HOME!

Jacob got discharged on Monday! It was a weak boy sitting up in his wheelchair for the first time in a week. Monday and Tuesday, Jacob didn't move from his room. We moved in to Jacob's room, had dinners on the therapy mat with our boy.

Yesterday, Jacob ventured downstairs and was starting to sit up more throughout the day. He even cracked a joke with his music therapist. She was asking him what he thought about playing the tambourine. "It stinks". She made a big deal about it, and Jacob says: "it's funny", "it's awesome". If he's playing tricks with his music therapist, he must be feeling better!

After spending half the day at Children's today, we got confirmed that his labs match his mood. Jacob is getting over his pneumonia. Yay!

It's always exhausting to come home from the hospital. We put our lives on hold and pick our battles every time Jacob is in the hospital. When we get home, normal life has continued to go on, not caring about us taking a break from life's busyness. In the middle of adjusting to coming home, the mito community had a really rough week. Two too many children lost their battles this past week. It always put life in perspective.

Love, Maria.

A STEP BACK

Jacob got moved out of the PICU yesterday afternoon. As Jacob hits the 9th floor, we're typically almost home. Most of the things they can provide us on the regular floor, we can do at home. Joakim and I were both pretty confident Jacob would go home today, possibly Sunday morning.

After getting in a beautiful hilly bike ride this morning and having Sarah come back from her sleepover, we both headed in to the hospital to not only be greeted by Jacob and Joakim, but also two doctors in the room. That is never a good sign on a Saturday afternoon when the hospital typically feels like a ghost town.

Jacob's lactate was once again elevated this morning. They repeated it this afternoon, and it had climbed up another whole number. In addition, Jacob's heart rate had been climbing up, up, up all day. He also looked mottled.

We're hoping that the reason Jacob started to look worse is dehydration. The floor got behind on his fluids with him having a bad continuous case of diarrhea from the antibiotics. Something that is never good for our boy. His labs look fine with the exception of his lactate, which could indicate dehydration. His heart rate has slowed down as he's back on the bipap. His mottling is gone after we are now caught up on fluids.

The words "going back to the PICU" was mentioned twice...we seem to have been able to avoid that with Jacob responding to the extra fluids. And Jacob and I are very determined to stay put!

Can you see I am not good with selfies?!

Can you see I have a teenager who doesn't want to be in the picture?

I hope we will have a quiet night, and better news to report in the morning!

Enjoy the beautiful spring/summer weather this weekend!

Stay tuned, Maria.

JACOB IS ENDING THE SCHOOL YEAR IN THE PICU

This was going to be Jacob's last week of 2nd grade before summer break. Lots of fun activities planned in school, but Jacob had other plans this morning. He woke up with a heart rate of 170 (!) and lots of secretions. I knew immediately he had to be seen. In the back of my mind, I was also thinking about Sarah's cold over the weekend. Maybe it was Jacob's turn to come down with a respiratory virus? He also had been off all of last week. Something wasn't right.


Special Care Clinic was full, so we had to head straight to the Emergency Room. Jacob's lactate is quite elevated today, which would indicate sepsis. He also has pneumonia. It makes me a little sad. We have had the longest ever track record of no pneumonia. I think we're hitting two years just about now.


Over the last year, we have taken Jacob in for adrenaline insufficiency and colitis. Today, it looks like we're dealing with a mitochondrial crash. Jacob got so sick so very quickly, and he is actually spiking a fever. I can't remember when that happened last. Heart rate is still very high, and the team is monitoring his blood pressures closely. The big gun antibiotics are on board, and most medications are IV. Labs are drawn every four hours.


We hope Jacob will turn a corner quickly, so we can start enjoying the summer (despite it still being rainy & chilly here)!


Love, Maria.

SUCCESS IS NOT LINEAR

There was a time that I started believing success was linear. I had a great husband, a beautiful little girl and a second baby on the way. My career was linear. I added new responsibilities and a new title at work every year. Social life was good, and we had a new beautiful home.


Little did I know about the little dirty secret that the way to success is not linear. We work hard, hard, hard, and we might not see results right away. Despite all hard work, we don't see progress. That is the time it is so easy to give up. And then suddenly you make a big happy leap!


I am today comfortable with success not being linear. I might not always like it, but I know that is how life works for most of us. Being stubborn and persistent do help. I refuse to quit or give up. That stubbornness can be annoying to people around me, but I think it is what sometimes gets me through the tough times in life.


As I have started my bike training for Courage Classic for my third year, I have had to run "success is not linear" as a mantra. I had a bad fall going up Flagstaff. I still feel as a beginner when it comes to having my feet strapped to the pedals. Falling off your bike going up a very steep hill is not a great idea...especially not when you have to get back in the saddle again. It wasn't any longer about riding a bike, it was all about mental strength and that stubbornness to still make it to the top.


Yesterday, I don't know why I attempted another ride up Flagstaff. I knew it was going to rain all day, but I had a few hours of time to spare. I was the only one - only one - on the road up Flagstaff. That should have been a little sign to turn around. At one point when I was climbing up, I saw this beautiful deer sitting in the grass, completely still. As I got to the top, a fox got out of the woods. He looked surprised to see me in the rain. The climb up Flagstaff is always hard. It just doesn't get easier. The scary part when you have rain involved is if the tires will stick to the road. I got lucky this time. After climbing for over an hour, it was time to go downhill. I was cold, I was wet from sweat and rain. The road was slick from the rain, and the fog made me only see a few meters ahead of me at a time. I used my breaks to stay in control, and then it was that one turn when my breaks didn't take any longer. It was a split second decision to stay on the road despite no working breaks or head off the road into the woods. As I finally made it down, I couldn't feel my fingers or feet any longer. I had to crank up the heat in the car including using the seat warmer to make it home. And I made a promise to never ever go up that very steep hill in cold rainy weather again. I don't know if it was my stubbornness or persistence, but it wasn't a smart decision. Success is not linear.


Our boy is another example of success not being linear. With our boy I have to go day by day, moment by moment. Something has been off with Jacob all week, and as always there are so many possible reasons why. We have been running labs, we have been monitoring him closely, and I am still not really sure what's going on with our boy. At the same time, I am so happy he's home and enjoying his last days of school. A girl in his class gave him a Minion hat the other day, perfect in the cold spring weather. Jacob is losing both his nurses once again. It hits both Jacob and our family hard. Not knowing who will enter our lives once again, and taking care of our most precious boy. Success is not linear.


Maybe it's age. Maybe it's maturity. But tonight I am ok with knowing that success is not linear. I guess that the secret to success after all.


Love, Maria.

VOLUNTEER OF THE YEAR AWARD

We all have our reasons to volunteer. I have many, and they are all wrapped up into one reason - my son Jacob. Children's Hospital is a magnet for volunteers. They have a total of 2,500 active volunteers. Over the past two days, we all got celebrated and honored. Never ever in my journey of advocating for the hospital's children did I think I would be honored the Volunteer of the Year. The hospital has changed over the last ten years to recognize the importance of us parents and what we truly can do to make this hospital a better place for our kids.

This is what I shared over the past two days:

I am honored to be standing in front of you all tonight. All of you have given endless hours of your time and making a difference in the lives of the hospital’s children. Being a volunteer, I know you don’t just give your time, you give of your heart every time you walk through the atrium of the hospital.

The reason I am here tonight is my 9-years old son Jacob living with a Mitochondrial disease. His mitochondria in his cells are failing. When your mitochondria fail, your life is severely compromised. For Jacob it means he lives with severe epilepsy, chronic lung disease, ulcerative colitis, global developmental delays and many other diagnoses. Jacob has spent too many nights in this hospital for me to count them. He is seen in 15+ Clinics throughout the hospital, and there is never a month going by without doctor’s appointments on our schedule. In the last nine years, Children’s has become our second home. If we’re not home, we are at Children’s.

I want to bring you back to the time I started to volunteer for Children’s Hospital, the year was 2009. Jacob was struggling with uncontrolled seizures, and we had even attempted a medicine induced coma to stop the seizures, but nothing seemed to help. Jacob’s medical team didn't know if Jacob would survive the winter. We started having end of life discussions, and Jacob’s doctors were afraid Jacob would not celebrate his 4^th birthday. I was devastated. I was heartbroken. I was told to take my boy home, and wait for him to pass. I am not exactly sure how you do that, but when you have a child who needs you every hour of the day, you still find a way to get out of bed and get through the day. I think it is called resilience. That winter, I started grieving Jacob even if he was still with us. In the middle of this grief process, I had this very strong desire to find a way to stay connected with Children’s. Maybe my son was not going to need this hospital any longer, but I needed Children’s Hospital in my life. That is the time I started to explore possibilities to volunteer in the hospital. My first project was with the Special Care Clinic collaborating on a national project to improve quality of care for children with epilepsy.

One thing led to another, and over the years I have become a Parent Partner of this hospital. I get to serve as the voice of parents and making sure this is the best hospital possible for our children. Not just for Jacob, but for all of them. I've been a Parent Chair of the Family Advisory Council for the last four years. It’s a great honor to lead this group of dedicated parents and hospital leaders. I am a Board Member of the Quality & Safety Committee of the Board. I have been sitting on endless committees making sure the parent perspective is provided. My biggest passion is patient safety – keeping our kids safe while in the hospital. I am also actively involved with the Mitochondrial Clinic, and partnering with the doctors in that clinic. My latest challenge is in the research field being a co-investigator on a multi-year project promoting patient engagement at every stage of this research project. 

My volunteering started with a very strong feeling of survival  to today answering emails daily from someone at Children’s and doing something for this hospital every week. The best part is that I get to play here at Children’s, and still have my inspiration, my son Jacob, in my life. I am also fortunate to have collaborated with so many of Children’s Hospital’s staff. From all my volunteering, some true friendships and great partnerships have blossomed.

This hospital is very fortunate to have so many dedicated volunteers. What is it that drives us to come here over and over again? I think I know.

I recently read an article about grief written by Paula Stephens. The article talks about the question why as part of the grief process. Why did this happen to me? Why often offers more questions than answers and keeps the grief in the rear view mirror. The author suggests to include the word how. How explores possibilities, and shines a light into the future. This spoke to me. When I accepted my why - why I have a son living with a life threatening progressive disorder with an uncertain future, and started focusing on the how – how to make a life with my son and enjoy every moment of it. I realized Children’s has become part of my how. My how to make life better for Jacob and so many other children.

Thank you Children’s Hospital for being my how, and for letting Jacob and my family be part of your vision from board to bedside. It means the world to me. Thank you so very much.

I was so happy Jacob made it to the lunch today. I also think my sometimes critical girl was proud of her mama. She even dressed up two days in a row without any complaints.

Have a great weekend everyone,

Maria.

MOTHER'S DAY WITH A TERMINALLY ILL CHILD

You would almost think that it is not Mother's Day any longer, but Mother's week or month. There is no way to escape this Hallmark holiday. I turn on the radio in the car and a Mother's Day commercial comes on, my e-mail is spammed with suggested Mother's Day gifts, and my Facebook feed has been full of Mother's Day spam and articles. Due to my circle of friends, I have read more articles on the subject of being a special needs mom or having your child in heaven in the last week. The one article I have yet to read is to celebrate Mother's Day with a terminally ill child. My reality.

My Mother's Day is far from the world of Hallmark cards. There are still big diapers with following laundry, vest treatments with deep suctioning, and medications to give, despite media telling me my day should be filled with brunch, mimosas and spa treatments. When you have a child who needs medical care every hour of the day it doesn't matter if it's a holiday or a Monday. The stuff still needs to get done.

And this is the secret - my Mother's Day is far better than any Hallmark card. It is a very special day because I got one more Mother's Day together with both my children. When you know that your child could pass any time when hit by an illness, seizure or simply pass in his sleep, you do cherish Mother's Day in your own special way. It is a day full of deep raw gratitude. The only thing that matters is to sit and hold your child and tell him how much you love him. The day is a celebration of yet another year together. When Jacob was younger it was more of a desperate prayer that this wouldn't be my last Mother's Day with my two children. I remember sitting in a restaurant surrounded by families celebrating their moms. Joakim and Sarah had gone to get us some chocolate dipped strawberries. I had a moment with Jacob in my lap, and I only wished that we could do this again in 12 months time as my eyes teared up.

Coming up our 10th Mother's Day together, I will once again sit with my Jacob and just enjoy our day together. There is a certain gratitude when there are no guarantees if this is our last Mother's day together or not. We can hope and pray for many more to come, but reality is that we don't know. THAT is the essence of Mother's Day in our home. Simply enjoying the day with the kids and being happy to get a chance to do yet another vest treatment and another load of dirty laundry. And yes, I do get spoiled by my girl and husband, who have secretly been working together on something today.

So this is to all of you moms out there who might not have a Hallmark holiday tomorrow. Maybe your kids will be screaming, maybe your husband is not giving you a break, maybe you are separated from your kids, maybe your kids are in heaven or the dream for a baby never happened. No matter what your circumstances are - Have a very Happy Mother's Day whatever that means to you.

Love, Maria.

DELIVERING BAD NEWS

Yesterday I found myself at CU in front of a full classroom of medical students in their second year. In medical school, you will have a total of two hours on the topic "how to deliver bad news". One of my favorite attending doctors from the PICU at Children's started off by telling the students her experiences of delivering bad news, something being an integral part of her job. She did a phenomenal job, and it was refreshing to hear her perspective and how she guided the students on specific word choices to use. It all boiled down to honesty and compassion.

I went second. Nine years with Jacob have put us in the seat of receiving bad news many times. I shared times when things went really well and times when things didn't go so well. I had to travel back in time to Jacob's toughest year at age three. He battled pneumonia, pseudomonas and sepsis. A few months later, he battled status epilepticus followed by a bad case of pneumonia. Not even a medicine induced coma could make Jacob's seizures completely stop. There were many difficult loaded conversations and questions. Quality of life and end of life care were common terms around Jacob. To this day, I will never forget Dr. E's words. "I can't predict the future". In the middle of her guiding us through decisions no parents want to make for their child, she also acknowledged that she didn't know everything and she didn't know what the future would hold for Jacob. That gave me both hope and trust in her. She also made it clear that she will be by our side every step of the way, and she sure has kept her promise.

I also got to talk about Sarah, and how it is to receive bad news as a child. One of our stories that always touches the students' hearts is the time when Jacob was in the hospital for 60 days straight. We didn't know if we would be able to bring Jacob home again. It was one day at a time. It was during respiratory season, so no children including siblings could visit the hospital. We tried to have Sarah Skype with Jacob, but she wasn't really sure she saw her brother on the computer screen. I don't remember exactly how we found out that Sarah thought Jacob had died, and we simply didn't tell her. When we got this realization, we immediately talked to the PICU team to let Sarah visit with her brother. The PICU team made the exception possible. It was so important for Sarah to see her brother for herself and realize he was still with us, just very sick.

Last night, I told my girl the story from the Child Life Therapist in the Oncology department who followed my presentation. Today the medical team told this 10 year old girl she will go home on hospice after fighting cancer for five long years. Her parents and her 13 years old sister have known it for quite a while now. The 13 years old sister has no idea what to do when her sister comes home. Her parents have told her to not be sad around her sister, and pretend as if nothing has changed. At the same time as the sister is thinking about how she is going to not show her dying sister her feelings, she is also needing support from the child life therapist with her hair. Her anxiety has led to her pulling out big chunks of hair. She's still 13, and wants to look good when she goes to school hiding her grief and her bold spots of hair.  

It is not an easy class to participate in. I share stories from my heart, and it brings up many painful memories. To listen to the stories of the child life therapist and PICU attending bring tears to my eyes every single time. They always hit close to home. At the same time, it makes me thinking that maybe, maybe I make a little difference in a few med students' lives. And in a strange way, this class also fuels me. That really good feeling of having real conversations, even if they are about delivering bad news.

Have a great weekend everyone, Maria.