SWEET JACOB 01312006 - 06192016

On this Father's Day, Jacob lost his battle to mitochondrial disease. We love him beyond words, and feel we are the luckiest family who got to have him in our lives for 10 beautiful years. In hearing and sharing stories from Jacob's inner circle yesterday, it gives me peace that Jacob had such a rich life, each day filled with love. Please keep us in your thoughts and prayers (especially Sarah) since it feels as we're learning to walk again, and remember Jacob with us. Talk about him, share him with us, we will never stop loving and remembering our very special boy.

I will post memorial service details as soon as we have them. I am hoping to find my writing soon again. This weekend was so very, very sad for all of us, but also moments of pure beauty and love.

Sincere love from all of us,

Sarah, Joakim & Maria.

I AM LIVING THAT DREAM

Lately, I feel I am living that dream where you try to get to a specific place, and you never make it to the destination. Every time you're getting close, something is getting in the way. I feel I am living that dream lately.

Jacob was home for six days. We finally left the hospital a week ago, and was hoping Jacob would get plenty of time to recover at home. It's summer time, which is typically an easier time for our boy. The six days at home were not without excitement. Managing diuretics with blood draws, balancing edema and dehydration, meant we talked to the kidney center every day including the weekend. I definitely felt we were on new territory.

We had a good weekend despite kidney problems. We were able to catch up on some yard work, Sarah made sure to have a series of sleepovers, the kids got to hang out together at home, and best of all, Jacob got to be in the pool! He also got see his good friend Brittany.

 

 

 

 

Monday, Jacob had a hard day. He had a high heart rate most of the day, and in the afternoon we had to treat a seizure. His kidney doc was concerned he was getting dehydrated. Tuesday was a repeat of Monday, just a little worse. Jacob just didn't look great Tuesday evening. We had plans to go in to Special Care today, but I just didn't feel comfortable to possibly have a dehydrated kid needing IV fluids at home for another 18 hours before he would be seen.

 

As Sarah and Joakim were at Sarah's beach volleyball tournament, Jacob and I headed to the ER. I had called the kidney center ahead of time, hoping we maybe could just do a bolus of IV fluids and then head home. Well, his lactate was through the roof, so there was no word about going home, instead more tests were ordered, IV antibiotics started, and a bed ordered in the PICU.

 

This morning before I was heading in again, Special Care called and said that he had a possible intestinal ischemia! I wasn't surprised that something was going on with Jacob's GI tract, since this already started during our last hospital stay, but ischemia?! So very scary.

 

The PICU team is feeling Jacob looks a little too good for having ischemia. His vitals are stable, and his lactate improved overnight. Today has been a "wait and see" day in the fish bowl. The test to determine an ischemia is not taking lightly, since it can impact his already overworked kidneys. His belly is big as a balloon, and looks so painful. He is also having more edema tonight. I am curious to see what tomorrow will bring. Luckily, we have our German attending who actually knows and understands mitochondrial disease pretty well.

 

A dear friend texted me this morning and said that I must be so worried for Jacob. The feeling I am walking around with is numbness. We're going on a month of this emotional rollercoaster watching our boy fight so hard for his life. It's hard to see an end in sight or the light at the end of the tunnel. Jacob's medical issues are piling on each other, and creative minds are trying to figure out how to balance it all. I feel terrible for Sarah's summer break turning into us living at Children's. I can see that balancing work, regular life commitments, and a very sick child are weighing on both Joakim and my shoulders, a little heavier each week. When did we last socialize with our friends outside of the hospital walls? When did I cook a meal? When did I do something spontaneously with Sarah?

 

What keeps us going is our boy. That Swedish resiliency and stubbornness. If we can get him home and to a better place medically, it's all worth it. We are holding on to hope that we can wake up from this dream, and found ourselves at our destination.

 

Love, Maria.

 

 



 

 

LIFE RIGHT NOW

We're home. We all take a big sigh of relief. We can all go back to normal. Let's wait a second. Life with Jacob is not normal. It's unpredictable. It's intense. It's ever changing.

I have my moments when I look at myself from the outside, and I stop myself in my tracks. Today, I made it up to Ward on my bike. As the other bikers were refueling and talking about where they would ride next, I was trouble shooting Jacob's edema from the top of Ward. Should we do another dose of diuretics today? Should we call the doctor on call to discuss yet another plan for the weekend? What was his weight today? How much had he peed? Pooped? My brain thinking about what I might have missed, what I need to do to stay a step ahead of my boy.

And then I have moments like tonight with Jacob. Jacob had taken a late nap, and was wide awake at bed time. He had no interest in sleeping despite seizure medications on board. We read books and sang songs, and Jacob vocalized and gave out his big sighs of feeling well. It's such a simple moment, a parent putting their child to bed, something most parents simply take for granted. In our home it's a sacred moment when all stars align. No high heart rate, no stress to Jacob's body. Just Swedish children's songs and happy books.

I felt a little lost taking Jacob home this time. I felt a little overwhelmed with his care at home. We're getting once again best friends with a new specialty, nephrology. Being best friends with the kidney center is not something you want to be, but it's where we are today. It's a lot at stake to manage Jacob's fluid status where messing with his electrolytes can be life threatening and make our boy very sick. Blood draws, daily weight checks, measuring all urine and stool output.

But living in the hospital is no life. We got really close with our medical intern this time. She saw my anxiety rise as we were talking in the morning of discharge. Wasn't Jacob's stomach a little more distended this morning? Jacob had a little more secretions this morning. What about if Jacob's oxygen would drop at home? This is from the mom who has taken her child home over and over again. I just felt nervous about how Jacob would do at home this time. The intern convinced me that there was nothing they would do in the hospital, I couldn't do at home. Jacob was ready to go home, and we're still home after four days.

We made a change as we went home. We signed up with Denver Hospice. We quit Children's palliative/hospice program during this hospital stay. It probably warrants its' own blog post, but it was never a good fit for us. We are not changing the course of Jacob's care right now, but we want to make sure we have someone on our side in case Jacob suddenly get worse or God forbid an unexpected death in our home. We want to find a partner before we are there. We want to find a partner who shares our views of quality of life for Jacob.

It's emotional. It's not something you want to have in place for your child. It's overwhelming to have multiple people call every day to check on Jacob and wanting to come to our house. I am told over and over again, I am in charge. This week, I felt far away from being in charge. I felt I was drawn in multiple directions of work deadlines, new day nurse in training, barely any night nurse coverage, and people wanting to have serious discussions with me about Jacob's health, life and goals. It drains you emotionally.

The best way to describe life right now is that I ended up on another planet. A planet that is far from normal life, but a planet I so desperately try to keep in my life. A planet full of love and difficult decisions, a planet hoping that Jacob will prove everyone wrong one more time. Managing that planet with normal life is exhausting, but also a way of surviving. You need both. It's just hard to shift gears when you have a slightly squeaky wheel.

So to the planning person I am, this is the time to realize I am not always in charge. I can't or won't plan. I will have to go with the flow, and see where it takes us next. One step at a time into the unknown.

Love, Maria.

HOME SWEET HOME!

After a challenging three weeks in the hospital, we got to go home today!

Mrs, Pries came to take Jacob home! She said summer school is starting, so if I have to kidnap you out of the hospital, I will!

A last cuddle before heading out!

Sis volunteering and wanting Jacob to put his hand print on the mason jar!

Hand print success!

Mrs. Pries not leaving Jacob's side!

We made it through another challenging hospital stay with our boy!

There is so much to update on, but I will leave that for another night. Tonight, I am just sitting out in the backyard with my glass of wine seizing the moment of having all four of us under the same roof again.

Love, Maria.

BACK TO SQUARE ONE

Three Saturdays I go, we got a rude awakening that Jacob was getting really sick. That led to seven days in the PICU with a very sick boy. It was an emotionally draining ICU stay with slow, slow progress. I felt as if I were on an emotional roller coaster 24/7 as I was trying to care for my boy, and juggling all other balls in life at the same time.

Last Saturday, I was texting nurse Gemma in the morning as she was asking how our boy was doing. Tears were falling as I was telling her that I didn't know if he would make it through this time. Jacob just wanted to sleep. As Gemma and I were texting back and forth, Joakim texted me to let me know one of his seizure medications was extremely elevated in his blood and could explain his sleepiness. Joakim and I were not sure that was the cause, but we were holding on to hope. And are we happy we were holding on to hope. As his Phenobarbital got back to Jacob's therapeutic level, we got our boy back. It has been slow progress and a lot to figure out with Jacob's fluid and nutritional status to get him back to baseline. I'm so impressed with our intern this time. She's thinking about everything, and is such a passionate person. I can see she loves caring for our boy, and she just soaks in all that new learning. Caring for Jacob never follows the text book.

Yesterday, Jacob looked so good. He was using his talker for the first time in weeks, and as I came in to the room, Jacob said: "hi mom". I also asked him if he wanted to go home, and he said: "yes, yes, yes".

Today, we were going to watch Jacob a last day before getting discharged in the morning. Prescriptions were all filled, all specialties involved were consulted, and a going home  plan had been agreed upon.

Unfortunately, Jacob had other plans. Our kid has come down with a big nasty infection. All lab results are through the roof. As the doctors are trying to find the source of his infection, they have already started Jacob on IV fluids and the big gun IV antibiotics. I feel we just lost two weeks, and are starting right back where we were three Saturdays ago. Everything they are doing tonight, they did in the ER 14 days ago. The only good thing is that he has not needed any extra respiratory support. He has been good all day on room air or nasal cannula.

I'm exhaused, sleep deprived, and worried. How we all had looked forward to be home together tomorrow instead of once again trying to figure out who should be where when for yet another week. And then there is our brave boy. He just turned a corner in the last couple of days, and is tonight back to square one again. In the middle of everything, I just sincerely hope we can quickly figure out what's going on, and help Jacob to feel better.

Tonight, I am hoping for answers and a little bit of sleep.

Love, Maria.

SARAH AND CHILDREN'S HOSPITAL

Children's Hospital stole my heart long time ago. I know it sounds weird. How can you love a hospital?! Being in the middle of a long challenging hospital stay, there is nothing I want to do more than bringing my boy home again. I do not want to sleep on this hard tiny couch with alarms beeping one more night, and deal with nurses and respiratory therapists throughout the night. What makes it bearable here are the people. They are the heart of this hospital. It's not just the doctors and nurses. It's everyone from the volunteer greeting you at the entrance to the person coming by asking if we have any empty trays. As Sarah and I had picked up some food in the cafeteria this evening, a dad I have worked with for years gave me a big bear hug as he was heading out with his son. We caught up on life, and we both know why we give our free time to this place. Encounters like this make the day a little better in the middle of worries, stress and hardships.

Today, Sarah started her own relationship with Children's. This spring, she found out you can start volunteering at age 13. Sarah immediately jumped on this, and together with two of her close friends, they went through the rigorous recruitment process to become volunteers at Children's. They filled out applications, got background checked, collected their own references, got their blood drawn, and attended the volunteer training. Having a teenager, there are many things I have to prompt and remind Sarah to do. This particular project, she owned completely from start to finish.

Today, Sarah did her first shift as a volunteer. She figured out what she could wear. She emailed the scheduler to confirm her hours, and then I dropped her off at the volunteer office.

Sarah was pumped when she was done. She got to give out the daily volunteer flyers. She had passed Jacob's room, but since he is in isolation, he didn't get a flyer. She got to help out with children in the speech and audiology department who were here for speech evaluations. She felt a little overwhelmed after taking multiple kids to the bathroom, but figured it out in the end. She ended the day in the creative play area (daycare for siblings). She helped with a little toddler who didn't want to leave her side, and decided to lick her whole volunteer badge! She wanted to sanitize it right away when she came to see Jacob, so she wouldn't spread any germs. This girl has been in the hospital a few rounds...

I know life with Jacob isn't always easy for her. She has spent numerous weekends and holidays here. She navigates a hospital room like a seasoned nurse. She knows where the kitchen is and what food she can find in the fridge. She knows the whole coffee menu, and everyone's coffee order in the family. She knows the gift shop and cafeteria a little too well. No need to look on the menu for what she wants to order. Many of Jacob's doctors and nurses know Sarah, and love when she comes to visit her brother.

I was so proud of my Sarah today. She started her own relationship with Children's. She isn't just Jacob's sister, she is Sarah. 

The girls at the annual volunteer dinner.

And a little Jacob update: Jacob is back on room air today, which is a big step in the right direction. No more bipap or oxygen during the day. Jacob finally started to pee on his own after having had a foley in since we came. He still needs diuretics to help him pee. Jacob was a little more sleepy today again, and he is not yet feeling completely himself. We still haven't discussed discharge, but hoping Jacob will continue to slowly improve. I'm ok to go slow as long as we continue to move in the right direction.

Thanks again for all the love, support, visits, messages, coffee & meals. It fills our hearts.

Love from the 9th floor, Maria.

HOLDING ON TO HOPE

First of all, THANK YOU, everyone for visiting with us, bringing us food and chocolate, mowing our lawn, opening your homes for Sarah, checking in with us at all hours of the day. As challenging as this last week has been for all four of us, we always feel your love and support.

After one week, Jacob's edema is better but not back to baseline. He's still receiving lasix every day to help get the fluids off his body. The fluids in his lungs still make it challenging for him to breathe. He passed his high flow nasal cannula trials yesterday, which is a good thing. He still has oxygen desaturations with repositions and deep suctioning.

Jacob also got moved out of the ICU yesterday, and he is now on the 9th floor. That always feels like a good step in the right direction.

The biggest thing is that Jacob is so very sleepy. He is awake for short periods of time during the day. The big worry being that Jacob's overall disease has progressed. On Friday, we decided to schedule a brain MRI for Monday and give him the weekend to improve. I was not very hopeful, and thoughts of this being the end for Jacob was on my mind constantly. It eats the inside of my body and soul.

Out of the blue, we got some hope yesterday morning. Jacob is on a seizure medication that can make you very sleepy. The level of this medication is extremely high in his blood right now, and this in itself can explain his sleepiness. This morning, the level of this medication is even higher than yesterday. You and I would not be breathing on our own, if we had this level in our blood. Jacob being Jacob is sleepy, but is hanging on with the support of his bipap and his high flow nasal cannula.

With the news of his elevated medication, we are holding off on the brain MRI tomorrow. We want to see how Jacob looks when this medication has stabilized in his blood. Our hope and prayers are that he will then start to look his normal Jacob again. We're holding on to hope.

Jacob did this exact thing a few years back. We never got an explanation on why this medication suddenly was so high in his blood to the point of sedating Jacob. The one theory we got from his metabolic doctor is that his liver was busy metabolizing other things, and therefore was holding on to this medication rather than metabolizing it correctly.

I don't think Jacob is out of the woods just yet, but we will continue to fight side by side with Jacob until he tells us otherwise. He is currently watching his Minions movie for the hundreds time on nasal cannula, and we can only hope that Jacob will start to feel better.

We're all exhausted from this being a very challenging stay for Jacob with questions being asked that we were hoping we wouldn't have to face for our boy just now. On this beautiful Sunday morning, I am still holding on to hope.

Much love,
Maria.