July 15-16, 2013

Since I deleted my last entry I am going to blend the 15th and the 16th together because they are pretty much the same.

July 15 was a great day for my family. This was the day they packed their bags, checked out of the hotel and headed home to Colorado Springs. I am not sure if I had a bag to pack, but I left Denver Hospital and headed to the Springs to an inpatient rehab facility. My family got to be in our home and I was one step closer to joining them.

We had no idea how long I would need to be in rehab. I would be doing physical and occupational therapy during my time there. It was to get me ready in hopes to be able to come home and especially to be able to be around my kids. Keep in mind 12 days ago doctors didn't even know if I would ever have normal brain function again let alone live.

At this time, I had been told most of what had happened, but I still struggled to really understand and remember it all. It seemed very fake, very surreal.

My therapists needed to make sure I was ready for home and ready to go back to work as a mom and wife. I of course don't remember most of the exercises or things we did, but I do remember sometimes wondering if they were joking or being serious with me. I knew something serious had happened, but in my head I was still Spesh. I was still the same wife, mom, daughter, runner and missionary adventurer. Being asked to walk from point A to point B, or pick objects off the ground or see if I could last walking on a treadmill for 10 minutes just seemed funny at the time. Looking back on it now I totally get it and it makes perfect sense!!!!

I remember 2 things about being there. One was having to prove that I could shower without assistance. In Denver, no one expected me to even get up and shower on my own, but one day I just got up and did it. Now I was being asked to shower while being watched with what I thought was the assumption that I would need help. Bryce said I was upset about this one.

The second one, which was like my exit test, was having to show the steps for making an egg in the kitchen. It was a real egg, real stove, pretend person eating the scrambled egg mess I made.

Being able to do my rehab in the Springs was great. My family was finally able to come home to their beds, books, toys and their own space. Cap loved visiting before and after nap time and help me with my therapy! He enjoyed all the fun equipment and different things you could balance on. Everyone liked having the family there and watching Cap play. Kids always have a way of filling a room up with joy and laughter.

What sticks out the most about being there is it was the first time I missed my family. I was finally clear headed enough to know my husband and kids were home and I couldn't be there. It hurt. I longed to be close to them. Little did I know, I would be coming home soon....

Bryce reading to the kids at home

Cap enjoying the back porch

July 14, 2013

This is July 14, 2013. I can't say that I remember this day well, but I remember it which says a lot. We had visitors this day. Our good friends from the Valley, Steve and Karen, and friends who used to live in the springs who we met 2 years ago, David and Rachel and their son Jude. I am so glad my family had friends and visitors coming and going while I was there. 

Today is the first time I remember seeing myself in a mirror. That was SO strange. My face was crooked and seemed so skinny compared to the 40 week pregnant self I had last seen in the mirror. I also remember looking down at stitches, gently touching my chest and not knowing why they were there, but just kind of shrugging my shoulders about it like "Hmmm, guess something happened.". It seemed so normal to be hanging out in the hospital room and ordering food from a menu for every meal. I felt like I had been there awhile, but I was so tired it never had the time to seem odd. 

I took my first shower by myself this day. Apparently I was supposed to wait and someone was going to help me, but I just kind of took off and got it done. This I can't say I remember but sounds like me!

I remember going outside to the garden area with my family. This wasn't the first time I had been there because my parents took me there a few days before. My mom had a great time showing me the different flowers and water fountains they had. We have always enjoyed doing this kind of thing together!  

Cap found a way to get wet in the fountain of course! I remember how hot it felt and how bright the sun seemed to shine. The dry air and sunshine made my eyes burn. But I was outside with my family. How great that was!

This would be my last day and night staying at this hospital. The next day we would pack up and head to Colorado Springs where I would stay at an inpatient rehabilitation facility. We were about to be one step closer to home!

I have several pictures over the next few months of this boy doing this!

 hanging out with Grammi, Papa, and T

Cap helping push me outside

T got a ride on the wheelchair

We are both holding our eyes!

These next 2 just crack me up. 

It is like crazy girl with 2 year old roaming the park in her robe!

I guess I am poking her eye, certainly it was an accident!

July 13, 2013

This is July 13, 2013. This was the day after my ICD surgery. It was mostly more of the same. We spent  a lot of the day in the sun room which was right down from my room. Cap had already spent a lot of time there during my stay. Even though every day was becoming the same, I was becoming more and more aware of what was going on and asking lots of questions. 

I was recovering much quicker than anyone was anticipating. After the first week of being there everyone was thankful I was alive. Approaching the end of the second week, the questions were "What had happened? Why did it happen? What was going to happen next? What was life going to look like after this?" 

Nobody knew if I was going to be able to take care of myself, let alone take care of the kids and the household. Would Bryce be able to go back to work? Was I going to need on going rehabilitation in a facility for a couple of months or someone in house with us? There were so many questions, but we had to take it one step at a time. 

I was also able to start nursing Tuolumne again during the day when she was at the hospital. Late this night I was moved from ICU to a regular hospital room. From this night forward, I can write a lot from my own memories and not second hand stories from my family. 

sun room at the hospital

bells palsy was on my left side of my face

my left eye was able to shut and 

was a constant bother for the months to come

July 12, 2013

This is July 12, 2013. This was a day full of waiting from what I understand. My surgery kept getting moved around and I ended up not going in until about midnight. I was told I was very hungry! 

I have been told bits and pieces of this long story so many times. This might sound odd, but it has been fun writing about it a day at a time. Even though I was answering questions and showing memory and comprehension at this time in ICU, I only remember a couple of things about the end of my stay in the hospital. I don't think I knew or could understand the seriousness of my condition until now. 

There are so many more layers woven into this story I would love to share. Over time I hope to do so. 

Still more to come. 

Getting to hold T without a bunch of tubes and wires.

Papa reading to Cap.

She is composing music.

First real bath besides the hospital I think

July 11,2013

This is July 11, 2013. 

I have said there were basically 4 things that sent me to the ICU last year. Each individually could be fatal, but I had a storm brewing with all 4.  

1. low potassium
2. post eclampsia
3. cardiomyopathy 
4. long QT syndrome

This is the day they figured out number 4, Long QT Syndrome. It is basically a disorder of the heart’s electrical activity, mostly likely genetic. 

They removed my feeding tube and scheduled me for surgery the next day. They would insert an implantable cardioverter defibrillator (ICD) in my chest. The ICD continually monitors my heart and if it detects a bad rhythm it will correct it. 

Bryce wrote this on the night of the 11th: 

In the last few days we have seen dramatic improvements in Spesh’s condition. She is fully responsive and alert now, she recognizes all of her family and friends who have been at her side for the last week. She carries on conversations with humor and smiles while showing deep comprehension of what has and is happening. Some blank spots in her memory are returning daily. Last night she suddenly said,"Oh, I remember when Tuolumne was born." I would like to know what kind of prayers were going up just then!

Today she walked with assistance to get a shower and then to a sun room to sit with family for awhile. What a treat. 

She is back to eating three + meals a day and her favorite is still Strawberry Milkshakes! Physically and Neurologically she is a miracle by the power of Christ through your prayers. Praise and Honor to God. 

She has a long way to go, but I keep reminding myself of the an analogy I gave her just yesterday. When we have run ultra-marathons in the past of 30 - 50 miles we didn't just show up at the start and take off. There were months of training to build up to our goal. We started off running 5 miles at a time and step by step built up our training, endurance, and strength until we could toe the line at the start of 50 mile race through the mountains. Even then we were unsure of the outcome but our souls craved the adventure that lay ahead. The 50 mile trail race I mentioned, Spesh placed second and beat me by 20 minutes!

"She is clothed with strength and dignity and laughs at the days to come." (Proverbs 31)

July 10, 2013

This was July 10, 2013. We don't have many notes about this day. Just a few pictures. More therapy. More sleep. Continued progress and strength. 

more sleeping with Tuolumne Song

Cap with his dad picking flowers to bring to me

re-learning to get from bed to chair

and this boy just looks like he is up to something!

July 9, 2013

This is July 9, 2013. This was a note from Bryce that day.

"This morning a doctor came to do a neurological exam pretty early and spesh wasn't quite awake yet. The doc asked me to wake her up to see if she recognized me. 

As soon as I said good morning spesh reached out without opening her eyes, grabbed my hand and snuggled it closed to her face. She then said "I can't wait to sleep next to you again."

The doc didn't need to see any more."

We still had no answers at this point. I did begin some physical and occupational therapy at this time. The next few day were kind of the same. Still looking for answers, slowly getting better, and continuing therapy in the ICU.

Physical Therapy

Occupational Therapy

Always Praying and Praising

Add on to July 8, 2013

My mother in law, Joyce Ball, wrote this after I posted it.

You have written a very accurate report. In ICU that night the doctor kept checking your pupils. They were not responding to his light, to his satisfaction. Although they had lowered your temperature to save organs, your temp kept falling more. When I asked the doctor why, knowing I was in medicine, he replied, "You know why. You will need to be making a decision to take her off life support in 3 days." 

What a devastating remark to hear in front of a loving husband holding a 10 day old baby. I was scared but I knew God told me to lay hands on you and command the living God in you to rise and heal you from the inside out. Once the sun came up many more began to pray, all across the world. Your healing began unnoticed by us until a few more days

July 8, 2013

I am going to back up 6 days because I left the first 24 hours out. The night of July 2 Bryce woke up to me gasping for breath and moving around oddly, but he remembers the noises I made best. Then I became non-responsive with eyes open for a minute in a half or so, long enough for Bryce to call 911 for an ambulance to come. I started waking up before the paramedics arrived, but they got there shortly afterwards.

They looked me over for a short bit and left sending us on our way to the hospital. They were thinking it was probably a seizure. Bryce called my mom to come over and stay with Cap. It was about 3am. We took Tuolumne with us. After getting to the hospital, they ran a blood test. I was a little low on Potassium. They gave me a prescription for Potassium pills and they suggested seeing a neurologist in the future.

We went home and had a quite sleepy day. We enjoyed being with my mom and Bryce's parents came down for dinner. We went to bed early that night. This is a picture from that evening.

On the night of the 3rd, I had fed Tuolumne around midnight and everything was fine. We didn't notice anything out of the ordinary. Bryce woke up around 1:30am to the same thing as the night before. I was gasping for breathes, but not a normal gasp, a last kind of dying breath. I was non-responsive, no pulse and Bryce called 911. He pulled me off the bed and started chest compressions.

The firemen arrived first. They were the ones who did the most. They pulled me into the living room and continued chest compressions. They hooked me up to the defibrillator and shocked me 3-4 times before my heart was in regular sinus rhythm. The paramedics arrived and quickly loaded me in the ambulance and took me to the hospital.

Cap stayed at home sleeping with our neighbors and landlord (we lived in a basement apartment) listening to the monitor in case he woke up. My mom came to the house and cleaned up the mess that was left from the firemen and paramedics so Cap wouldn't see it. Then she also headed to the hospital. By the time Cap woke up, Bryce's dad had gotten to our apartment to be with him.

The hospital immediately followed protocol for a cardiac arrest patient.  It was then when they began the hypothermic treatment which lowered my body temperature to about 85 degrees. My mom was playing with Cap in the waiting room.

Bryce was with his mom when the doctor came to talk to him. They told him there was no way of knowing how long I was without oxygen. If I were to wake up from this, it was very possible I would be in a vegetative state.  He was crushed but reminded by his mom that the first report is not the last report.

It is better to see the miracle of a squeezed hand, or a smile, or an "I love you" when you see where the doctors saw me going on Day 1. They didn't know if I would ever wake up let alone lead a normal life.

Now I continue to July 8, 2013. This was a big morning for everyone! I woke up more alert and started asking why I was in the hospital. This was a huge improvement as it showed I was becoming more and more alert. I also started asking everyone who came in the room for a strawberry malt!

They cut and removed all the electrodes from my head which was part of the EEG. Cedar, one of the many awesome nurses that helped take care of me, washed my hair for me in bed. I was still on seizure and heart medicine, so this kept me very groggy. It was almost like I was in a deep sleep that I couldn't quite wake up from, but I was showing signs of memory and comprehension which was great.

I finally got to see Cap this day too. Since I only remember a couple of things that month I was just told it was a little awkward. I called him Collin (my youngest brother's name) right away. I knew that wasn't right but just kept doing it. I looked a little different and we had never been apart for more than a 24 hour period at this point. 

I went from some ice chips to water to learning how to use a straw again that day:) Later on I was finally given a strawberry malt. I am sure Cap warmed up to me after that point!!! 

This was Cap's first time seeing me since July 2.

Bryce had to help me hold my head up because I was so tired and out of it still. 

I was given my strawberry malt later that day.

Cap enjoyed as much as I did!

I held my eye closed a lot in the months that followed.

It was a constant bother.