Sunday, February 17, 2013

WILL YOU JOIN US?

I have cheered on my friend Heather as she has been riding her bike for her daughter Samantha, and later in the memory of her. I have watched how important it is to her to ride for Children’s Hospital, the place that made it possible for her daughter to live.  Last year, her Courage Classic Team simply took off! They became one of the top riding team for Children’s Hospital. When a team raises over $50,000, they get to decide where the money will be allocated within the hospital. Summits for Samantha directly benefited the Mitochondrial Clinic and its’ patients. Heather and her team is quite the fundraising machine!

So, what has been my excuse for not riding? The unpredictability of Jacob’s day-to-day life. The feeling of never knowing when we will be thrown into a long hospital stay where everything of normalcy will be thrown to the wayside. The day-to-day busyness of simply taking care of my children, and all the other things in my life. Just the thought of finding time for a bike ride seemed impossible. The fact that I am truly scared of road biking is not to be forgotten. The fear of falling off the bike or having someone crash in to me and my bike is real.
Don’t take me wrong. I have been riding a bike on roads since I was a little kid. That’s how I transported myself as a kid back home. There were no parents driving me wherever I had to be. I jumped on my bike to get to the train station, to go to the store, and to get to my friend’s house. 
155 miles of biking over the course of 3 days in the Rocky Mountains is another story, especially when you don’t even have a bike, or a helmet for that matter. And did I mention no experience of road biking or training for something of this caliber?
But I do have a heart. I have a healthy heart that is beating for my boy Jacob. I will ride for the hospital, which makes Jacob’s life possible. I will ride for the hospital, which has saved his life several times. I will ride for the Mito Clinic, which figured out the mystery of Jacob’s mitochondrial disease. I will ride for the doctors who have become an integral part of our lives. I will ride in memory of Samantha. I will ride for all the hospital kids, who I have been honored to get to know. And I will ride for Jacob. Jacob who fights for his life every day, I will ride for him.
 

Will you join us?
Click on link to join the Summits for Samantha team:
http://www.couragetours.com/2013/team/sfs

Sincerely,
Maria

Sunday, February 10, 2013

MAKING HARD CHOICES

I was in the middle of a body pump (a weight training class) class. In between weight tracks, one of the instructors who was also taking this class, turned to me and said that I had to come to her class on Friday. She was going to turn her class into a Valentine's party! She was referring to the music she was going to use for her class. I said that I was sorry, but that I wouldn't make it. She is a hard core instructor, so no excuse is good enough to miss class. "So, why can't you come", she asked. I said that I had a conference I had to attend. "What is the conference about?" was her next question. "It is an ethics conference at Children's Hospital", I answered honestly. "Ethics Conference???" "Yes, it is about end-of-life decisions for sick children", I said. "Oh, so you're a nurse?", she said. "No, my son lives with a chronic disease", I said. I could see on her face that this was the least she had expected to hear by simply trying to get me to her class. It was time to pick up our weights again, which made a natural break in our exchange. For the rest of the class, we were focusing on our weight training, and I honestly felt that I had told her a little bit too much about my life. Maybe a little bit more than she was ready to hear at the gym.

Friday came around, and it was time for the Ethics Conference at Children's Hospital. The title of the Conference was "Making Hard Choices". I had been asked to open the conference. By now, I am ok to tell our story. Our story of taking Jacob home from the hospital after 50 days of attempting to stop seizures, a metabolic crash that got everybody to think that this was Jacob's way of saying that his body couldn't do it any longer, and two subsequent pneumonias is not new to me. The importance of the story is that end-of-life decisions should preferably not be made in the middle of an emergency. We're in a way the lucky ones who started down this path three years ago, and have had plenty of time to figure out how we want Jacob's life to look like at the end, and what that also means for the rest of our family. And when I write this, I also have to acknowledge that there are so many feelings and emotions that go into this decision-making process. How can you make the best decision for your child and take yourself out of the equation, so the decision is truly the best for your child, not necessarily for you? What the audience didn't know is that I had woken up this Friday morning with food poisoning. I started to feel sick to my stomach overnight. I knew that my opening couldn't really be told by anyone else. You simply can't tell somebody else's story when it comes to these topics, so I was determined to make it to Children's this morning - upset stomach or not.

Before lunch, it was time for me to participate in a panel discussion. On the panel, we were two parents, one GI doctor, and one doctor from the Special Care Clinic. We were presented with a case of a 4-year old girl who lived with an unknown chronic disease. In the last year, she had overall digressed and had drastically lost weight. The doctor felt that a feeding evaluation for a feeding tube was the next natural step. The doctor also knew that oral eating for this girl was very important and was equal to "quality of life". We two parents have taken different courses on our journeys. For Jacob, we have taken many interventions including a feeding tube to help our boy to live and thrive. As Jacob's disease has progressed, we have also said no to certain interventions that we didn't think were right for Jacob. The feeding tube wasn't one of them. The other dad and his family took another approach. They knew their daughter would die, and as the feeding tube came up, they decided against it. They had read and heard from other families with the same diagnosis that when you're dying, food is the least on your mind. They didn't want to interfere with the natural path of dying. The conclusion we all had, doctors and parents, is that when it comes to decisions, and hard choices, there are no right or wrong answers. You have to create your own path with your child.

The highlight of the day was my friend Heather. My dear friend Heather (http://samsmom-heathers.blogspot.com/) has lost her daughter Samantha to mitochondrial disease. This was the first time she publicly told her story about the last hours of her daughter's life and her death on a sunny Sunday morning. She told her story, and what happens when you don't have a CPR directive in place for your chronically ill child. She didn't leave out many details, she told us the beautiful and the ugly parts of a child dying in the home without a legal document. It was powerful to see Dr. E. respond to Heather's story. She told the audience that she was deeply sorry for what Heather and her family had to experience around Samantha's death. She also said that since that happened to Heather and her family, she had changed her practice. She will never leave the end-of-life discussion for a chronically ill child to a later time. She will proactively bring it up, since noone can predict the future. Heather's story is powerful by itself, but for Samantha's doctor to also take part of it, and admit that she would never ever again like to see a family have to go through what Heather had to do, was simply beautiful. I know that exchange between Heather and Dr. E. will make fundamental changes for both parents and medical staff working with chronically ill children.

When the day was over, I was content. Despite the hard topic, it had been excellent presentations, and very rewarding exchanges between parents and physicians and nurses. I felt that the conference for many was the beginning of making hard decisions. As I was driving home, still with an upset stomach from the previous night's Mongolian BBQ, I started to relax. Despite Joakim and I having been down this path of hard decisions and end-of-life care for the last three years, it is hard. It brings up a lot of emotions. It brings up a lot of feelings. By the evening, I finally started to feel better from my food poisoning, but I was exhausted and very tired.

The following morning I ran into the body pump instructor. She stopped me in my tracks, and said "hey, how was your conference?". I told her it had been really good. She was happy to hear that. That little confirmation meant a lot to me. It made me realize that most people can take much more than you think. It made me realize that she cared. It made me realize that I am never alone on this journey, even when the going gets really tough.

Love,
Maria.



Wednesday, February 6, 2013

LABS, LABS, AND MORE LABS

"Worry does not empty tomorrow of its sorrow; it empties today of its strength."

I saw that quote somewhere recently, and thought it is good reminder to all of us who have a tendency to worry. I do worry when it comes to my boy. I worry if he doesn't sleep enough, I worry if he sleeps too much. I worry if Jacob doesn't poop, I worry if Jacob poops too much. And I really worry when Jacob is sick. When I don't know if Jacob will be able to fight through. Then the worry will empty today of its strength.

Right now, I am struggling with a new worry. Since Jacob came home on December 1st, we have done loads of labs on Jacob every week. First it was due to Jacob being on a non-FDA approved drug, which can have certain known side effects. By doing weekly blood draws, we could manage and watch any possible side effects.

We should be doing monthly labs today, but we can't. Instead we're doing labs at least once a week, sometimes twice a week. Every week, there is at least something that is off and can't be explained with it simply being an error. Our biggest worry right now is Jacob's Potassium level. It is low. It has been low since Jacob started on steroids, but over the last couple of weeks it has been trending down. This is despite us giving Jacob banana puree daily, increasing his Potassium supplement 3 (!) times, and decreasing Jacob's steroids.

We're worried because the heart muscle needs potassium to beat properly and regulate blood pressure. You can't fool around with your potassium. It also worries me because I can't see anything on Jacob. I can't guess if his potassium level is low, high or within the range. Jacob's doctors across specialties are talking, trying to figure out why this is the case, and how we can get his level to stabilize. It can be the steroids, or it could be something else.

Over the last two months, I have worried about Jacob's kidney function, about his blood coagulation, about his B12 levels, about his folate, and now potassium. There is always something new popping up from the blood draws. Something we have to follow up on. Some things we need to act on, some things we need to watch. I am worried every time I get the results. I am worried what we will be dealing with next. And we can't see anything on Jacob. He looks good, his colitis and epilepsy are where we want them to be - gone (at least for now). That we can't see it on Jacob is I guess good. It means that we're catching things before Jacob starts to have symptoms.

My feeling is that we're going to have to continue with weekly blood draws for a while. Noone is willing to stop them until we get a more stable picture. And as much as I worry about the lab results, I would today feel even more scared if I didn't get my weekly check of potassium, red blood count cells, kidney function, and all that other stuff. I have never been this good at reading lab results as I am now; another thing that comes with being Jacob's mom.

Thanks,

Maria.









Saturday, February 2, 2013

CELEBRATING SEVEN YEARS OF LIFE

As we have been celebrating Jacob's 7th birthday, I have also been preparing to speak at the Ethics Conference at Children's Hospital next week. The name of the conference is Making hard decisions for clinicians and families. The focus of the conference is on end-of-life care. The conference forced me to travel back in time. It forced me to rethink and relive our discussions and decisions around end-of-life care for Jacob, thinking about how terribly sick Jacob was right before he turned four. I remember Jacob's 4th birthday as bittersweet. We were very happy to have that day with our boy, but I also remember being afraid to plan for Jacob's 4th year of life. I didn't know how much hope I had for Jacob's future.



Fast forwarding to 2013 and Jacob's 7th birthday. Jacob is home, but he is still recovering from his colitis. We're still weaning Jacob off steroids, his immune system is lower than it typically is. His labs are wacky every week. Many values are off, most likely due to Jacob being on steroids. Some are related to Jacob's colitis. The thinking was to celebrate Jacob's 7th birthday at home, just the four of us.

But his friends had other plans. They were asking when they could they come and celebrate Jacob's birthday. When was his party? And that is when it was clear - steroids or not - Jacob needed a birthday party! Having been close to loosing our boy, it might sound counterproductive to put on a big party, but for that particular reason, Jacob needed a party! When your life is fragile, you have to live it real, every day.

So, we decided to do a pizza party! Everyone made their own pizza for lunch! It was a success to put the pizzas on the grill! After lunch, it was craft time. Since we're approaching Valentine's Day, the kids were making Valentine's cards and other crafts in the colors of red and pink. We also had plenty of sugar cookies to decorate with frosting and all kinds of sprinkles. The kids were on sugar high!



 
It was then time to open presents. The kids were so excited to help Jacob open their gifts to him. Jacob got many home made cards and a very special balloon. The balloon was decorated with so many stickers, it couldn't fly anymore! It was perfect decorations for Jacob's chair no matter what.
 
 
 
 
Jacob got his first own switch toy - a puppy! Jacob activated the puppy over and over again, and the kids loved it, and cheered Jacob on every time he got the puppy to walk and bark!




We ended the party with Swedish strawberry cake. We sang for Jacob, and all the kids helped Jacob blew out his 7 candles. As we finished the party with cake and coffee, Jacob was exhausted! He fell asleep in his bean bag...but the kids were not done! They continued playing barbie for a few more hours as Jacob was in dreamland...




It was a good day. It was a really good day. Sometimes we need to remember the really hard times to know how good we have it now. A birthday party. Jacob's last birthday party was when he turned 3, and today we celebrated with friends again. I am ending the day with an immense gratitude for Jacob's seven years of life.



Much love,

Maria.

Thursday, January 31, 2013

FROM THE BIRTHDAY BOY

It's me. It is my birthday today, my 7th birthday! I decided to sleep in this morning, which Sarah didn't agree with. She was ready to open my presents before going to school, but I had other plans!

My speech therapist came ready to celebrate my birthday. She brought a whole box of new switches and toys for me to try out. I got to do something really cool today. I got to turn the radio on and off with my foot. I listened to the Spanish radio station, and was getting in the mood for Gemma's wedding! Every time the radio turned off, I activated it again with my foot switch. At the same, I got to play with my bunny by activating my hand switch. I think we have found the perfect hand switch for me, hooray! I love when I am in control! You will see who is in charge when we hook up the switch to our TV. I am not so sure sis is going to like the competition.




When sis finally got home from school, it was time to open my presents! I got many new books, some new fun clothes, lots of art supplies, and a snake clamp! We can now hook my IPad to my bed with the help of the snake clamp. I will share pictures later.



My friend Camilla came to visit me this afternoon. I enjoyed Camilla and my mom singing the Swedish birthday song for me!


Tonight, I had family cuddle time. We had taco and movie night! We watched my new movie Lady and the Tramp. Daddy was the only one who had watched it before. It was a perfect way to end my birthday!




Tomorrow, I am going to be busy preparing for my birthday party this weekend!



Love, Jacob.

Tuesday, January 22, 2013

THE TRUTH BEHIND BANANA PUREE

I had to hit the grocery store tonight. I needed a few things that couldn't wait. I rushed through the store, checked off one thing after the next on my list, and headed for the checkout as soon as I could. I was already home, all my groceries unpacked, kids in bed, and ready to sit down with a cup of tea for the first time today.

The checkout clerk brought me back to my reality by asking me where my baby was. I didn't connect the dots first, but quickly realized that he was referring to the 10 jars of baby banana puree he was scanning. 10 jars for $10. A good price to stock up on a baby favorite.

"At home", I said. I was in no mood to start telling this young man why I am stocking up on banana puree every week. That "my baby" is almost seven years old, and lives with a mitochondrial disorder. That my baby has no idea how banana puree tastes. That the only reason I am stocking up on banana puree is that it prevents diarrhea. That each jar is adding 70 calories to Jacob's diet each day. That if Jacob doesn't get his bananas on a daily basis, his potassium drops to an insane low level that prompts his doctors to call me directly on my cell phone. Tonight, I just didn't want to reveal my story behind the jars of banana puree.

My checkout clerk liked my answer, and wanted to know more. How old is your baby? I was still not interested in talking potassium and diarrhea, so the answer "1 year old" came over my lips. I surprised myself by how easily it came over my lips. The checkout clerk got even more excited, since his baby also is one year old, and to top if off loves banana puree!

I started to feel bad...but it was too late to back peddle. It was too late to tell the truth. The baby talk was in full swing! The checkout clerk didn't need any more input from me. He had his own story to share. I know there are many worse lies than what just happened at King Soopers tonight, but I did feel bad. I felt bad because I have promised myself to always stand up for Jacob. To never make any excuses. The simple truth was that I wasn't up for a mitochondrial chat tonight. It you don't know me, you feel sorry for me when I tell you about Jacob, and that is just not how I feel about my sweet boy.

But when the checkout clerk went on to praise me for being the only person who makes my own homemade pasta sauce any longer, I had to stop him. I always get my marinara sauce from a jar. In addition to the many jars of banana puree, I did have many cans of tomato sauce, tomato paste, stewed tomatoes, and kidney beans - they are all going to stew in my crockpot tomorrow. So, I told him the truth about my cocking, but I did leave out the part that the chili is going to two Mitochondrial families who are spending the week at Children's Hospital with their sick kiddos. Some conversations are just not meant for the checkout at King Soopers on a Tuesday night.

Cheers! - Maria.

Sunday, January 20, 2013

TAKING A BREAK - OUR WAY

It has been a very long time since we took a vacation as a family. I honestly don't even remember our last vacation all four of us. I am thinking it must have been Jacob's make-a-wish trip back in 2009. We have always loved the Rocky Mountains. It is amazing to have these mountains in our backyard, what a gift. Every season brings a special beauty to our mountains.

We made many trips up to the mountains with Jacob when he was little, when he still could tolerate the high altitude without seizing. One thing that was hard was that we never knew the standard of the condo we rented. There were times when we simply couldn't have Jacob roll on the floor due to it simply being too dirty. Sometimes the bedroom setup didn't work well with all of Jacob's equipment. Sometimes there was no place for Jacob to be. That took away from our get aways. We couldn't enjoy it as a family. So, many years ago we did buy a time share up in Breckenridge. We had friends who had invited us up many times, and we liked the condos. There was plenty of room for Jacob and his gear, and there was that perfect warm water pool for our boy to play in! We had found the perfect vacation spot for Jacob and the rest of us.

We were able to take Jacob up to the mountains several times when he was little. We went swimming. We strolled through town. I especially remember taking Jacob down to main street in Breckenridge in his wheel chair one time. All walking paths were covered in snow, so it was quite the exercise for me, but Jacob loved it! He was smiling as we were strolling through town. We made the bedroom into Jacob's room with feeding pump, smart vest, suction machine, oxygen tank, medication bottles, formula, and the list goes on. It took us two cars to get us all up with Jacob's gear, but it was so worth it!







As Jacob's respiratory status has declined over the years, we noticed that it was harder and harder to take Jacob up to the mountains. He didn't like the high altitude. He had trouble breathing, he had multiple seizures. Our mountain trips didn't feel like vacations anymore. We spent all time watching Jacob for seizures. We were literally scared if we would make it down to Children's from the mountains. We stopped doing things, we simply stayed in our condo watching Jacob.

After Jacob's first crash in 2009, we had to face facts. It would be very hard for the four of us to vacation again, so we simply stopped. We just stayed home. We didn't go back home to Sweden to see family anymore. We didn't go to the mountains. We never ever went far from our house, since we never knew when Jacob needed an ambulance to Children's Hospital. We stopped using our condo in Breckenridge. We turned into homebodies.

A good friend of mine, a friend who tells you the things you don't want to hear, a friend who tells you the truth, told me that we had to start taking breaks. We had to get back to taking vacations, even if it meant we did it without Jacob. I knew she was telling me something that I had to listen to.

So, we started to use our time share again. The two last summers we have also taken Sarah to Sweden. One of us going with Sarah, the other one staying back with Jacob. This last September, Joakim and I also went away on our own for three days. We're getting better!!!

This past week, we had our time share in Breckenridge. It was not an ideal week for us. Sarah had just gotten back to school, Joakim and I could not take vacation. We both had to work. But we did make it work! Sarah spent the whole week up there. Joakim and I shared the week, so we both could get our work in, and also be home with Jacob. With the help of our fabulous nurses, Joakim and I were also able to spend 2 (!) days up there together. We skied, we went out for dinner, we relaxed in the hot tub watching the stars, we spoiled Sarah rotten. It was a great week, and I came back relaxed and knowing that this is one of the keys to me keeping my energy up all year around.

When you have a child with such high needs as Jacob, he will always get the first bets in our home. Jacob has something or often multiple things that HAVE to happen every hour of the day. If something is due, Jacob is always, always going to come first. Always. For Sarah to have the full attention of one of her parents or even both of us, is a big treat to her. It is not about the skiing or swimming, it is simply spending time together and having time to talk. To give her undivided attention. She blossoms every time we go away with her. Don't take me wrong, we all miss Jacob when we are away from him. We talk about him all the time. At the end of this stay, Sarah simply called me Jacob, since she missed him so much. But it is clear that she needs this time with us, and I must say that I love it too!

It is also very good for Joakim and me to get away from the scheduled life we have at home. You can ask me any time of the day, and I know exactly what medication or what treatment or task that has to happen for Jacob. It is good once in a while to not have to draw up a medication, to not have to watch for seizures, to not have to think about if Jacob has yet pooped for the day or not. To simply let the hours flow and to not have to worry if you have forgotten a specific task or medication, and the same time knowing that your boy is in safe hands. To know that Jacob is happy and perfectly fine at home. We know we are extremely fortunate to have Jacob's nurses Gemma and Libby who we trust completely with our boy.

Don't take me wrong. If there would be any, any way that we could start getting away the four of us again, I would do it in a split second. I would load up the two cars once again, and do whatever it takes to make it work. In fact, this summer we tried to take Jacob up to the mountains again for the day. Unfortunately, Jacob started seizing the second we parked the car in the garage in Breckenridge. The mountain get away was no vacation for any of us. It was all about rescue seizure medications, and figuring out how we could keep Jacob safe.

So, we have found our way to take a break. It is not what I would like it to be, but I have started to cherish the special times I get to have with Sarah, with Joakim, and to simply taking a break!

Love,
Maria.