WHERE ARE WE GOING JACOB?

One of the things Jacob tells us when he is using his communication device is: "I want to go somewhere. Let me tell you where I want you to take me, ok?" He then has a list of choices he can pick from. We do know that Jacob loves leaving the house. I can't blame him. There are so many days of the year Jacob simply doesn't leave the house. I would personally go nuts. Luckily, Jacob is the more patient one of the two of us.

But sometimes Jacob and I dream together. We decide to go places that are far from the options on Jacob's talker. We talk about sitting on the beach having the waves hit our legs as I sit behind him supporting his body. We talk about going back to Europe and visiting family and places neither of us have seen in Europe. We talk about continents, countries, cities near and far. The actual destination might not really matter, if we truly could both get on a plane again.

We dream about going places as we are in the car on the way home from Children's, a place very far from beaches and world cities. We dream as we have to take the toll free road home in rush hour almost reaching the airport before we turn off to Broomfield leaving the signs of airlines behind us.

It is always a bittersweet conversation. It's great to dream and tell my boy about all the things we could see, but we both know that this is as close to the airport and getting on an airplane we will ever get. That does make me cherish the very few trips we did with Jacob in his life, three to be exact. Two trips to Orlando to go to Disney World, and one trip to Cleveland to get a second opinion for Jacob's mitochondrial disease.

But no matter if we can get on that airplane again, we will continue dreaming every time we read the signs of airlines on Pena Boulevard. And we might not hit the beach or a world city tomorrow, but we will go somewhere. Maybe to the park or our close by lake?

Have a great weekend everyone! - Maria.

MARCH MADNESS

Going in to the month of March, I knew it would be a crazy, fun month. We started out the month by having our dear friend Nadia and her girls stay with us before they were moving back to Switzerland. We made dinners together and Nadia taught me how to make the perfect cup of coffee. Jacob and Sarah got to have the girls around, reading bedside stories in Jacob’s room at night. The girls re-introduced Jacob to the movie Frozen. Sarah got to be the big sister playing Barbie with the girls and they spent hours making their own Barbie house out of Jacob’s supply boxes. This was a precious time for all of us before we had to set them off for Europe.

As Nadia and the girls left, Gemma and Gail moved in. It was time for Joakim and I to venture off to San Francisco and for me to present Children’s Hospital’s family engagement strategy from Board to bedside. The presentation was a big deal, and it went really well. At the same time, it was a much needed get away for Joakim and I. We both love San Francisco, and we had a fair amount of time to just explore the city outside of the conference. We loved the park Presidio, which we haven’t had a chance to explore before this stay.

Less than a week after we got home from San Francisco, Joakim’s parents arrived from Sweden. We got a few days together in Denver, and then it was time to pack our bags to go to Breckenridge. The grandparents, Sarah and I went up to our condo in Breckenridge at the same time as Joakim moved in with Jacob to Children’s Hospital. Jacob showed signs of adrenaline insufficiency and tested positive for the corona virus. The corona virus is a simple cold with flu symptoms and diarrhea. It definitely hit our boy hard, and he needed bi-pap to breathe during naps and as he was awake on and off throughout the day as he came home after five days in the hospital. Secretions have also been heavy at times as he is still trying to get over this virus. 

I had wonderful skiing with Sarah. I love spring skiing when you don’t need to worry about being cold. I love that Sarah and I are skiing on the same level these days, and we can plan out our day on what runs to do. One of my favorite moments was enjoying my morning coffee in the hot tub viewing the snow packed mountains.

After a few days of skiing, it was Joakim’s turn to enjoy the mountains and for me to move in to Children’s with Jacob. I exchanged my ski pants for my sweat pants. Luckily, I was able to get Jacob home in time for me to pack my bags to go to Chicago and attend the ICN (ImproveCareNow) conference. This national conference focuses on improving care for children living with IBD (Inflammatory Bowel Disease = Crohn’s and Ulcerative Colitis). Researchers, physicians, nurses, dietitians, and parents all get together to collaborate and learn about IBD. This is the best family engagement I have seen on the national level so far. Parents and physicians are actively collaborating on quality improvements, and this is ICN model in every IBD center in the country. Some are very advance in their family engagement, some are just starting on this journey. No matter where each center is on this journey, there is no one questioning engaging families in every step of the way. It was a very intense conference, but it inspired me a lot in the work I do at Children’s and gave me tons of ideas on how to further this work locally and nationally. 

Throughout all our travel and fun times with family and friends, there was a lot of stress this month. Jacob has had a rough month. His ears have bothered him since the end of February. He has been on different kinds of ear drops on and off for the last month. Add to that a nasty respiratory virus which made Jacob very tired and adrenaline insufficient requiring a hospital stay. I questioned more than once this past month, if it is worth it for us to try to have a “normal” life including travel? Not knowing if we would have nursing support until a few hours before we had to leave for San Francisco, spending the afternoon before travel in urgent care not knowing if Jacob would get hospitalized or not. Not knowing if Jacob would make it out of the hospital before I had to head to Chicago. Stress has a prize, and is it worth all the stress and detailed planning or should we settle on a less stressful life style? I think the answer came to me as I was skiing down one of my favorite runs in Breckenridge. We do need to live, even if it means we always have a plan B and plan C and always knowing that our plans can change because by the end of the day our boy comes first. March was a crazy fun month, our very own March madness. Going in to April, I am equally glad to say that there is no travel on the calendar. 

We're all ready for spring!

Love, Maria.

THE GOLDEN PUCK

Most Swedes have a love and admiration for the retired Swedish professional ice hockey player Peter Forsberg or as we call him "Foppa". He is brilliant on the ice, and at the same time carries so many qualities of a Swede. I loved watching him on the ice as he played for the Avs in Denver, I also got to interview him before the Winter Olympics in Nagano in 1998.

Our boy is now a proud owner of a Peter Forsberg signed puck. This puck was signed by Peter Forsberg himself to a man called Tony. Tony has never met Jacob. Tony is quite the bike rider. Tony and his wife lost a child at a very early age to a rare disease. They know what it means to have a sick baby, and to lose a child.

I got to know Tony as we were both taking a long spin class together. It is one of those classes you're not really committed to make it to the end until you are half way through the class. The class is three hours long...The beautiful and full of energy spin instructor Emily makes sure we never stop and pushes ourselves just a little bit further than we think we can. When we entered the last hour of the class, she went around the room and asked people to share their goal for the year. I heard a couple of people sharing goals of completing Iron Mans and other heavy duty goals. Everyone was cheering them on and riding that minute for that person. Slowly Emily made it up to my bike as I was riding in the back row. She commented on the fact that I am Swedish. As I was sharing my goal of riding the Courage Classic for my son who lives with a mitochondrial disease, the whole room started to cheer and clapping their hands. The power of riding for someone who can't is pretty darn powerful. I was pretty psyched by the support.

As we completed the ride, Tony came up to me. He was wondering if Jacob loves ice hockey. I told him that Jacob has watched many hockey games on the TV with his dad. He was wondering if Jacob likes Peter Forsberg. I told him our whole family admires "Foppa" very much. Tony told me about his lost child with tears in his eyes, and how he wanted my Jacob to have his very special Peter Forsberg signed puck that he had gotten from Peter Forsberg himself.

There are so many emotions around this puck. It's not so much the puck itself, but the fact what this man decided to do for Jacob who he has yet to meet. It is so much kindness in this puck. There are people like Tony and his beautiful wife Tamara who make this world a better place. For now, Jacob's Peter Forsberg puck has a special place on his book shelf in his room.

After a frustrating Saturday in the hospital with very little progress, Jacob is starting to perk up and respond to the steroids. We are so happy to see Jacob moving in the right direction, and hopefully we soon can start talking about coming home again, so Jacob can enjoy his spring break a little.

Love, Maria.

I HAVE DREADED THIS DAY

I have dreaded the Friday before spring break for a while now. Last year on this day, we didn't know if Jacob would make it. He was diagnosed with bacterial translocation of his gut due to having a severe allergic reaction to protein. This was also the first time Jacob showed us signs of adrenaline insufficiency. There was not much of a spring break last year. I spent most of the week in the ICU with Jacob while Sarah and Joakim were skiing with the kids' cousins visiting from Sweden. When I finally made it up to ski for a day, Jacob went into adrenaline shock at home and I barely made it home to change out of my ski clothes to once again rush Jacob to the ED and PICU. A very scary day and spring break.


I am typically not superstitious, but as we were coming up on this day again, I saw way too many familiarities with last year. We had once again Joakim's family in town, we had once again a vacation planned in Breckenridge together with an elaborate nursing schedule for Jacob, we even had a doctor's visit with the same doctor on the same Friday! It definitely got me to think about last year, and how things would pan out this year. To the picture we have to add that Jacob hasn't had a great week. He has struggled with ear infections for the last month. They move from ear to ear, and Jacob was finally put on steroid ear drops on Monday. Jacob has also been extremely tired and lethargic this past week. Each day he has been sleeping more, being awake less. There are so many reasons for Jacob's body to be tired, but it's just not our boy's pattern. He sure enjoys a nap, but never sleeps for hours on ends. I knew something was wrong. We started to stress dose Jacob yesterday afternoon, and called Dr. E to get a plan for labs and going to Special Care Clinic.


As soon as I heard they wanted to do IV steroids, I knew we were getting admitted. We need to get him stable again before he can come home, and we need a good steroid plan. We have known for almost a year that Jacob will be dependent on steroids for the rest of his life. We have tried so very hard to wean him off, but after him going into adrenaline shock last year, everyone concluded that being steroid dependent is safer than going into adrenaline shock. Once again, I think we see a "new" Jacob. We are faced with a Jacob who is needing even more steroids to go through his regular day. This is not so much about colitis any longer, this has now turned into a severe adrenaline insufficiency.


Dad and Jacob are hanging at Children's tonight. The plan was for them to hang at home this weekend while I took Sarah and the grandparents up to Breckenridge. We made it up here tonight, and the plan is for Sarah and I to ski tomorrow. I am going to try really hard to stay in the moment and enjoy that day with her. I know our boy is in good hands with dad. We're hoping the steroids can be figured out quickly, and that we all can get to enjoy this spring break just a little bit.


Love, Maria.

HOW LUCKY AM I TO HAVE SOMETHING THAT MAKES SAYING GOODBYE SO HARD - Winnie the Pooh

If you have been reading Jacob's blog for the last couple of years, you know of Jacob's best friends Selina and Leandra. I was tonight searching for the blog post about Selina and Leandra coming over to play with Jacob for the first time. I searched for the blog post in vain, but when I searched for the name "Selina" I got 8 (!) pages of hits on Jacob's blog. It is never about quantity in Jacob's life, it's always about quality of life, and every single moment with Selina and Leandra were precious special moments.

These two girls proved to me that no special needs will stop friendships where friendships are supposed to happen. I remember thinking that Selina would be more interested in Sarah's barbies than playing with Jacob, and I was so wrong. She found a way to play with Sarah's barbies with Jacob by having Jacob pick between two barbie outfits using his eye gaze and her dressing each barbie based on Jacob's liking. They did this for hours...I think Jacob surprised Selina that first time too. Selina hadn't realized that Jacob always uses a wheelchair, not just in school. After she played with Jacob, all her dolls were in wheelchairs for days, processing the fact that her friend needed a wheelchair wherever he goes.

Selina and Alyssa never got enough of Jacob when they went to preschool Bal Swan together. Jacob was the perfect friend, always ready for a dress up party or any game. Jacob went camping with the girls, Jacob was a cowboy, Jacob was a dragon - whatever the dress up party of the day was. When Jacob had broken his arm, Selina's bear also had a broken arm.

Over the years, Selina and Leandra have made Jacob's life so special by going to the zoo, hanging at the pool, going for bike rides, going for walks, endless play dates in our home when Jacob wasn't able to leave the house, endless craft days. Selina made sure Jacob never missed a pumpkin patch. She dragged Jacob through endless corn mazes stroller and all...They have shared their birthdays and holidays from Valentine's Day to Christmas.

When Jacob had extended hospital stays, I could count on Selina and Leandra to visit him. I will never forget the time the girls and Jacob filled his bed with paint as the EEG camera was recording Jacob's brain! What a very special day.

And in the middle of Jacob finding true friendship, I found a soul sister in the girls' mom. Nadia has a very big heart with strong ethics. At the same time, a laugh or a "sh*t" is never far from her which makes her wonderful to be around. She is always true to herself and others and what she believes in. We found common values by both being from Europe, and at the same time finding a home in the US. We both love coffee, and we believe strongly that coffee makes people happier and unstoppable!

Tonight, I am sad. I am sad to see Nadia and her girls leave. I am sad because I will miss them so very much. The sadness is also so raw because I just don't know if Jacob will ever find this kind of friendship again. I hope time will prove me wrong, but it's just not as easy to make friends when you're Jacob and you're home schooled for months of the year. In the middle of sadness, I do know that this is the right decision for Nadia and her family, and how lucky are we to have something that makes saying goodbye so hard? Winnie the Pooh is so wise.

Love, Maria.

THE SNOWBALL EFFECT

I have sometimes talked about the snowball effect when Jacob is getting sick, not knowing where the snowball will finally land.

I have been involved with Children’s Colorado for the last eight years, always trying to make the hospital a better place for our children. Right now, I feel I am the snowball going down the hill, not knowing where it will take me.

This week the snowball took me to San Francisco. Yesterday, I got to present about “Partnering with Parents to Reduce Preventable Harm - from Board to Bedside” together with the hospital’s Chief Quality Officer and Director of Family Experience at the Children’s Hospital Association’s conference. The conference was located in San Francisco, one of my favorite cities. I was also able to bring Joakim along, which was no small feat. The 24 hours nursing team for Jacob (in order for us to leave) has fell through multiple times since we started to plan this trip in December. We didn’t have the final confirmation from the last nurse until 6 pm Saturday evening (leaving the following morning). I also had to take Jacob to Urgent Care Saturday afternoon due to his ears still not looking clear from his double-sided ear infection. When I finally sat on the plane Sunday morning, I needed a few deep yoga breaths to get me in the right mode.

It was great to stand in front of an audience of Pediatricians from all over the country, and talk about our lessons learned in involving Parent Partners from Board to Bedside. I think the fact that Children’s actually flew me out to this conference demonstrated that the hospital “walks the talk”. I talked about our most recent White Board project where we are now engaging with families in each hospital room. On the White Board, each family can see what hospital acquired conditions (falls, right drug, pressure ulcers, hand washing etc.) their child is at risk for. With the White Board comes a set of cards explaining what the families can expect hospital staff to do to prevent harm, and what families can do to partner with hospital staff in making sure their child is safe at all times. This project was driven by a group of parents including myself, and with the thinking that the hospital can’t get to 0 patient safety errors without engaging parents. We got overwhelmingly positive feedback on our presentation throughout the conference, and it felt really good to have shared our successes at Children’s.

Outside of the conference, Joakim and I got to catch up on some alone adult time and exploring San Francisco. This was our 4^th time in the city, but the first time we made it to Presidio. We both loved this park. We ate great food and got to sleep a little bit more than normal. It was an awesome four days away from home, especially because Jacob did well and our nurses rocked!

Back to the snowball effect, tomorrow I am participating in a lunch meeting for a Quality Award the hospital is trying to achieve talking about family engagement throughout the hospital. Through the national work that I do through PEDSnet, I am the co-lead of a research project creating a Portal for involving parents in their own data linkage across hospitals in this country. I am presenting the same Presentation I just did in San Francisco at two other conferences in Denver this year. In two weeks, I get to go to Chicago and attend the national ImproveCareNow conference with focus on IBD (Inflammatory Bowel Disease). I am going as the PEDSnet parent, and I am hoping to bring back information both to PEDSnet and to learn a few more things that can benefit Jacob and his tummy.

It has been a really busy year with the additional work at Children’s, but it’s all very rewarding work. For now, I will follow the snowball wherever it will take me.

Stay tuned, Maria. 

ETHICS AND GENETICS

On Friday, it was time for Children’s Colorado’s Ethics Conference. A conference where clinicians and parents come together to discuss topics relevant to both parties. This year’s conference was focused on genetics and ethics: a family perspective  I have had the pleasure to get to know the man who is heading up the Ethics team at Children’s over the past years. We have partnered on projects and often seem to share similar viewpoints as we have been sitting on the same committees and projects throughout the years. He is a physician by profession, but he never seize to amaze me with the brilliant questions he brings to the table.

The morning started out by setting the foundation for genetics and genetic testing. We got to listen to topics around newborn screening and ethics around that. We got to hear about how to tell your child about a genetic condition, and different perspectives around that. We got to discuss the massive genetic information available to us today, but not always having the knowledge on how to interpret the information yet. How much information is good and how do we use that information ethically?

Over the lunch hour, it was time for the Grand Rounds Panel. I had been asked to sit on the panel with two other parents and three physicians. Three large conference rooms were filled with hundreds of clinicians and parents listening to the Grand Rounds Panel. We all got to give our perspective on genetics and genetic testing. I got to talk about the long genetic journey we have been on with Jacob. It took 9 years to publish Jacob’s extremely rare gene mutation in the Journal of Medical Genetics. I talked about what it meant for us as a family to get a firm genetic diagnosis despite the diagnosis not leading to a cure for Jacob. The most important piece is that the disease stops with him. Sarah didn’t inherit the Jacob Gene. She will not carry this disease forward to her children. I talked about what I have witnessed in working with families through Miracles for Mito.

The physicians’ stories demonstrated that many of them struggle with what is ethically right. Dr. E’s story from many years back was moving.  She is still pondering if she should have done something differently, and how can she learn from that case in taking care of her patients today.

The ethical dilemma that submerged from the Grand Rounds was around how far do you take genetic testing. If one sibling is sick, do you test everyone in the family even if the risk for the disease is not high? What about if everyone in the family in another State gets this information as part of their newborn screening, but here in Colorado the mom of a dying boy doesn’t get to find out if her healthy daughter is a carrier of the brother's fatal disease? It got emotional. It became personal. I wasn't certain until this discussion started if I  knew how important it was for me that we were able to test Sarah for Jacob’s gene mutation with no questions asked. And how extremely important that test result was to us as a family. Sarah herself couldn’t care less when we told her, and to this day she doesn’t think about that. Right now boys and babies are not on her horizon. One day, she will be happy to know. That is my strong belief.

It was an impactful panel and I left feeling exhausted but alive. I felt I had made a difference, maybe even shifted a few opinions in the room.

I am now on to sharing family engagement strategies to reduce Preventable Harm in San Francisco with Children’s Colorado’s Chief Quality Officer and Director of Family Experience. We will attend a large conference for all Children’s Hospitals in the country. I am excited, and yes a little nervous.

Love, Maria.