Saturday, October 31, 2009

The focus of our fast

October 31st

Mom's body is continuing to heal. Her white blood cell count is down once again, right around 23,000. Everything in this reguard continues to move forward positively. My greatest concern today and for the past few days as she has improved physically is for her mental state of being. She is not responsive and at this point she should be. She is no longer sedated and today she was wide awake but she isn't there. She needs to be able to follow commands and protect her airway. I talked with her dr. about having a neurologist come and test her brain function. We can be as patient as we need to be in her healing process as long as we know she is still here.

This is to be the main focus of our fasting and prayers over the next day or two. It wouldn't surprise me if she has just "checked out" temporarily as a coping mechanism but it is still of great concern to our family and the doctors at this point. This is a very pivitol point in her recovery. Please pray for her mental recovery as well as her physical. We need to know that it is our mom that is coming back to us. Everything she ever was is exactly what we want back.

Friday, October 30, 2009

The power of a single word

Friday October 30th

Over the past 12 days we have been overwhelmed with talking and with words....many I've never heard before until now. Different medications, names of bacteria, and types of procedures. One word that has been overused is quite simply the word "if". Our days have been full of "ifs". If mom survives this, if they can diagnose the problem, if she responds to medication, if the ventilator can come out, if her fever comes down, if her organs are functioning, if she can hear what we are saying, if she is comfortable, if her swelling will go down, if the inflammation in her lungs has improved, if she will ever be the same. The unknown is scarey. It's scarey for anyone.

Today I felt was a better day. Changes....small changes but we'll take anything we can get at this point. I'm hoping that 2 days counts as a "trend" because her white blood cell count was down again. They came in at about 26,000. We are waiting for some more results on tests and procedures done yesterday but something different came in today. An identity to one of these bacteria. What a blessing, prayers are being answered. They once again changed her antibiotics to attack this strain. I am hopeful that everyday will show the improvements of this change in medication. They also changed her ventilator to the C-Pap function for part of the day in which she initiates her own breaths. It's making her work but to know that they think her body is capable of the work is comforting. The doctor says all of these things show improvements. I have to remind myself that all of this will take baby steps.

Today the word was "when". When mom recovers, when they take the breathing tube out, when we talk with her again. The ICU nurse today says she usually has a little intuition or gut instinct when it comes to her patients. She looked at myself and mom's sister Nancy and said, "This one isn't done". Whether or not that ends up being the case I'll take it today. We need every good word we can get. The overall mood today is good, there has been change.

I wanted to express my love and appreciation to all of you. Many phone calls from family and friends have come my direction, thank you. I haven't returned a lot of them but only because my emotions get the best of me. This is an extremely difficult time for me and my family. Your support is so appreciated and it will be something that we will continue to depend on in the upcoming months.

Thank you also for putting mom's name on prayer rolls across the state of Utah and beyond. I know that the power of the Lord is what we depend on to pull us through these difficult times. The power of the priesthood has also been exercised, thank you to the worthy priesthood holders in my life and in behalf of mom.

We invite all of you who are able and willing to participate with us in a fast on Sunday November 1st. We are uniting as friends, family and ward members to exercise faith in the Lord's plan for healing and comfort at this critical time.

Thursday, October 29, 2009

Thursday October 29th

Another day in the ICU. I sit and feel so much anguish with the situation that we have been so abruptly put in. I look around and see how many others are dealing with their own pain and loss. Different situations, different circumstances but we are all feeling and expressing the pain we feel with having loved ones fighting for their lives. Life feels so unfair right now.

Everyday we continue to face new challenges and many of the same. More tests continue to be run in hopes of finding the strain of bacteria that is infecting our sweet mom. Her white blood cell count was down today to 29,000. Still very high but less than yesterday. The doctors say that is only a clear indicator of improvement if it continues to be a trend over the next few days. Her fever has been down a little today which is wonderful. It just doesn't seem right to have a cold fan blowing on her when it is snowing outside.

Really this is a true test of patience and perseverance. We hope everyday for that glimmer of hope, a breakthrough so that we know that we have really passed the worst. There is really no way to know what challenges we will be presented with next. The only thing that I know for certain at this point is that no outcome to this situation is going to be easy. No matter what happens, it's going to be hard.

Wednesday, October 28, 2009

Wednesday October 28th

It's apparent to me today how much the way I feel is very dependant on the nurse that is with my mom on any particular day. We've had many. Today the doctor's didn't give me a whole lot to go on. They have all been wonderful and very diligent in speaking to me and answering my questions but much of what it happening is a question not only to us but to the doctors as well. Her white blood cell count is 37,000. Up again today. I find myself just in awe at how this could have even happened.

They have been culturing her blood, urine, and in her respiratory tract. Today the nurse pulled up her charts and it's clearly showing that she has a strep and staph infection. This is on top of everything that she came in with. These bacterial infections she has contracted since being in ICU. She is on broad spectrum antibiotics that should be able to treat these strains. We are praying that this is indeed the case. Hope is all we need. She is still sedated with the breathing tube. They want her to be comfortable while she continues to fight a good fight. We love you mom.

Tuesday, October 27, 2009

Tuesday October 27th

Quite simply tonight I am prayerful of miracles. Not a lot of change to report today. Progress is testing our patience. She is still battling infection and Acute Respiratory Distress Syndrome. Her lungs are full of inflammation and her white blood cell count remains high....too high. I know nothing more than she is in the lords hands and he loves her even more than we do.

Monday, October 26, 2009

Monday October 26th

Mom looks good today. She seemed positioned well and peaceful as they have continued to keep her sedated. It's going to be at least a few more days with the breathing tube but she was having some productive coughing. It was interesting to see her cough without making a single noise. The nurse and respitory therapist seem to be keeping her suctioned well and she has really been clearing out.

One thing that concerns me every time I see her is her lips. Today they looked the best they had so I was really pleased. Her nurse Jessi is really looking after her. I had her clean her teeth again although I know they do brush them, it made me feel better to see her do it again.

She is stable and that is comforting. The biggest hurdle that we seem to be facing is the infection that she has that has yet to be identified. Her white blood cell count is 30,000 where you and I that are healthy are about 10,000. They know there is infection plaguing her body but it isn't responding to the antibiotics that she has been receiving. As of this afternoon, they switched things up to some drugs that can aggressively attack more types of bacteria. We are praying tonight that when blood tests start coming in tomorrow that their is a noticeable change in her white blood cell count. I think at that point we would know that we have turned a corner and we are going to get this. I am so proud of my mom, I think how grateful we are everyday to know that she's ours..... forever. Thank you for your prayers and concern for our mom......Christy

Sunday's Report

I had a long talk with the Dr. last night. I am nodding and listening but after everything is explained I feel like I've missed everything. Being an advocate for someone in this situation I've decided is like being a "MSI" or medical scene investigator. The one thing I am inexcusably always lacking is my notebook. Processing the details of this is harder than I ever imagined. Hope is the only thing that we need to keep going. We have hope....mom is a fighter.

With every new day and every shift change brings new challenges. We are rehashing over the same things, looking for changes and learning that even doctor's don't know everything and in some cases they know nothing. We want nothing more than to know mom is being taken care of in the best way possible. We know she doesn't mean to any of the nurses or doctors what she does to us so that is why we are there...everyday. We know she is in good hands, but she's not in ours.

At this point they are baffled as to what is causing the continued infection in her body and the inflammation in her lungs. There is also concern for her heart. They are treating her with blood thinners to prevent clots and just looking endlessly for an explanation. We are praying today for them to find the cause or explanation so they can treat her. Her kidneys and liver have made improvements.....we are grateful.

Sunday, October 25, 2009

The Story...one week later

Our hope is for this to be a log of our journey, a release of our thoughts and feelings and a way for those of you that love our mom to remain updated as to her condition.

Monday October 19th: My Dad calls to tell me that Mom is to be taken to the hospital as per her MS doctor via the emergency room to be admitted. He wants me to come and help to dress her and prepare her. When I arrived her condition had become such that we needed to call the ambulance to come. They arrived to find her oxygen and heart levels dangerously low. They loaded her in the ambulance and my Dad went as I followed in my car behind calling my brother, sister and close family to come as soon as they could. After arriving she started to become coherent and could talk to us. One of the first things she was concerned with was pistachio icecream. It made us smile during a time we needed comfort that she was still with us. They quickly determined by her symptoms that she was in Septic Shock. A serious condition that we knew little about. There was to be determined an underlying cause that put her body in shock that they were working to diagnose.
They immediately started her on antibiotics and other medications, it then was neccessary to sedate her and put in a breathing tube as she was admitted to the ICU. Mom received a blessing from Dad and Andy. We began our vigil.

Tuesday October 20th: The doctors have determined that she has a very serious double bacterial pneumonia....life threathening in and of itself. We had lots of family support today. Uncle Dave, my mom's closest brother flew in from Colorado in the morning to be with us. Nancy my mom's only sister stayed close and Vicki, our dearest and oldest family friend served as a great comfort as the doctor's optimistically gave us a 50% chance of recovery. A very trying and emotional day....a day that we all sought the comfort of the priesthood. (Thank you Uncle Dave).The heart looks good and the lungs are as well as can be expected considering that they are full of pneumonia. Concerns for other organs. She has had a blood transfusion by now to get rid of the all the bad blood that was in her system poisoning her organs. We pray for good reports from the Dr.

Wednesday October 21st: Things look to be showing improvements. The Dr gives us a hopeful 80% recovery. Her kidneys are doing better and her liver enzymes are lower. We all feel relief. She is still pretty drugged but is responding to us with head nods. Andy and I spent some time with her telling her how much we love her and how proud we are of her. She is a fighter! Andy tells her that it is no mistake that she is our mom....we chose her and wanted to be together as this family. A tear streams out of the corner of her eye. We know she's there and knows we are too. Andy asks her if she wants him to come and read to her, she shakes her head no. I tell her that we will come and just talk to her. She shakes her head no....too much talking I guess. She nods yes to us just being with her. Grandpa and Granny Dixon are here with us today. We are happy they can be with their daughter. It's hard for all of us to see her this way. We pleased with the progress.

Thursday October 22nd: Everyday we are hopeful that she can come completely out of sedation and have the breathing tube removed. Today is yet again not the day nor will tomorrow be. They are feeding her through a tube a low calorie diet. Digestion is the last thing that your body works on in a condition like this. We feel she will be the most comfortable with this regimine. We are still getting updates from the doctors daily. She continues to improve with organ function. They are concerned with these "spells" that she is having that increase her heart rate and affect her blood pressure. Noone can determine the cause.

Friday October 23rd: We are so happy when we learn her fever is down.... the infection is leaving her body and she has been breathing all on her own for nearly 8 hours. By the time I see her again in the evening she has had another spell in which they had to put her on 100% oxygen and her fever has spiked again. As she became stable they were able to wean her off again closer to 60%. Still showing overall improvement, just no understanding of the effect of the episodes on her heart. They go back and forth in telling us of a possible heart attack. At this point they refute that.

Saturday October 24th: It's official we are all baffled. The doctors have been doing a series of heart tests which are showing nothing. Everything is looking good, we are working on getting an understanding on what is happening with her heart. Three days with the spells and noone is able to determine the cause. This is our hurdle today. We are praying for the doctors to be able to have the inspiration and understanding of this condition and how to treat it.

Thank you for all of the support that you have offered our family. We appreciate the concern for our mom as well as us. Your prayers mean everything.