is probably a combination of being bed ridden and the tumor causing pressure against the back of the neck. Dr. Johannsen has completely changed her pain medication, and Mom is responding WONDERFULLY!! She is able to move about, cough, and stay awake virtually pain free! Prior to all of this, the narcotic drugs just kept increasing while her consciousness kept decreasing. Now that Mom is feeling so much better, she is bored. If you are in the neighborhood, please come visit!

The only thing stopping a homeward bound trip at this point is paperwork. The phone calls and arrangments are to begin tomorrow (Monday the 24th), so it is possible that she will come home late tomorrow, but more likely on Tuesday. We are requesting fervant prayer for a speedy and safe trip home.

Saturday, October 15, 2005

A bit of good news...

The doctor now says that the staff infection that Mom picked up is the same common staff virus that exists on everyone's skin, and is relatively benign. She probably picked it up when she was given a shot and a bit of the virus was picked up from the skin onto the needle. These types of staff infection are reportedly not serious.

So she will stay on medication for the infection for the time being, but may be released from the hospital soon -- Yea! She's been running a low fever in the evenings and the doctor would prefer she go a full 24 hours with no fever before releasing her, but the expectation is that she'll be able to kick the fever in short order.

Mom is still dealing with a lot of pain, primarily in her back. The doctor is now uncertain if the pain is a result of the lung infection, the progression of her cancer, or possibly that her back has gone out of alignment from spending so much time in bed. It's likely that the answer is some combination of all three. Regardless, she continues to receive medication for the pain.

But the news about the infection is good news indeed. We're hoping that the fever will pass quickly and Mom gets to head home very soon.

Friday, October 14, 2005

Continuing the Battle

Although Mom is continuing to receive a smorgasboard of antibiotics, the main focus lately has been on pain control. Because she was requesting pain medication about every two hours, the doctors have decided to give her a pain patch that is time released. The first patch didn't seem to have much of an effect, so they doubled the dose this morning. She can still have the other pain medication, as needed, but we are hoping that the patch will allow her to use less of that medication, which in turn will allow her to be more conscious and alert (and pain free), rather than knocked out and pain free.

FYI: Her pain has mostly been in her upper spine area and across her shoulders, particularly her right shoulder. I'm sure some of the pain is from the lung infection, but it is possible that the tumor is pushing on nerves in her neck, contributing to the pain. Her pain is very manageable as long as she doesn't move ANYTHING. However, she starts coughing and her level of pain goes off the charts. Please pray that the doctors find the right combination of treatments that will make her comfortable.

Back in the Hospital

Mom has been back in the hospital since early in the week. She had a touch of pneumonia, and so the doctor wanted to get it cleared up. The good news is that the pneumonia seems to be under control. The bad news is that Mom has contracted a minor staff infection.

The only cure for the staff infection is antibiotics of course, so Mom won't be allowed to go home as long as she needs to keep getting the medication. The doctor tells her that this could take anywhere from a week to six weeks (!), but we're all pulling for Mom to kick the infection quickly.

Mom's incredible care giver, Frances, is dealing with a very unfortunate family emergency, and so has had to go home. We wish her well, and hope that she and her family can heal quickly from this very sad occurence. We also hope Frances is able to rejoin us soon.

With Frances' absence, Karen and Donna are staying with Mom (in shifts) pretty much non-stop. This is to help with Mom's personal care since the hospital staff focuses strictly on medical issues (medication, monitoring Mom's vitals, etc.). If anyone has some time that they could spend with Mom, Karen and Donna would really appreciate the help.

The best would be for Mom to be able to go home of course, so keep her in your thoughts and prayers, and hope for a speedy recovery!

Monday, October 10, 2005

It's harder than we think

Mom's pain has increased in the past couple of days. We were hoping that it was the stress of having a birthday and a new caregiver all at the same time, but it turns out that it is just the progression of the disease. Her pain is significantly worse, and includes the upper portion of her back. We are in the process of working with her nurse to see if we can get something a little more potent for her pain.
The pain has made moving around for her more difficult, which has increased the difficulty in keeping her lungs clear. She is running a low grade fever and may need to go back on antibiotics. Please pray for relief for her.

Sunday, October 09, 2005

Partying is hard work!

Mom has recovered from her "wild-and-crazy" birthday party, though it took some effort. She absolutely LOVED everyone's flowers (thank you to all who brought them!)... however, we had to remove them from the house because they made it difficult for her to breathe. Please do not be discouraged as she has been able to continue to enjoy them by viewing them through a window. So the lessoned learned: a card is probably better than flowers.

All the activity of her birthday wore her down pretty well. She took extensive catnaps on Saturday, but was feeling pretty chipper by day's end.

This was the first weekend for the relief caregiver - Katea (not sure of the spelling, pronounced "kuh-tay'-uh"), so that was a little stressful for Mom as well - there's no one like our Frances!! Frances will be back on duty this evening (Sunday) so all will be back to "normal" soon.

Saturday, October 08, 2005

Party Time!

We are happy to report that Mom's entire family attended her impromptu birthday get-together yesterday (Friday, 10/7). Her kids and their spouses attended, as did all the grandkids and great-grandkids.

Her brother John and niece Cheryl came by too! They even joined us for dinner, for which we decided on a traditional birthday feast...  pizza!

Mom couldn't join in on the pizza feast, but she did manage to nibble a bit of her Baskin Robbins Ice Cream Cake. Hey, who can resist Ice Cream Cake!?!

Mom continues to reside at home, and is doing well. She is able to get around the house on her own, but tires easily. So she moves about the house when she is up to it, and catnaps when she needs to.

As mentioned earlier, she enjoys visitors, but it would probably be best to call first, and please keep your visits relatively short as she will probably need one of those catnaps after your visit.   ;-)

Tuesday, October 04, 2005

More good stuff...

Mom has been home since Friday evening, and every day she continues to get stronger. The stuff in her lungs that they were NOT calling pneumonia (but giving her antibiotics for it anyway) has cleared up. She still has a lot of "stuff" that she coughs up, but that is a normal reaction when something foreign is placed in your throat.

For two nights now, she has only gotten up one time so both she and Frances have been getting more rest.

The home health nurse came out yesterday to evaluate Mom and her care. She was completely impressed with Frances and how well Mom was doing! The nurse also checked out a small area around the trach incision that Frances was concerned about. It appeared to be in the beginning stages of infection, but the nurse said that a little Neosporin would take care of it. The only other thing that the nurse recommended is that Mom get up and walk around the house, watch TV in the other room - anything to get out of the bed. All in all, Mom is progressing well.

FYI... Mom's birthday is Friday (7th). If you get the chance to drop by or drop her a card, it would really boost her spirits. Please remember that she is unable to talk on the telephone, so if you call, all she can do is listen! She does tire easily though, so please keep visits to a reasonable length. Thanks!

Saturday, October 01, 2005

There's no place like home!

We made it - finally! Again, it was an ALL day ordeal, but Mom made it home around 7:00 p.m. last night (30th). Of course it took a little bit to get organized and settled, but Frances took control and had Mom settled and on a schedule before bedtime.
After an amazingly good night's sleep, Mom got showered (the first in 14 days!!!) and was WALKING AROUND THE HOUSE, WINDING HER CLOCKS!!! Then she sat at the kitchen table and got caught up on her mail and magazines. That pretty much wore her out, but you could tell by the smile on her face that it was worth it!
She had family visiting today, as well as the home health nurse (who was completely amazed by Frances and her efficiency at taking care of Mom), and some of Frances' family: Mom, Dad, and her 1 year old son, Edward. All the visits - and the getting caught up on two weeks' worth of soap opera episodes, was a full day for Mom. But all-in-all, her coughing is less and her energy is more. Unfortunately, her pain is more also, but so far the pain medication is keeping that manageable so she is enjoying life more. It really was a wonderful day for Mom today.