New Moon~1 month anniversary!

Think About a Thank You

Imagine having your daughter’s doctor also be her Bishop. Talk about efficient care! Mary has had great personal care from her doctor. We had the additional blessing that the neurosurgeon who specializes in her illness was on call that late Saturday night. These experts spent years preparing to save people like Mary.

My goal was to record every nurse's name that worked with Mary. I cannot say enough about how wonderful her nurses and CNA's were. Amazing. Most of them helped Mary through some very dark times. Some made the difference between peace and anxiety for not only Mary, but for each of us. 

Kudos!

Denise--1st Legacy Triage nurse; David (ambulance tech on route with Mary and I) who stayed with us for an hour; Tad--Mary's 1st nurse 3 nights in a row.

Cindy, Cate, Kay, Jayde, Barbara, Andrea, Andy, Dan, Yelena, Olya, Amber, Amy...I'm forgetting a few.

Some nurses gave me great advice in those first days when they could see ahead for me: 'get your sleep, let others help you...'

The CNA's, who are paid far below their value, were often the most comforting to Mary:

Rachel, Kimmy, Kim, Whitney, Sofie, Virgi, Vladimir, Alesya, Dixie...brushing her hair, held her hand, laughed with her, helped her get in and out of bed, fix her lines, clean her messes, change her bedding. 

It is quite unfortunate to hear that the ICU has lost the CNA staff. Starting the week after Mary was discharged, they are no longer assigned to the ICU patients. There has got to be a smarter way to save a buck.

Kimmy & Mary, ICU CNA

Mary & Rachel, ICU CNA

Mary & Cindy, ICU RN 

Super Computer


Brad graduated in computer science. He used to tell me about Super Computers and how they would fill entire rooms. In just a short decade, nearly all of technology has rapidly adjusted from huge to minute. What used to fill an entire room to run complicated systems, can now fit in your palm. There still are Super Computers, but nearly all of technology has adapted, improved and excelled with time.

Mary’s brain is a ‘Super Computer.’ We started seeing little signs of it when she was much younger. Her soccer coach at age 5 told us that Mary is left-footed. She’s right handed, but to be left-footed (along with super fast!) in soccer is a huge advantage. Age 8 she began learning French in the mornings at her school. She has spoken French ever since. During her high school years, we realized she may be close to having a photographic memory. She had the lead role in 3 school plays. After 2 weeks, as we would review the script with her, we realized she not only had her part memorized, but every other part!

This last semester at BYU she was struggling with her political science class. The professor gave each student a copy of the previous semester’s final exam to prepare for the final. Mary called me: ‘Mom! We get to study the previous final! This is perfect for me. I will just memorize the whole thing.’ 225 questions~memorized~in 2 days. She got a 92% on the final.

Because Mary was born with an AVM in her left temporal lobe, her Dr thinks that her brain had to adjust from the beginning. This AVM took up space and so the other sections of her brain may have taken on some of the temporal lobe’s functions. This may be the reason why Mary was able to speak so well, so quickly. He reminds us that this was a ‘significant bleed and the blood clot is still large.’


Her brain is a Super Computer. It has adapted and adjusted to the AVM for the past 20 years. While the temporal lobe heals, the rest of her brain is helping to perform those functions. That’s the science of it.


Or...in other words, it’s a miracle.


Non-Fiction


Once upon a time, there were 2 young boys, ages 5 & 6. They grew up together in the same town, attending the same schools and church. They shared all the same interests. They both became high school drum majors. They attended the same university. Their wives became friends. After college, they all ended up living a few minutes apart in the bay area of CA. They had their first babies, who spent years enjoying the same parks together. Their next babies were born in the same hospital a month apart. Then they had career changes and moved apart, 1000 miles from each other. But the friendship continued as best it could. 19 years later, those 2 girls born so close together, would become best friends. They were accepted to the same university that their fathers and mothers attended. They shared the same whacky sense of humor that their fathers also share. They helped each other have a fun first year 800 miles away from their homes. And then Mary came home for the summer. And then came June 19, and 30 more life changing days.


Imagine how happy Mary was to see Hannah, on her front porch last weekend! What a wonderful surprise. There is no better ‘medicine’ than a friend. This challenging week really did have a happy ending for Mary.

Mary & Hannah

Head Games

There is an unsung hero hanging around here. He has been in the shadows for much of the past month. He was ‘passed’ around from family to family. He didn’t see much of us or Mary in the first few weeks. But he has become a vital part of Mary’s healing process.

Thomas is only 13, but he has taken on some important roles. Mary has weekly speech therapy and one assignment is for her to do 30 minutes of online therapy work everyday. Thomas is her coach! He helps her understand the process and answers questions. He reports to us and to her therapist on her progress and struggles, if any. This allows one thing to be off of my ‘plate.’ But more important, they’re getting closer as they work together. Sibling rivalry became teamwork. Problem solved!

Think you’re so ‘smart?’ Try these:

http://www.lumosity.com/  

http://www.happy-neuron.com/profile/

Mary & Thomas therapy

New Moon

Mary is doing great. Let me start there. Everyday we remind each other of how many wonderful blessings there have been from the very first day. She beat tough odds. It could have been much worse!

But, this past week brought new challenges. Several episodes a day of ‘shaky’ vision: ‘Mom. There’s an earthquake goin’ on with my eyes.’  More pain but pain meds not working for a full dose. Increase in heartburn: ‘Be honest. Am I going to throw up?’ Feeling exhausted, but not being able to fall asleep. So we adjust. We get creative. We find new ways to give relief and still have some fun. It is not hard to have fun with Mary! 

She is working hard to get well. Sometimes ‘working hard’ means she has to nap. Or choose eating over talking. Or get to bed at the early hour of 11pm! Or eat when she is not hungry. Or miss church~again. Or have to cancel a visit because ‘there’s an earthquake in my eyes!’ 

But Mary will get well. She will beat this. Did you ever see her on stage? Did you ever see her play soccer or run a race? Have you ever joined her in a debate? Just watch her! She’ll be the ‘Female, age 19; less than 1% of the population with an AVM; less than 1% of those, who survived a significant bleed in the left temporal lobe; and not only lived but recovered 100%.’ 

“Go Mary! Go Mary! Go Mary!”

Mary Day 26~July 14, 2010

‘Mom. It feels like June 19 all over again.’

We all thought Mary would be ready to attend church this past Sunday. On the way to church, she, Phillip and Jessica even joked about her condition. As we walked in, she expressed a little nervousness about seeing a lot of people. We ‘flanked’ her on all sides and quickly found a pew.

If you know Mary, she can be a good ‘actress.’ She tried to tough it out the whole meeting. I watched her every move. She closed her eyes a lot. (Turns out she was praying to feel better in those moments). She was having vision problems~it seemed like everything was bouncing around. She was in pain. She could not focus on any of the words. She doesn’t remember anything that was said.

After 40 minutes, we moved to the quiet foyer. But after a few visits with passersby, she had her head in hands, some anxious tears and she could not speak correctly. A friend raced us home. The florescent lighting, the loud noises, music, speakers, pressure to greet and visit, all were too much, too soon. Also, it could have simply been just a random 'bad hour.'

It’s about time!

Now we find ourselves in the part of recovery that I worried about the most. The ICU was actually predictable, self contained, and felt safe. Now that Mary is home, we face new challenges and we sometimes feel pretty vulnerable. She has ups and downs several times in one day. She will be fine and feeling great and within a few minutes, she has intense pain. Even with her excellent pain medicine, it takes 30-60 minutes for it to kick in. She could have headaches for up to several more months. This will improve over time. Mary’s brain trauma has affected her appetite. She feels full all the time. Nothing is as appealing as it was before. Much of my energy in a day goes toward her calorie intake. This too will improve over time.

One reason we don’t have a lot of visitors yet, is that Mary feels the need to ‘entertain’ when people are around. She won’t stop talking. She may not even realize she is in pain or that she needs to eat or drink. She gets tired more quickly when she talks to people. If you arrange a time to visit with Mary, keep it to about 30 minutes. Be flexible in case she doesn’t feel well. Try to find ways to be the one doing most of the talking, and let her listen.

‘I’m fine!’ Or in others words, ‘Are we there yet?’

Mary loves to text, email, write thank you notes, and be on Facebook. These are all excellent tools for Mary and they help her to pass the long hours at home. Be aware that looks can be deceiving though. So can Facebook posts. Of course she can’t drive, work or even be alone at all yet. But she really does feel pretty good much of the time now. It’s the 3-4 times a day she doesn’t feel ‘fine’, that you may not be aware of.

If you broke your leg, you would have a clear path of the healing process. Get an xray; get a cast; X number of weeks to heal; get another xray; cast removed; yeah! Go swimming! All better. The brain does not heal so quickly nor in such a precise way. The left temporal lobe controls many important qualities: spoken language, processing of language, comprehension, any foreign language, reasoning, logic, and cognitive skills.

Mary really is doing remarkable. But she is still healing. She is on a road to recovery. One big challenge is that no one knows for sure the exact end to all of this. She would like to know when that day will come. She told Dr. Shanno last week, ‘I would like to know the day and time that this will all be done.’ So would we Mary! So would we…

What are your plans this summer?

Mary & Maggie

                                                       



















Mary is encouraged to go on long walks. We walk every morning, 6 days a week, 3-5 miles. She can go lay out at the pool and get in the water (with someone!). We have gone to a movie. We have gone out to eat. We try to do 1 thing fun each day! 

In early August, she has another CT scan to see if the blood clot has completely dissolved. We meet with her surgeon. When it’s all clear, she will have a procedure called ‘Cyber Knife’ which will ‘kill' the AVM that caused this bleed in the first place. Then every 6 months for 2 years, she will have a scan to track it’s progress. After about 2 years, the AVM should be ‘dead’. In the meantime, most of her symptoms should gradually improve. Her speech and cognitive abilities should also be almost at 100% within the next few months.

Lights! Camera! Action!

Our family loves movies. I can tell you the first movie each of my kids saw from oldest to youngest: ‘Ghostbusters’, ‘Little Mermaid’, ‘Beauty and the Beast’, James Bond’s ‘Tomorrow Never Dies’.  Many of the sub-titles in these email updates have a movie theme! Eventually, Phillip would like to make a short film about this amazing event in Mary’s life. She will play herself!

Phillip just graduated from film school. He loves to relate life to running a film set. While he was here these last few weeks, he said, ‘Mom, you are like the Director and you need us to be the Assistants to the Director.’ And so, everyone ‘plays a part’ and the scenes are still unfolding.

As the credits roll by, no one part has been too small. Each of you has had an important role:

Emails~flowers~cards~prayers~fasting~calls~treats~texts~helping with Thomas~helping with dogs~weeding our yard~watering flowers~ packages~traveling long distances to help us~teaching my Sunday class~errands~helping Brad car shop~loaning cars~cleaning my house~laundry~Costco runs~and the credits continue on…

Phillip & Jessica, BYU graduation April 2010

                                          

 


Above and Beyond
Can you imagine such young people dropping everything in their lives to be here and help us for so many weeks? 

Lauren is a close friend of Catherine and Mary. She drove Mary and I to the ER June 19 and has seen all of this with wide eyes and supportive arms for such a young woman. She even took a night shift at the hospital so we could have a night at home together. She has also been our 'Nordstrom Spokesperson' for Mary, hoping to bridge the gap until she is able to work again.

Catherine, Lauren and Mary 2 days prior to Mary’s hemorrhage

               

Catherine was back here on a plane 48 hours after having just visited us. She left her newlywed husband, Kris, and life in CA, came up here, and did not leave my side for 96 hours. Day and night. She helped me to sleep. She loved Mary like a mom. She managed my cell-calls and texts. She gave updates to friends and family. Kris was able to be with us for a weekend, and was happy to share Catherine with us for 9 wonderful days. 

                                                              
Mary & Catherine, May 1

Phillip and Jessica left their jobs for nearly 3 weeks to be here. They took night shifts, met with surgeons, read CT scans, did 40 loads of laundry, 20 loads of dishes, cleaned the whole house, tracked Mary’s progress and worked as long as I did each and every day. They even took Thomas for a long weekend to Jessica’s work retreat. It was at a private ranch in eastern Oregon. He had a blast chasing cows in the money grab, watching live rodeo and demolition cars, and camping. It will have been a highlight for Thomas in this unexpected summer.

Phillip & Thomas

                                                    

  Phillip & Jessica

                                                  

















My sister April is a charge nurse at SWMC. She was able to provide us with knowledge and comfort over and over. She stayed overnight several times with Mary to give us a break. She even stayed overnight with us for Mary’s first night home. She was a familiar professional face to the staff, which 
sometimes gave Mary more than ‘just another patient’ status.

    Peggy's sister, April

                                             

Each one of you has had an impact on our family and on Mary in some way. We are so grateful for your love, support and kindness toward us. This whole event has shown us what we are made of and where we stand. It has brought us closer together than we ever were. We are different than we were June 18. I hope you feel the same, even in some small, simple way.

More to come~

Peg and the Fam

May 1, 2010 The Goodwin Family

                                        

Day 14~AKA ‘Milestone’ July 4, 2010

Wait--What happened?

Mary finished her freshman year at BYU in Provo, UT and was eager to land a great job for the summer. She needed to save enough money to augment a part time job in the fall, and to prepare for study abroad in France next spring. Not a great year to find a summer job. But Mary was persistent. After 2 interviews and a month of patience, she was hired to work at Nordstrom. Not too shabby! Great hourly rate and commission on top of that. She was so excited! She has also been a nanny for several families in our area and with both jobs, she would be able to reach her goals.

Friday June 18 9pm~Mary finished up a 72 hour nanny job.  She watched a movie here with us. We hugged at midnight and looked forward to her first day at Nordstrom in the morning.

Saturday June 19 9am~Brad and I left for the day. I had a reunion. Brad had to prepare our trailer for our upcoming reunion in CA and had a lighting director assignment for a concert in Portland.

9:20am I talked to Mary on the phone: ‘Mom I have to hurry. I’m late.’

9:30am Mary printed off a map and directions to her Nordstrom training in Portland.

9:31am Mary had sudden extreme pain in her left temple area. She could barely stand up. She went back to lay down in bed.

4:45pm I arrived home and saw her car still in the garage. Odd…maybe she came home early? Maybe she lost the job? I found her sound asleep in her sister’s bed.  I stood at her side and looked at her. She was out. I decided to run 1 quick errand for Father’s Day.

5:35pm I texted Mary and reminded her we had 2 graduation parties to attend.

5:45pm Mary called me: ‘Mommy. I threw up. Will you help me?’ I had a lot of questions including ‘What about your job? Did you go today? Did you call them?

6:00pm I arrived home and found Mary, head in hands in the kitchen. She could not communicate except for, ‘Shhh Mommy. Shhh.’ I was unaware that there was a serious problem for 10 minutes.

6:10pm I had a strong feeling that I should stop and listen to her. Ask her some questions: Mary. Where do we live?  ‘Vancouver.’ What is your dog’s name?  ‘2.’ What holiday is tomorrow?  Fourth of July.  Ah-oh! Something was very wrong.

6:15pm I called Brad and he didn’t recognize my hysterical voice. He said to get her to the ER.

6:20pm Our friend and Bishop, who happens to be Mary’s primary care physician, arrived at our house. (He lives 2 minutes away and Brad called him.) We couldn’t figure out what was wrong but it appeared she was either sedated or having a major migraine. She mixed up words ie: ‘I don’t want to go to the library!’ (hospital). Mary started to fade away.

6:30pm We headed to Legacy Salmon Creek ER. My dad met us in the waiting room.

7pm After confirming that she was not a teenager who has OD’d, the ER Dr ordered a CT scan.

7:30pm As the scan came up on the monitors, I could see a large oval shape on the left side of Mary’s brain. Not good. One tech says to the other ‘Do you see that?’ He nodded. I asked, ‘You can’t say anything to me, correct?’ ‘No, but I will tell you that she will be transferred to another hospital for sure.’

8pm the ER Dr ran to the room before we arrived back with Mary. She grabbed my shoulders and said: ‘Things are going to get really crazy now. Mary has an AVM. Just remember it sound’s like ‘ATM’. It is a cluster of unnecessary blood vessels in her brain. She was born with it. One of the vessels has burst and she has a large blood clot there now too. The only surgeon who specializes in this is at SWMC. You are so lucky! He is on call tonight and he will meet you in the ER when you arrive. Also, the ambulance will have on sirens and lights so they take you right in without delay.’

11pm we arrived at SWMC ER. There was a huge team of doctors and techs. The ambulance techs stayed with us and Mary for an hour. Brad and my family arrived. While they worked to stabilize Mary, we saw a friend standing near the room next door. He had a church friend in there who had just suffered a heart attack. Age 35. On Father’s Day. We sadly learned later, he passed away about the time Mary was stablized.

12pm. We met Dr. Shanno, her neurosurgeon who had just finished another surgery. He explained a plan and promised to meet with us in the ICU the next morning.

1am Mary was in her room at the ICU. I stayed the night. Brad and family headed home.

It’s not brain surgery!

~Mary was born with an AVM (arteriovenous malformation) in her left temporal lobe. We had no idea she had this. You usually don’t know you have it unless it bleeds. It is not genetic.

~One of the vessels in the AVM bled for approximately 10 seconds and immediately formed a clot the size of a business card. This could have been fatal.

~Because of the location of the AVM, after her angiogram, they discovered that surgery is not an option. The carotid artery goes right through there as well as other vital blood vessels. Surgery would be far too risky and can only be a last resort.

~Mary spent 12 days in the ICU and 2 days on the floor. Managing her pain and keeping her vitals stable were the goals.

~Her Dr’s said ‘Once she gets to day 14, we will breathe easy.’

~She still has the AVM, the blood clot and swollen tissue. It will take up to 6 more weeks for the blood clot to resorb. The swelling reached it’s peak around day 13 and has began to subside.

~She will have another CT scan in about 6 weeks. When the clot is gone, she will have Cyber Knife radio surgery (sounds like a Star Wars procedure…) It is all exterior and will ‘kill’ the AVM. If this procedure appears successful, they will also perform an embolization to the area which will prevent any bleeds of the AVM. Even after the radio surgery, it will take up to 3 years for the AVM to ‘die.’ There is a 4% chance of another bleed every year until the AVM is gone.

*With most brain AVM’s, the surgeon is able to surgically remove the AVM and the blood clot. This was not an option for Mary.

Hallowed ground

When you walk into Mary’s hospital room, you immediately can sense that you are in a special place. Even when she has been in agony, she almost always finds a loving or complimentary thing to say: ‘You are so beautiful. You are amazing. Your skin looks so good. I love you~do you believe me? That I love you?’

Even today, spend just 15 minutes with Mary and you will walk away a happier, better person. You will laugh and you will feel ‘verklempt’ at least once. Mary is now sweet, innocent and without guile. She has experienced a sort of 'hell' in this ordeal and came back to us angelic.

Selective Memory

The location of Mary’s AVM and blood clot controls all of her language skills. It has been a wonder to us how Mary does not remember certain words or people’s names, yet she can still entertain us with impersonations and recall actor’s names and details of movies. We were quietly discussing a new release in her room and she perked up and said, ‘Oh! Knight and Day. That movie was just released a few days ago.’

She still has trouble with vocabulary and some names. Today she couldn’t remember ‘pillow’ or ‘deck’, ‘text’ or ‘gum’ (‘You know, the small shape you put in your mouth and go ‘chomp-chomp’?) And yet…in the throws of agony, once when I was desperate for any way to give her some comfort, we tried to help her visualize someplace beautiful and relaxing. Hawaii. I was weak and told her that when she is all better, we will take her to Hawaii to celebrate.  She reminds me of that every day!

Miracles On ICU

I do not profess loudly. I am quite discreet (publicly) about my political and religious opinions and viewpoints. However, I would be a hypocrite if I did not tell you that we have witnessed 2 miracles within 2 weeks.

Mary should not have survived her AVM bleed. Her doctors would say, ‘We look at these scans and we look at her. As bad as she is, she does not even come close to the severity of the situation. She should not even be conscious, let alone able to speak.’

Mary has almost total recall of not only what happened the day of the bleed (any neurosurgeons interested in amazing details of an AVM bleed?!) but also of her life before. Certain words and some cognitive abilities are not clear yet, but with therapy and time, they expect a full recovery. Mary survived!

A few days ago, Brad called me and said, ‘I’m OK…’ Not the words you want to hear when your life has already been turned upside down. He had been rear ended by an SUV going 45mph on Hwy 14. He was pushed to the concrete Jersey barrier and went on 2 wheels along that. He then went 100 feet, pushed under the rear of a small pickup truck. She was uninsured.  Brad survived! Not even a sore neck. “Miracles happen everyday, change your perception of what a miracle is and you'll see them all around you.”

There’s no place like home…There’s no place like home…

Wednesday night Mary slept more than a few hours, for the first time. Thursday Mary got up and walked a few laps of the 7^th floor. Friday afternoon, her Dr’s recommended discharge to home instead of ‘in house rehab.’ She is high level functioning: she can walk, climb stairs, brush her teeth, get dressed, feed herself…etc.

What she does need is out patient therapy for speech and cognitive skills. Her doctors want her to rest, sleep, nap and thrive in her own home.

In a recent post, we asked you to continue to pray for Mary to just have relief of her pain. Mary’s pain began to decrease once she was able to get some sleep. She can go several hours longer than before without a pain pill.

Friday July 2, (Also known as Day 14)

3:00pm~With 2 nurses at her sides, Brad and I asked Mary: ‘If you could go anywhere right now-anywhere you wish-where would that be?’ ‘Home.’ ‘Okay! Wish granted! We’re going home right now!’

With sincere thanks to all of you~Peggy and the Fam

*Mary will begin out patient therapy this coming week and meet with her Dr. 

Lucky Day 13~July 2, 2010

Groundhog Day...

Every morning I wake up and for a few seconds, I have that groggy feeling of, 'Wait--did that really happen? Oh yeah. Mary is in the hospital.' 

Within a single day, we seem to have similar patterns of ups and downs, laughter, tears, intense pain, and periods of calm where Mary is able to converse, watch a show, or eat. One of us will have a great shift with her and another will be exhausted from no relief. Neuro checks are every 1-2 hours (‘What is your name? Where are you? What is the date? Why are you here? Raise your arms. Smile. Squeeze my hand. Release...’) Shift changes are every 12 hours...and so on. 

Since June 19, it's been some version of this. Every day. 

It's like 'Groundhog Day'--over and over again…

sym·bi·o·sis

About a week ago Mary first began conversing with us and was actually joyful. I felt joyful! Friday she went downhill quickly, went back to the ICU~she lost her spark. I was scared. 

For many hours she has suffered and asked ‘Why? Why? Why’.  (I have so many questions it wears me out too, Mary.)

Mary got angry for the first time this past weekend. She had not shown any anger through all this pain. But she was mad! Her tone was sharp.

That night as Brad and I crossed the quiet, cavernous lobby to exit for home, I let myself go.  I told him my list of frustrations and concerns: New doctor; back in the ICU; pain worse; still no sleep; seizures; I felt angry.

When we got home, we could hear Catherine weeping in her room. She feels as close as I do with Mary. It has been so hard for her to watch Mary suffer. They are only 19 months apart~‘CC and Mimi’.

The next morning as I lay awake, analyzing all of this~I realized that we are symbiotic with Mary. We mirror how she is feeling.  Mary! Hang in there! We will ride these waves together.

Sleeping Beauty

7:15am yesterday, my sister April, charge nurse on 3 South at SWMC, checked on Jessica and Mary after her shift. She texted: ‘Peggy-you awake? Both girls are sound asleep!’

Mary had not slept more than 90 minutes at a time since June 18. On day 11, Dr. Le told us she has sleep deprivation and ICU delirium. He said that if any healthy person had not slept like that, they would have similar complications. She needs sleep! But her brain won’t let her sleep deeply; the staff must do neuro checks to track her swelling; and the pain has been far too great for her to sleep.

Tuesday night she slept 8 hours straight!

Movin’ On Up

In the first decade of our marriage, Brad and I moved 9 times.

In 13 days, Mary has been in 2 hospitals, 2 ER’s, the ICU, and 5 different patient rooms. Ask my kids~we are getting really good at packing up the cart and moving our patient!

Yesterday we moved Mary out of the ICU onto ‘The Floor’ (regular surgical patient floor). 

Mary with clean, braided hair! (Jacqueline Shirley braided Mary's hair)

 A New Mary!

She took her first shower in 13 days! (Try not to dwell on that…) She washed her own hair as I stood outside the curtain. ‘I will do it myself, Mommy.’ I made her talk to me the whole time to make sure she was upright and conscious. Remember, she hasn’t stood up or walked more than a few steps for almost 2 weeks!

She had a 10-minute warm shower and is now a very clean girl.

Mary has very meekly and sweetly told us many times in some of those difficult hours, ‘I am a new person. I am not who I was before. I am going to treat you better than I have. Do you know that I love you? I love you all so much.’

Will she ever realize that we are better because we have witnessed her go through this trial with such grace and strength? Amazing girl.

My Right Hand Man

Catherine was able to come home and visit us for 5 days in June. Kris had training back east so she came to be with us. Mary and I had a lot of fun ‘girl time’ with her! I’m so grateful for that week. She departed Friday evening. 12 hours later, Mary had her brain bleed. 48 hours later, Catherine was back on a plane to be with us again.

She didn’t leave my side for 4 days and nights. She slept where I slept. She listened to the doctors with us. She understands more than we do because of her pre-med studies.

She was able to be here for 8 days. We feel her absence this week and realize how invaluable she has been to Mary’s well being and to us!

Loss of Words

Words seem so shallow sometimes. How can we express the overwhelming gratitude we feel toward each of you? How can we help Mary to realize how much love, support and concern 100’s of people have shared with us~for her?

So many prayers~many of you fasting on her behalf~ emails~cards~beautiful flowers~stuffed animals~text messages~putting Mary’s name on prayer rolls~dinners to the hospital~milkshakes & treats for Mary~rides~Thomas care~priesthood blessings for Mary~sitting with Mary so we can take a break~lunches~care packages for us~facebook posts~phone calls~support from Oracle~helping our dogs~watering our gardens~weeding our yard~loaning us cars!~offers to help~hospital visits to us~taking care of our church callings for us~

We hear, see and read all of your kind words and sentiments. They sustain us. We are given a boost through these simple gestures. We don’t take them for granted.

Sometimes, when I have a few quiet moments, I look through my emails. I read my text messages. Tears fall. I laugh & smile too : )

With gratitude and love~

Peg and The Fam

*We realize many of you would like to see Mary! She is still on limited visitors. She is only just today beginning to take some steps. When she has had consistent sleep and managed pain, we will invite you to visit her! There will also likely be many weeks at home where you will have opportunities to help Mary fully recover through visits and therapy.                                                          

Mary Week 2~June 28, 2010

Phillip, Mary, Catherine ICU Wednesday, June 23

False Start

In all the races that Mary ran, she never had a false start. Mary had the 400m race down to a science. But she was always trying to improve and perform better. If you know track, you either love the 400 or you dread it. It’s tough. Mary learned over time that you begin the race with a strong start. Hold back during the first curve~even though everyone else is pushing ahead. Pick up your stride on the first straight away but don’t give it your full speed yet. As you head into the final curve, kick up your heels and give it 100%! This is where you can almost see the ‘pianos falling’ on the other runners’ backs. They gave it all they had, too soon! They didn’t leave enough steam for the toughest part of the race. On the final stretch kick it up even more and finish strong!

We didn’t have this last ‘run’ quite figured out yet. Mary’s ‘team’ probably pushed her too soon, too fast and she wasn’t quite ready to go into the next ‘curve.’ The most frustrating part is that we are all realizing that instead of the 400, this is actually much closer to a marathon. And don't tell Mary, but we are not even out of the starting blocks yet…

Bonjour ICU!

From the first day that Mary was out of the ICU and on a regular floor, she started to gradually go downhill. We were hopeful at first~she even had a few visitors and ate some real food. Her nurses didn’t need to make their neuro checks as often and she was off of all IVs.

Catherine stayed the first night and it was difficult. Mary struggled with pain, increasing dramatically and by late afternoon she was in agony. We had seen her in pain all week but not to this degree. We took 90-minute shifts due to pure exhaustion. Every minute with her, still, is devoted to reducing pain and agitation. We try cold, heat, ice, massage, music, reading aloud… 

On day 2, we escalated our concerns and we were heard. She had a new CT scan. She had a few mild seizures and her heart rate dropped a few times.  She was looking worse to us in every way. During that sleepless night with Phillip and Jessica, she was transferred back to the ICU where the nurses could keep a closer watch.

Sixth Sense

A characteristic that is highly sensitized for Mary during this time is her honesty and intuition. Be prepared! She will tell you exactly what she thinks without any filter or sensors on! Sometimes we prepare people and sometimes we just cross our fingers that she won’t embarrass or offend anyone! She is also able to 'read' a person within 3 minutes of them entering her room. And guess what? She is almost always right on! She can sense it by how they interact with her, and even by their simple mannerisms. By the end of a shift, we realize~wow! She was so right!

Fortunately, Mary has truly had amazing care. She is loved by all of the staff. We now can’t walk the halls without a warm greeting and concern for Mary.

We have to be careful about how we are with her too. If she senses for even a moment that we are sad, discouraged, or upset~she senses it and calls us on it.

‘Mom! What is wrong? What is wrong?

‘Oh nothing ~I just have something in my eye...’

Rules! Guards! Fools! OH MY!

Sorry to be blunt, but we all hit a wall yesterday.

20% of my stress every hour of every day in the ICU, is actually trying to simply enter the ICU. There is a desk that is similar to a ‘guard hut’ at a campus or military base. You must check in there. Then put a sticker with your patient’s room number on it. Then the volunteer (bless their aging hearts) calls the ICU nurse. Then they ask for approval for you, the mother who has been here for 8 agonizing days, to enter the gates to go be with her daughter!  “And please turn off your cell phone.”   Yeah right.

Are you feeling stress in your forehead yet?

Then after they get an answer, they slowly walk around, use their key card, the doors open, and they walk you to the room. AHHHHHHHH!

So imagine if you’ve been in her ICU room for hours and have to use the bathroom, make a call, get a drink or eat? Is it really worth that process above? Just ‘hold it’ as long as you can.

50% of my stress each day happens twice: the ‘changing of the guards.’ Shift change is between 6:30-7:30 AM and again from 6-7PM. Every day. She gets a new nurse and new CNA every shift. Sometimes, we are lucky and have a repeat of a nurse that she has loved before. Sometimes~not. I anticipate it every shift. I anxiously wait to meet them and see how she interacts with them. She will ‘tell us’ within a few minutes if it’s going to be a good shift~or not.

During one of Mary’s most difficult hours of the last 24, she couldn’t be relieved. She didn’t recognize her dad. She was in tough shape. She pushed the ‘Nurse’ button. After a few minutes, some random staff member appeared at the door, hands on hips, ‘Uh—We are in the middle of a shift change here, sooooo…’ (Don’t bother us.)

Really?  Really. Here’s a hint: don’t ever tell a 19 year old with a blood clot, AVM, and brain swelling on day 8 in the ICU, ‘We’re busy.’ Especially in front of her dad.

Reboot

Mary’s doctors are amazing. I wish it were not inappropriate, because I would hug them. Someday I will. They are saving her life. They are communicating and teaching us more everyday about what Mary has and why it is causing so much pain and what challenges lie ahead.

We can now tell you more about the brain than you may care to know. But it really does help to get inside her head! Literally.

She continues to have a gradual increase in swelling (this will peak at day 14). But no new bleeding. We just have to wait for time to pass. Doctor said today, her brain needs to sort of ‘shut down’ and hibernate and have some time to heal itself. The blood clot will shrink in about 6 weeks. The AVM will be dealt with in August with Cyber Knife radio surgery.

‘Not here. Or here, so much. But right in here.’

If you can pray for one thing for Mary, it is for her pain to decrease so that she can sleep and be more comfortable. She gets really frustrated with the pain. She says it’s like the strongest throbbing migraine you’ve ever had. 24/7. This could be long term.

It’s because her brain is swelling so much that it has shifted off center to make impossible room for that blood clot and swollen tissue. This massive pressure causes her extreme, constant pain. They can’t mask it with too strong of pain meds because they will lose the ability to check her for alertness and neuro responses~which are the only measurements they have to make sure that she is not declining.

‘I love you so much.’

Every hour we spend with Mary, we realize just how meek and humble she is. She shows gratitude to every person in her room. She compliments every person who comes close to her. She asks her doctors, ‘Now--how are you doing?’

She had difficulty sharing her feelings with others before June 19. She rarely said ‘I love you.’ Now, she tells us frequently!

Mary is a new person! But really, she’s changing all of us.

Love Always~

Peggy and The Fam

*I am very sorry but because of Mary’s discomfort and critical status, we are holding off on visitors until she is much more improved. Please text, email or send a card. We love to read all messages and hear of well wishes. None will go unnoticed.

Mary with Grandma Bigelow Thursday June 24, 7th Floor room

Kris and Mary Saturday, June 26 ICU