ON DAY 5 IN THE PICU

Jacob was hit hard last week with pneumonia, an ileus, and an elbow joint effusion (which they first thought was a fracture). He didn't look well. He was in pain. I knew Jacob was close to the edge of what his body can tolerate. 

And then the edema came. It came with the IV fluids we gave him Thursday thru Friday for his ileus. Jacob's body couldn't absorb the fluids properly, and instead the fluids started to leak out in his body. This was partly due to Jacob's albumin being extremely low. For Jacob, it caused major swelling. Not just visible swelling, but also fluids in his lungs and other places. Sunday afternoon, it was time to pack the bags and take Jacob to the ER. They diagnosed Jacob with sepsis, and the big gun IV antibiotics were once again on board. Labs and other tests were ordered. I knew that PICU was the only safe place for Jacob this time, so we were all on board to admit him.

We're tonight on our 5th day in the PICU. His edema has improved, but today the x-ray is showing more fluids in his lungs. This would explain the random oxygen desaturations he has had on both nasal cannula and bipap in the last days. Everyone was concerned about his elbow joint effusion, and was wondering if his elbow joint was septic. Tests and x-rays actually show that the swelling in the elbow is gone. His tibia bone is also nicely healing. No fractures and no septic joint are all good news, but why is Jacob still so sleepy? He has also been running a low temperature.

We're all worried. Jacob's medical team is scratching their heads, wondering if they are missing something. Dr. E. is coming by every day to check on our boy. We will give Jacob time to get his extra fluids off, and see if that will make him look better. In the back of our minds, we're all worried that Jacob's disease has progressed. We know it can happen any time. Mito never takes a break. We know that if we can't find any answers in the coming days, we will have to look at his brain. To see if something has changed. I dread it so much. I dread it because of what we went through last summer. It gave me so much grief. I know it will not come with any easy decisions. At the same time, we want to know what's going on with Jacob. We owe that to Jacob.

In the middle of a very difficult hospital stay, Sarah graduated from middle school. I can't believe we have a High Schooler in the fall! I hate that this is all happening as Sarah is just about to start her summer adventures she has so been looking forward to. 

We appreciate all the support and love for our boy so very much.

Love, Maria.

AND THE FIGHT GOES ON

Joakim and I escaped for 72 hours this week. We had been ready to cancel the trip more than one time. Should we truly leave when Jacob wasn't feeling 100%? My neighbor talked me out of it in the grocery store Saturday afternoon. We needed to go, we needed a break! There is never a perfect time to leave Jacob.

Las Vegas did give us a break. We got to sleep. Ironically, sleep is the first thing that comes to mind, and we went to the city that never sleeps. We relaxed, we saw a fantastic Cirque du Soleil show, we ate and drank well. We discovered In-N-Out Burger. Most importantly, we had time to just be husband and wife. It's a great feeling to simply have fun, laugh, and have great conversations with your hubby instead of discussing the new formula mix for continuous feed, the medication schedule for the night, and how much pee and poop we had out for the day.

As we were sitting in the airport going home, I browsed my phone and came across this article:

http://themighty.com/2016/05/parenting-a-child-with-life-limiting-illness/

As with anything in life, not everything is applicable to your situation. There are endless articles and blogs on the theme special needs children and parenting. This piece did speak to my heart on so many levels. I realized how important it is to make time for your marriage,if you do want it to stick. These short getaways are crucial to reconnect, but also for myself to lower my guard a little when it comes to our boy. Don't take me wrong. Jacob was on our mind a large majority of the 72 hours. I don't think I can count the number of phone calls to coordinate blood draws, antibiotics, picking up medications, scheduling doctor's appointments, and trying to assess our son over the phone at the same time as we were walking down the Strip. Tuesday, I didn't truly relax until Jacob's night nurse texted me to say that he was sleeping soundly and his heart rate had finally come down from being elevated all day long. As I was taking yet another call in the casino, I was wondering what other people discuss on the phone while they are gambling?! I was going for a run only to be interrupted by Dr. E giving me a rundown of Jacob's lab results. I could hear on her that Vegas is not her vacation destination of choice :-

Despite tired souls, we do fight That was truly put to the test the minute we got back from our mini vacation. Jacob still didn't look great Thursday morning. Joakim decided to take Jacob to Special Care as I went in to work. We were looking for a source of pain, but didn't know exactly what we were looking for. X-rays were ordered for chest, abdomen and Jacob's left elbow since it looked swollen. Bingo! Something was found on each x-ray. Jacob's x-ray hasn't improved since our PICU stay earlier this month. A new antibiotics was ordered to treat his lungs. An ileus (blockage of the intestines) was found. Gut rest was ordered, and IV fluids for 24 hours. The x-ray of the elbow showed elbow joint effusion. In layman's terms, we're talking a fracture that is not visible on x-ray.
IV fluids at home is a blessing, but who had any idea how difficult it would be to get that pump going? Luckily, we have a nursing agency with great support, but it was past Jacob's bed time before we were finally set to go. The evening didn't end there. I still had several hours worth of work from being out of the office for three days. Vacation did feel very far away 24 hours back a home again.

This is Jacob yesterday. IV fluids running. Knee mobilizer still on Jacob's leg for his broken tibia bone, splint on his left arm for his elbow joint effusion. Jacob being in pain from broken bones and his ileus. None of these things are life threatening, but Jacob's current situation worries me. He doesn't catch a break right now. He has no chance to recover from one illness or fracture until he is hit again. If Jacob gets seriously ill right now, I am going to seriously worry for his life. And it's very hard to see him in pain. Very hard.

I will leave you with the words from the article writer:

Indeed, I will continue to fight, just as all the other parents on this journey with their child who has a life-limiting illness will do. We will fight on all levels, with all we can muster, because that is what we must do.

And so the fights goes on.

Love, Maria.

CHANGE IS IN THE AIR

School is coming to an end. Middle school is coming to an end for our girl. Work is ever changing being in the middle of an acquisition. Jacob's health is changing weekly, sometimes daily. Spring is turning into summer. With warmer temperatures, we typically have changes in Jacob's care. This is once again true.

I am typically an early adopter of change. I know I am much more productive in change than status quo. Change makes my brain work. It challenges me. But there is that one area I am not necessarily looking for change, and that is in Jacob's nursing care when it works. We are once again approaching change. Jacob's dear nurse Ana is reducing her hours with Jacob due to making sure she can keep her back strong and safe. Jacob is constantly growing, and is now weighing 75 pounds and is almost as tall as her. He is a big boy, who needs help with all transfers. Due to his multitude of issues, Jacob can't stay in any given position for very long, He needs constant change of position, and there are too many diaper changes in a day to count. Right now, we also have a knee mobilizer on his right leg to heal a tibia fracture, adding weight to any lifts we do.

We're in a better position than we have been in past years. We are today with a larger nursing agency committed to Jacob's care. We're not loosing our day nurse, she will just work fewer days. This means a lot to us, since nurse Ana is a really great fit for Jacob and us. We are also lucky that we have a young, genuine, and smart night nurse who is very excited to start working days with Jacob. It does mean we will be without night nursing for awhile until the agency can find a new night nurse. There is no break in Jacob's care. He needs monitoring around the clock, feed and medications always scheduled throughout the night, and always watching for seizures and other vital signs changes around the clock. It's something Joakim and I will have to step up.

It also means training our new day nurse, and once again give our trust to somebody else for our boy. It's a big responsibility, and I do get a little antsy before I fully trust a new person on Team Jacob. There is so much knowledge we're carrying around when it comes to our boy. I sometimes feel as if Jacob is a part of me, and I just know when something isn't right for him. I feel it in every fiber of my body. Maybe it's a mom's intuition? It's time to coach and lead someone to get that Fingerspitzengefuehl you need to keep Jacob at his best. To keep our boy happy and healthy.

More than anything I think it's a realization how big our boy has become. There is not a day going by without my gratitude for having Jacob in our lives. But he's not a little boy any longer. He's a big 10 years old boy. I have so far gotten by carrying Jacob without any back or other injuries. I think it's time to start using that ceiling lift track system we have had in our house for two years now. We're also very lucky to be able to get an adjustable adult changing table for Jacob where we can do a lot of his care at each person's level. Right now, we do all the care on a therapy mat in Jacob's room. I actually love our setup, but it's a big lift from the floor up and then carrying him through the upstairs to the stair lift. Jacob would also be more comfortable, and safer.

Change is in the air. I remember being really worried about work and nursing changes this time last year. It all fell into place, and turned into a really good year for all of us. I'm going to hold on to that thought as we're once again approaching change. It all happens for a reason.

And who can't be happy when Jacob ends the week with simply not being able to stop smiling after having had a rough week of stomach issues and long seizures?

To change. 

Have a great weekend everyone, Maria.

DEAR PICU,

We haven't met for a long time. It has in fact been 9 long months. It might be a record, since Jacob needed you the first time.

The last time we met I left you with great sadness. I remember thinking that it was the last time I was walking down the hallway with the staring glass doors. I had been told by two of Jacob's doctors that they didn't think Jacob had much time left to live. They told us to prepare for Jacob to pass. Luckily, the doctors jumped the gun. Our boy is still here, and in the familiar fish bowl tonight.

It's with mixed feelings, I meet you again PICU. The nurses and doctors are as excellent as they have always been. In fact, I am catching myself wanting to help out with a diaper change or sliding Jacob's vest under his back, but no need for a tired mom to take care of those things in the PICU. There is always a nurse ready to do the care. I'm still watching every movement from my chair, ready to jump in or give a little piece of advice if I think it can benefit our boy. Habits are hard to change.

PICU, you haven't changed much. The bathroom smell is ingrained in my memory, and it came right back at me. The fridge is a sad sight. Food is an after thought in here. Coffee cups are not. They fill the trash can to its' maximum. The bed screams for an egg crate mattress I forgot at home. The alarms are never ending. The sickest of the sick kids are filling all beds tonight.

PICU, if it weren't for the people in here, I would give out a big scream. But it's hard to not feel the compassion and heart from Jacob's team. They are all amazed to see Jacob's name on the board tonight. They realize how long it has been, since Jacob took a visit down to the 3rd floor. One fellow who has scratched his head numerous time thinking about what is truly going on with our boy said that Jacob just had to come and see him before he's heading back home to North Carolina to practice medicine. Many docs have followed Jacob for years, and taught them that no text book was ever written with him in it.

PICU, please take excellent care of my boy. I'm a scarred mom from our last encounter. I never ever wanted to put my foot in here ever again. I still remember the pain and tears from looking at Jacob's brain MRI and doctors shaking their serious heads. I still remember as if it were yesterday having heavy decision making on my shoulders as dad and sister were in Sweden. I still remember the urge to leave and take my boy home, so I could think clearly, something I couldn't do in the fish bowl, aka PICU.

PICU, I know my son needs you tonight. His blood pressure dipped in the ER earlier today. That stuff scares the pent house, aka 9th floor. I hope we can take all the brain power of Jacob's medical team, and figure out what is causing our boy to have a very high heart rate since last night and a blood pressure too low. It could be his atelectasis they discovered a week ago or it could be a new infection brewing. The big guns antibiotics are on board tonight.

PICU, let's find some peace together this time. I don't need any new scars.

Love, Maria.

FRIDAY NIGHT THOUGHTS ON BROKEN BONES

Life is a little bit of a whirlwind around here. A time when all areas of our lives seem to be busy at the same time. If six hours are allotted for sleep, it's a good 24 hours. Work is crazy busy, Children's and our non-profit are taking their share of time, Sarah is having a full schedule, and our boy's around the clock care just got a little more intense with a broken leg.

It's a good thing (not really) this is not Jacob's first break. It's good Jacob has a firm diagnosis of osteoporosis. It's a good thing I'm busy. If I weren't busy, there are many phone calls in the last week that would truly bug me, and would get a little piece of my heart. Luckily, life forced me to move on to the next thing during the day rather than me getting stuck.

A broken bone freaks people out. It's something people can relate to. Maybe it even happened to  you? Jacob's healthcare agencies, therapists, school teachers and therapists, some who hardly ever  bother to follow up, have all made a point to not just email me this week, but made sure I returned their calls. They want to know how Jacob broke his leg, they want the details, and they want to somehow figure out how they are going to not break a bone on our boy. They come with suggestions coming from a good place but not always making sense. There is a sense of fear and helplessness. The irony is that this is not life threatening. My boy has been so very sick so many times, and I have not always heard from these people when Jacob is fighting for his life in the PICU. Not a beep. A broken leg, and I have a full voicemail inbox. Does it bug me? Yes, it does bug me.

Jacob's so very dear endocrinologist who share so many of Jacob's health issues called me today. She's on sick leave, she's not doing well, she is sick, but she wanted to talk to me directly about Jacob. She was so genuinely sad that Jacob has a new break after four years of no break. She felt he had been doing so well, and that this was a setback with the plan we had come up with to manage Jacob's brittle bones. Her true sadness for our boy was what I needed to hear. It wasn't about writing an incident report or figuring out what hoyer lift to order, it was true compassion for our boy and what we could do to help Jacob from not having another broken bone. I don't think I realized how much I needed someone to meet me on that level rather than me having to once again put on my professional poker face explaining osteoporosis and saying once again that I don't know when and how Jacob broke his tibia bone. I simply don't know, and I won't make up this stuff - not even for an incident report.

I felt I could be Jacob's mom for the first time in a week, and tell her how I truly feel about a broken leg. I didn't have to be the one spitting out facts and comforting the other party that they can still safely care for my boy. I told her how sad I am to see Jacob being in pain. I told her how I start to second guess myself when I change Jacob's diaper. Am I using enough care when I roll Jacob from side to side? Jacob is not a little boy anymore. He's so big. Am I using proper technique every time I move and carry him? Are we doing everything we can?

We did get a piece of good news when we saw orthopedics this week. Jacob doesn't need a cast! Jacob should heal fine with a knee mobilizer. Jacob's tibia bone has already started to fuse, and there are large concerns about skin breakdown in a cast with a kid like Jacob. This makes carrying and caring for Jacob so much easier.

 

Jacob a week ago in his splint as we found out about his broken tibia bone.

 

Wednesday, Jacob got in his knee mobilizer.

 

As I am sipping my wine, catching up with my hubby, and watching Jacob peacefully sleep on his monitor, I know I get over this too. We're all on team Jacob, all caring about our boy. Hopefully, I even eased someone's worries and fears as much as Dr. G. did today with me. After all, it's not about me, it's about our boy. We have four weeks of this knee mobilizer to start. We'll then go back for new x-rays, and hoping our boy's leg will be back to normal. Time will tell, time will heal.

 

Love, Maria.

HELLO OSTEOPOROSIS!

We have gone five years without any broken bones. FIVE YEARS! I was devastated when Jacob got the diagnosis of osteoporosis. I was devastated when he broke his arm, had a herniated T4 vertebrae, and had a broken bone in his right shoulder. DEVASTATED. HEART BROKEN. FEELING LIKE A FAILURE.

We proud ourselves of the care we give Jacob every day. We don't take it lightly. We give it 100% at all times. We know what Jacob endures every day to live, and we will make his life the best life possible. Always, no matter what hour of the day he needs us. Somehow I know he knows that's our deal. We will fight for Jacob as long as he is willing to fight. No questions asked.

Jacob has received injections to make his bones stronger for the last five years. It is an injection every six months that takes the calcium from his body and put it all in his bones. Most kids go through these treatments for two years. Jacob has some of the most brittle bones out there, so his endocrinologist decided to go against the typical treatment plan, and told us early on that this was for life. We agreed. We go and visit with the cancer kids twice a year in the infusion center. We love and adore the nurses there. I don't always know what to do with my feelings around the tough cancer kids.

In the last week or so, Jacob has not slept. Some nights, he has not slept at all. Jacob has bad nights all the time, but typically he catches a little sleep. Not lately. His heart rate has been high, and we have been going to his normal causes of pain, e.g. his stomach. In the last 24 hours, we visited Children's three times to try to figure out what was going on. We did tons of labs, checked his urine, and also had an abdominal x-ray done. Nothing was found. In fact, his pancreas looks better than in a very long time!

I had mentioned the word broken bone this morning when talking to Special Care. If nothing was found, I think we would have to look at his bones. At 2 pm when all labs were back, we were asked to come in to check his bones. Dr. E. had said to her team that my intuition with Jacob is something out of the ordinary (thank you Dr. E), and it can't be ignored. A full body scan of a child is not something a doctor takes lightly, but because of my worry, a full body scan was ordered. I must say I didn't believe it myself. I thought it was just another thing we were ruling out.

BINGO! A big break in his right tibia! It is a big bone. A bone I rely heavily on when I bike and run. It was too late to get a hold of orthopedics, so the ER folks came over to give him a splint. We have to follow up first thing Monday morning with Ortho to see if Jacob needs a cast or can get away with a boot. Typically, this would require a full cast, but maybe, maybe, because he's not weight bearing, he might get a boot.

To top it off, the radiologist also discovered an atelectasis of his lower left lung, so we also came home on antibiotics and bipap for part of his day.

I don't know what makes me so upset about broken bones and Jacob. I feel I have failed him. I really feel guilty for this happening to him. He has most likely broken his tibia as we cared for him. It could have been with a diaper change or with a transfer. Jacob is a tall 10-years old kid over 70 pounds. With an added cast or boot to his leg, we're going to have to get very creative with his care.

A little light at the end of the tunnel is that Jacob feels better with his splint, elevated leg with a bag of frozen peas, and pain medications on board. He is SLEEPING.

And I'm a little proud of Jacob for actually telling us yesterday on his talker that his legs were hurting. He has become really good to tell us when his tummy is hurting, when he needs a diaper change or needs suctioning. Yesterday, he told us for the first time his legs were hurting...too bad we didn't jump on it right away.

Please keep Jacob in your prayers for a speedy recovery. Love, Maria.

ARE YOU THE COW OR THE BUFFALO IN A STORM?

We ended up with a spring storm this weekend, nothing uncommon for Colorado. It happens every spring. We are all ready for spring clothes and the outdoors, and instead we get stuck in our house. The snow left us with a pretty open Sunday. A Sunday to simply chill.

I ended up on the yoga mat in the gym. The yoga instructor was talking about how animals deal with storms. Cows can sense the storm long before the storm arrives. As they sense the storm, they start to move east, away from the storm. They don't move fast, and eventually the storm catches up with them.

Buffaloes also sense the storm before it arrives. They know they can't escape the storm. Instead of moving away from the storm, they move towards the storm. They embrace the challenge, since they know it will eventually pass.

How did you go about the spring storm? How do you go about the storms in your life? Do you embrace your challenges or do you move in the other direction?

It's a good question to ask. It got me thinking of this weekend. We had a spring party planned for 80 people in our Mito community today. It's a good feeling to see how our community is growing. With the growth, it's a larger event to plan with volunteers and nurses to take care of our children. As the first news came about the possible storm, I did not embrace the storm. I basically decided it wouldn't be that bad, even if the storm of course was completely outside of my control. I guess I was the pondering cow, but in the end, I came around. Some snow in April isn't that bad. A party can always be rescheduled, and I got a day without no plans. I got some time for my busy mind on the yoga mat. We watched movies together, and we cooked.

As I was soaking in sweat, I was thinking about the storms in my life. Storms typically come when Jacob is sick. I have no choice but to be the buffalo. I have to embrace the storm, the challenge. There is no moving away or avoiding the conflict or challenge. I have to be right there, face to face with the storm. The storms always leave their traces. It's the damage, the trauma, from the storm that sometimes stays with me.

This week, I ended up in both the Emergency Room and the PICU of Children's without Jacob. I didn't think much about it. Tuesday morning, we rounded some of the units of the hospital as part of our board meeting. I spent the first hour of my Tuesday morning without Jacob in the ER. It was a weird feeling. As we casually rounded the ER, I definitely had flashbacks from our numerous ER visits. The doctor who once saved Jacob's life was mentioned for his work in the ER. That brought me right back to that Monday in June 2009 when Jacob had to be intubated right on the spot, not a second too late.

On Friday, I ended up in the PICU to see a friend who was on day 30 in the PICU. Walking through the unit always brings up memories. Emotions of very sick children, emotions of a very sick Jacob. Feelings of not being in control, and of not knowing what the future will hold. I did get a big hug from one of the attending doctors wondering how Jacob is doing. It was a good hug. A bear hug from someone who understands the importance of "knocking on wood" when we both celebrated that Jacob hasn't needed the PICU since July of last year. We just never know when the storm will hit our family again. We love when the storm is at bay. We love our peace.
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So, how did you do this weekend with the late spring storm? How are you facing the storms in your life?  What direction are you moving in? Are you the cow or the buffalo?

To a good spring week! Love, Maria.