As we're going in to the holiday weekend, Jacob has turned a corner. He is off the bi-pap, his vitals are stable, and his edema (excess fluids in the tissue of his body) are finally starting to resolve. This turned into a longer stay than we were hoping Monday night. Unfortunately, Jacob was on an antibiotic for three days that his bacteria was resistant to. Wednesday night, we finally got the right antibiotics on board, and 48 hours later, our boy starts to look better!
Tomorrow will be telling if we get to go home this weekend or not. We have had a really great medical team this time. We have had Jacob's primary nurses all week, which has helped tremendously. They know him from before, and have really partnered with both us and the medical team.
We will go home on IV antibiotics this time to make sure we kill this nasty bacteria, and we will take things on Jacob time as we come back home.
Tonight, Sarah and I are having an evening at home while daddy is keeping down the fort with our boy.
I hope I'll write the next update with all of us home!
Have a great Labor Day weekend everyone.
Love, Maria.
Friday, September 4, 2015
Tuesday, September 1, 2015
WE'RE ON JACOB TIME
This is not the post I wanted to follow my previous post about being "at peace". Our boy is sick. That kind of sick when I can't calculate when we get to go home again. He has new unusual bacteria in his urine causing him to have a big nasty urinary tract infection. So a new ugly UTI from last week. It has made him pretty sick. He doesn't feel great and his heart rate has been high. The worst part is that his little body is so swollen. He hardly pees and instead we see his fluids in all other parts of his body. The medical team is concerned and we now have a plan to get rid of some of the fluids overnight with the help of some medicine. We hope Jacob's body responds. We hope Jacob's vitals, especially blood pressures, continue to be stable.
I have been around the block a little too long to know that we might wake up in the PICU tomorrow. He is just nearing that place slowly but surely. The doctor who is on tonight is great, and she knows Jacob from before, so I feel we're in good hands. I'm not packing my bags just yet, hoping we will be able to ride this out together from the 9th floor.
I also ended up with a terrible nurse tonight. First she sticks a too large catheter into his penis, and blames it on "restocking" issues (shouldn't you always check size?), and then I end up cathing him since she simply couldn't do it...a pretty simple nursing task on a boy if you ask me.
We're settling in for a long night with probably little to no sleep. The attending told me earlier today that Jacob might get sicker before he gets better this time. I think we're at that place tonight.
We appreciate any healing thoughts, juju and prayers for Jacob.
Love,
Maria.
I have been around the block a little too long to know that we might wake up in the PICU tomorrow. He is just nearing that place slowly but surely. The doctor who is on tonight is great, and she knows Jacob from before, so I feel we're in good hands. I'm not packing my bags just yet, hoping we will be able to ride this out together from the 9th floor.
I also ended up with a terrible nurse tonight. First she sticks a too large catheter into his penis, and blames it on "restocking" issues (shouldn't you always check size?), and then I end up cathing him since she simply couldn't do it...a pretty simple nursing task on a boy if you ask me.
We're settling in for a long night with probably little to no sleep. The attending told me earlier today that Jacob might get sicker before he gets better this time. I think we're at that place tonight.
We appreciate any healing thoughts, juju and prayers for Jacob.
Love,
Maria.
Saturday, August 29, 2015
AT PEACE
As Jacob woke up last Friday not looking well, there were so many emotions and feelings going through my mind. I was not ready to go back to Children's after how our last stay went in the PICU. I just wanted Jacob and us all to get a break. Before it was time to take Jacob in to see Dr. E, I decided to climb up Flagstaff on my bike. I was definitely not in the right mood for biking, but sometimes a really steep hill is the best medicine for my mind. You think of everything and nothing when you have to use both your physical and mental strength to climb a couple of the really steep switch backs reaching the top.
And as I was climbing, I got some clarity. "I needed peace". Ever since I left the PICU with Jacob on August 1st with doctors giving us conflicting opinions about Jacob's health and future, I really needed to put it to rest. I couldn't constantly have it be on my mind. Thinking about who's right, being angry at what was said and how it was said, and doubting my own judgment of Jacob. Second guessing myself as I was caring for Jacob. As my legs were burning from not having climbed for several weeks, I knew I had to put that behind me and find peace in living in the moment with my boy again. Knowing that Joakim and I are the two people who know Jacob the absolute best, and will always have Jacob's best interest in mind.
As I was taking Jacob in to Children's after the bike ride, closing down Special Care Clinic, and Dr. E. making the decision to admit Jacob since she was worried about his pancreas, I was ok. I knew something was wrong with Jacob, and that we needed him to feel better. It turned into a short stay on the floor, since bacteria was found both in Jacob's urine and gut. As the antibiotics kicked in, Jacob started to feel better. Luckily, both colitis and pancreatitis were ruled out in the end.
On Monday when we got home, Jacob didn't just look better, he looked so much better. Jacob's seizure control is back to his baseline. This makes me wonder if Jacob's tummy had given him trouble for a little bit longer than we thought and caused his increased seizure activity over the last couple of weeks. As I was finally slowing down, sitting on our front porch in the dark summer night with a few candles lit, I was at peace. I had found my peace again. I was in tune with our boy, and no matter what happens next, we're in it together - as long as I follow my gut and heart.
Love, Maria.
And as I was climbing, I got some clarity. "I needed peace". Ever since I left the PICU with Jacob on August 1st with doctors giving us conflicting opinions about Jacob's health and future, I really needed to put it to rest. I couldn't constantly have it be on my mind. Thinking about who's right, being angry at what was said and how it was said, and doubting my own judgment of Jacob. Second guessing myself as I was caring for Jacob. As my legs were burning from not having climbed for several weeks, I knew I had to put that behind me and find peace in living in the moment with my boy again. Knowing that Joakim and I are the two people who know Jacob the absolute best, and will always have Jacob's best interest in mind.
As I was taking Jacob in to Children's after the bike ride, closing down Special Care Clinic, and Dr. E. making the decision to admit Jacob since she was worried about his pancreas, I was ok. I knew something was wrong with Jacob, and that we needed him to feel better. It turned into a short stay on the floor, since bacteria was found both in Jacob's urine and gut. As the antibiotics kicked in, Jacob started to feel better. Luckily, both colitis and pancreatitis were ruled out in the end.
On Monday when we got home, Jacob didn't just look better, he looked so much better. Jacob's seizure control is back to his baseline. This makes me wonder if Jacob's tummy had given him trouble for a little bit longer than we thought and caused his increased seizure activity over the last couple of weeks. As I was finally slowing down, sitting on our front porch in the dark summer night with a few candles lit, I was at peace. I had found my peace again. I was in tune with our boy, and no matter what happens next, we're in it together - as long as I follow my gut and heart.
Love, Maria.
Friday, August 21, 2015
DAMN COLITIS!
We're ending the first week of school at Children's. Jacob has been sleepy the last two days, and I just couldn't figure out what was going on. I knew something was wrong, so today we went in to see Dr. E. After some initial blood work and an abdominal x-ray, we got the word that Jacob might have pancreatitis and there is also some blockage in his GI system. We closed down Special Care, and got moved to the Emergency Room for more tests.
After several hours in the ED, we got the results from the ultrasound. Jacob has some inflammation of his pancreas, but not enough to call it pancreatitis. He also has inflammation of his colon, which most likely means we're nearing a flare up of his ulcerative colitis. As my dear friend said when she heard the news: "Damn colitis!" I couldn't agree more. They are holding off on the CT scan tonight to see how he's doing over night. We are getting admitted, but luckily we're going straight to the floor.
Jacob is definitely in some pain with his tummy, luckily no increased seizure activity which is always a risk with pain for our boy. We hope this was caught early, so Jacob can go back to school soon again.
Love, Maria.
After several hours in the ED, we got the results from the ultrasound. Jacob has some inflammation of his pancreas, but not enough to call it pancreatitis. He also has inflammation of his colon, which most likely means we're nearing a flare up of his ulcerative colitis. As my dear friend said when she heard the news: "Damn colitis!" I couldn't agree more. They are holding off on the CT scan tonight to see how he's doing over night. We are getting admitted, but luckily we're going straight to the floor.
Jacob is definitely in some pain with his tummy, luckily no increased seizure activity which is always a risk with pain for our boy. We hope this was caught early, so Jacob can go back to school soon again.
Here are some photos from his first day of school:
Nurse Ana and Jacob ready to get on the school bus.
Waiting outside our house for the school bus.
Jacob being cool on the school bus!
Love, Maria.
Sunday, August 16, 2015
BROKEN CRYSTAL BALL, SHINGLES AND SUMMER COMING TO AN END
We sure have been on an emotional roller coaster the last couple of weeks. A week ago, I broke out in shingles. This is my 4th time in the last 10 years. It is always stress induced, always related to our boy. Nerve pain is pretty painful. It's a good reminder it's time to slow down. Unfortunately, my life doesn't always have an on/off switch button.
We did have a good appointment with Jacob's liver doctor this week. He didn't agree with Jacob's mito doctor that Jacob's liver is an indicator of progression of disease. Most likely the abnormal liver tests are medicine related. It could also be related to his ulcerative colitis. Jacob has a functioning liver. We have a plan in place, and we will work together to figure out what is going on. It was a good day for us.
The following day it was time for Jacob's care conference. So many emotions, so many theories, but by the end of the day no one but Jacob knows his future. Dr. E said her crystal ball has long been broken, and so is mine. I can only follow my heart, and in my heart our boy still has a lot of fight. He is a kid, and I would like him to be a kid for as long as he can. I want to fill each day with as much joy as I can for him.
Yes, Jacob's brain MRI is worse. Yes, Jacob's disease has progressed over time. But since no one knows what the future will hold for Jacob or any of us, we will go on living. We will enjoy our boy, we will enjoy each other. We will live one day at a time, and continue to enjoy each moment with Jacob.
I do feel his doctors jumped the gun this time. I am not sure what they truly accomplished for Jacob, but a lot of grief and stress for us. I do believe things happen for a reason, and if anything they reminded us of living each day as if it's our last.
We did have a good appointment with Jacob's liver doctor this week. He didn't agree with Jacob's mito doctor that Jacob's liver is an indicator of progression of disease. Most likely the abnormal liver tests are medicine related. It could also be related to his ulcerative colitis. Jacob has a functioning liver. We have a plan in place, and we will work together to figure out what is going on. It was a good day for us.
The following day it was time for Jacob's care conference. So many emotions, so many theories, but by the end of the day no one but Jacob knows his future. Dr. E said her crystal ball has long been broken, and so is mine. I can only follow my heart, and in my heart our boy still has a lot of fight. He is a kid, and I would like him to be a kid for as long as he can. I want to fill each day with as much joy as I can for him.
Yes, Jacob's brain MRI is worse. Yes, Jacob's disease has progressed over time. But since no one knows what the future will hold for Jacob or any of us, we will go on living. We will enjoy our boy, we will enjoy each other. We will live one day at a time, and continue to enjoy each moment with Jacob.
I do feel his doctors jumped the gun this time. I am not sure what they truly accomplished for Jacob, but a lot of grief and stress for us. I do believe things happen for a reason, and if anything they reminded us of living each day as if it's our last.
Daddy cuddle time.
Nothing will stop me from sitting up!
Taking a cat nap at the pool!
Swimming with mrs. Brittany.
Friendships in the pool!
Our dear nurse Ana & Jacob.
Movie time with sis.
Summer is slowly coming to an end, and this week Jacob will start 3rd grade!
Love, Maria.
Wednesday, August 5, 2015
LIVE AS IF YOU WERE GOING TO DIE TOMORROW, LEARN AS IF YOU WERE GOING TO LIVE FOREVER.
Live as if you were going to die tomorrow.
Learn as if you were going to live forever.
- Mahatma Ghandi
There is something I never get tired of, and it is to watch my boy sleep. He looks so peaceful, and his body is getting rest. Sometimes Jacob snores, sometimes he gives out these big deep sighs in between his breaths. His room is never completely quiet. You hear the sounds of his oxygen concentrator, bipap machine, and feeding pump. In the summer, we also have the big fan on around the clock.
Tonight, Jacob's dad and sister are coming back. As I wrote in my last post, I felt quite challenged to take care of Jacob around the clock by myself this time. Things got more intense before it got any easier. Tonight, I am hanging on to the rhythm we established during the two weeks. I figured out to do the job of two, and I stole so many kisses from my boy in being around him so much. In the end, this time was a gift.
Jacob's seizures did not let go last week. Instead they got more intense. A pattern very common to Jacob. On Thursday, it was time to take Jacob in. I knew his Phenobarbital level was low, and I knew he needed an IV load of the medication in order to stop the seizures. Due to this new kind of seizures, Jacob had a brain MRI on Friday evening.
On Saturday, Dr. C and Jacob's Mito doctor both came to see Jacob and I. I knew it wasn't good news that they came together. They reviewed Jacob's MRI from today with the last one he had three years ago. I didn't need an MRI to know Jacob's brain had gotten worse, but it makes it pretty black and white to see the two brain images side by side. In addition, Jacob has some abnormal liver test values, which would indicate progression of his disease. His Mito doctor used the words "Jacob is running out of time". Dr. C said if you have problems with your autonomic nervous system you might have 1-2 years to live, not 5-10 years.
I cried for three days. Friday, Saturday, Sunday. My closest friends checked in on me, some several times a day. You know who you all are. Monday, I started to get mad. I started to question what I had heard, and what it truly means to Jacob. I am smart enough to know that these feelings are all part of your grieving process.
But I think what I truly needed to hear was the words from my friend Heather. Heather, who has lost two children to Mitochondrial disease. "Nothing has changed". It's true. We have known for a very long time that Jacob's disease will never get better, it will only get worse. We have never known how long we will have Jacob with us, and I don't know that answer tonight. We have always wanted to give Jacob the best life possible, and that will not change now. If anything, we will try to live life true to Mahatma Ghandi's words even more:
Live as if you were going to die tomorrow.
Learn as if you were going to live forever.
This is taken as I was packing up to take Jacob to the ED on Thursday. Jacob was holding his new friend Jonah,
Learn as if you were going to live forever.
- Mahatma Ghandi
There is something I never get tired of, and it is to watch my boy sleep. He looks so peaceful, and his body is getting rest. Sometimes Jacob snores, sometimes he gives out these big deep sighs in between his breaths. His room is never completely quiet. You hear the sounds of his oxygen concentrator, bipap machine, and feeding pump. In the summer, we also have the big fan on around the clock.
Tonight, Jacob's dad and sister are coming back. As I wrote in my last post, I felt quite challenged to take care of Jacob around the clock by myself this time. Things got more intense before it got any easier. Tonight, I am hanging on to the rhythm we established during the two weeks. I figured out to do the job of two, and I stole so many kisses from my boy in being around him so much. In the end, this time was a gift.
Jacob's seizures did not let go last week. Instead they got more intense. A pattern very common to Jacob. On Thursday, it was time to take Jacob in. I knew his Phenobarbital level was low, and I knew he needed an IV load of the medication in order to stop the seizures. Due to this new kind of seizures, Jacob had a brain MRI on Friday evening.
On Saturday, Dr. C and Jacob's Mito doctor both came to see Jacob and I. I knew it wasn't good news that they came together. They reviewed Jacob's MRI from today with the last one he had three years ago. I didn't need an MRI to know Jacob's brain had gotten worse, but it makes it pretty black and white to see the two brain images side by side. In addition, Jacob has some abnormal liver test values, which would indicate progression of his disease. His Mito doctor used the words "Jacob is running out of time". Dr. C said if you have problems with your autonomic nervous system you might have 1-2 years to live, not 5-10 years.
I cried for three days. Friday, Saturday, Sunday. My closest friends checked in on me, some several times a day. You know who you all are. Monday, I started to get mad. I started to question what I had heard, and what it truly means to Jacob. I am smart enough to know that these feelings are all part of your grieving process.
But I think what I truly needed to hear was the words from my friend Heather. Heather, who has lost two children to Mitochondrial disease. "Nothing has changed". It's true. We have known for a very long time that Jacob's disease will never get better, it will only get worse. We have never known how long we will have Jacob with us, and I don't know that answer tonight. We have always wanted to give Jacob the best life possible, and that will not change now. If anything, we will try to live life true to Mahatma Ghandi's words even more:
Live as if you were going to die tomorrow.
Learn as if you were going to live forever.
This is taken as I was packing up to take Jacob to the ED on Thursday. Jacob was holding his new friend Jonah,
This is Jacob relaxing in the shade after having been at the pool today.
Time at the pool always puts this boy to sleep....
We have an intense week ahead of us. First thing Monday morning, we are meeting with Jacob's liver specialist to understand more what the liver results mean. Tuesday afternoon, we have a care conference with Jacob's core team of doctors and the PICU to discuss Jacob's care. It's going to be intense discussions and hard decisions.
We're not on an easy road, but we will cherish every good moment with our boy as we always have. Nothing has changed in that regard.
Love, Maria.
Tuesday, July 28, 2015
THREE YEARS IS A LONG TIME
Three years is a long time to not see your family. Joakim and Sarah are back in Sweden visiting with some family members they haven't seen in a very long time. Three years is also a very long time in a Mito kid's life. I have learned to say "Mitochondrial disease is a life threatening progressive disorder" without attaching emotions to that sentence. I can say it without falling apart. I also don't see the progression of Jacob's disease from day to day, only over time.
It has been three years since Jacob and I were alone for half a month. It is quite a different story today versus three years ago. This is when I can see the progression of Jacob's disease. It's funny how your memory fades over time. What I remember from that time is many hours at the pool, Jacob and I. I remember putting Jacob to bed and Jacob actually sleeping. I remember carrying Jacob being no big deal. I remember no colitis, no dysautonomia. I had a really good support system in Jacob's nurses Gemma and Libby. I was sure happy to have Joakim and Sarah back home, but it was also a special time to be alone with Jacob.
I have felt really challenged to be with Jacob alone this time. I am limping around the house in this big boot due to a fractured foot. I can't move around fast enough for Jacob, and at the same time I am not able to keep my foot in the boot as much as I should due to caring for Jacob. I don't have a good nurse team in place. I have really high hopes for our new day nurse, but she started three days ago. This means that I am never taking down my guard when it comes to Jacob during the day. I am still the one making sure things happen at the right time, watching for seizures and good breathing. And then we have the long nights following the busy days. The care for Jacob never stops. His oxygen can dip during the night, Jacob's brain doesn't let him sleep, or like last night I was monitoring seizures for hours. I was medicating Jacob close to midnight and then holding his little body, and finally letting the ugly cry out. Tears of exhaustion and this feeling of having Jacob's life on my shoulders. Tears because I so deeply love this boy.
When the morning comes around and you have had a chance to rest a little and your body has gotten some necessary caffeine, things always look up. We didn't end up in the ER overnight, we're still at home. Jacob is breathing, and getting a break from seizing.
We had a couple of doctor's appointments leading up to Joakim's and Sarah's Sweden trip. We saw our Belgian Mito doctor. He left me with three things. Jacob's liver is showing signs of illness but it will take decades before the liver will stop working. Jacob's mitochondrial disease is the bigger monster. Nevertheless, we're adding a liver doctor to Jacob's list of specialists. He also stated that he can see Jacob's disease slowly progressing. There was no "I'm sorry" or words to soften the sentence, just a fact. Because of the way he said it, it sure stuck with me. It got me thinking of our boy, and how he is changing. Lastly, he said that he has nothing to add to Jacob's care, since he is receiving the most excellent care. Coming from a man who fully understands Jacob's disease and all the interventions and management we do every hour of the day, I did take it as a compliment. I also loved how his face turned into a big grin when Jacob decided to end the doctor's appointment by telling his most intelligent Mito doctor: "I am cool and smart".
We also got to spend time with Jacob's endocrinologist this past week. She is growing on me every time we see her. She and Jacob have a lot in common. They are both steroid dependent for different reasons, and she truly understands what it means for you and your body to be dependent on steroids and what little changes to your steroid dose can do to your whole body. She called me after her surgery to tell me how it feels when you wean your steroids too quickly, something that has happened to Jacob on more than one occasion. She also told me she was thinking to call me on Mother's Day. She is managing 21 medications for her disease, always weaning at least one medication. She got to think about me and how I do that all the time. It was a nice recognition for something I just do every day. It is not unusual for us to have daily med changes in Jacob's life.
So where does that leave us three years later. First of all it gives me an incredible gratitude that Jacob is still in our lives. It also gives me an incredible joy to have gotten to know my Jacob through his talker, something we didn't know as much about three years ago. We still will make it to the pool this time - boot or no boot. But it has also made me realize that three years is a long time in Jacob's life, and things change. There will always be more things to manage, never less. And I do need my support system of my husband and my nurses to give Jacob the best life possible. It takes a village.
This is to hopes for a seizure free night. Love, Maria.
It has been three years since Jacob and I were alone for half a month. It is quite a different story today versus three years ago. This is when I can see the progression of Jacob's disease. It's funny how your memory fades over time. What I remember from that time is many hours at the pool, Jacob and I. I remember putting Jacob to bed and Jacob actually sleeping. I remember carrying Jacob being no big deal. I remember no colitis, no dysautonomia. I had a really good support system in Jacob's nurses Gemma and Libby. I was sure happy to have Joakim and Sarah back home, but it was also a special time to be alone with Jacob.
I have felt really challenged to be with Jacob alone this time. I am limping around the house in this big boot due to a fractured foot. I can't move around fast enough for Jacob, and at the same time I am not able to keep my foot in the boot as much as I should due to caring for Jacob. I don't have a good nurse team in place. I have really high hopes for our new day nurse, but she started three days ago. This means that I am never taking down my guard when it comes to Jacob during the day. I am still the one making sure things happen at the right time, watching for seizures and good breathing. And then we have the long nights following the busy days. The care for Jacob never stops. His oxygen can dip during the night, Jacob's brain doesn't let him sleep, or like last night I was monitoring seizures for hours. I was medicating Jacob close to midnight and then holding his little body, and finally letting the ugly cry out. Tears of exhaustion and this feeling of having Jacob's life on my shoulders. Tears because I so deeply love this boy.
When the morning comes around and you have had a chance to rest a little and your body has gotten some necessary caffeine, things always look up. We didn't end up in the ER overnight, we're still at home. Jacob is breathing, and getting a break from seizing.
We had a couple of doctor's appointments leading up to Joakim's and Sarah's Sweden trip. We saw our Belgian Mito doctor. He left me with three things. Jacob's liver is showing signs of illness but it will take decades before the liver will stop working. Jacob's mitochondrial disease is the bigger monster. Nevertheless, we're adding a liver doctor to Jacob's list of specialists. He also stated that he can see Jacob's disease slowly progressing. There was no "I'm sorry" or words to soften the sentence, just a fact. Because of the way he said it, it sure stuck with me. It got me thinking of our boy, and how he is changing. Lastly, he said that he has nothing to add to Jacob's care, since he is receiving the most excellent care. Coming from a man who fully understands Jacob's disease and all the interventions and management we do every hour of the day, I did take it as a compliment. I also loved how his face turned into a big grin when Jacob decided to end the doctor's appointment by telling his most intelligent Mito doctor: "I am cool and smart".
We also got to spend time with Jacob's endocrinologist this past week. She is growing on me every time we see her. She and Jacob have a lot in common. They are both steroid dependent for different reasons, and she truly understands what it means for you and your body to be dependent on steroids and what little changes to your steroid dose can do to your whole body. She called me after her surgery to tell me how it feels when you wean your steroids too quickly, something that has happened to Jacob on more than one occasion. She also told me she was thinking to call me on Mother's Day. She is managing 21 medications for her disease, always weaning at least one medication. She got to think about me and how I do that all the time. It was a nice recognition for something I just do every day. It is not unusual for us to have daily med changes in Jacob's life.
So where does that leave us three years later. First of all it gives me an incredible gratitude that Jacob is still in our lives. It also gives me an incredible joy to have gotten to know my Jacob through his talker, something we didn't know as much about three years ago. We still will make it to the pool this time - boot or no boot. But it has also made me realize that three years is a long time in Jacob's life, and things change. There will always be more things to manage, never less. And I do need my support system of my husband and my nurses to give Jacob the best life possible. It takes a village.
Jacob three years ago:
Jacob today:
This is to hopes for a seizure free night. Love, Maria.
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