I am a little sad to say that Jacob is not doing so great after the last post when I wrote about him doing really great lately. It just shows that no matter how great things are when Jacob gets sick, Jacob gets sick. This time around, Jacob had been fighting some sort of virus at home for five days. We actually thought he was on the mend, and would be back in school this week again.
Yesterday afternoon, I got a reminder how quickly a Mito kid can get sick, and go from bad to worse very, very quickly. Jacob had been hanging out with Gemma in the morning as we were taking Sarah for an early birthday celebration to her favorite restaurant in Denver. Jacob was happily helping Gemma with her last wedding preparations, and was as happy as he could be. As he woke up from his nap, I noticed his secretions had gotten much worse. He also couldn't hold his own oxygen. He needed 3 liters of oxygen to breathe. We realized we would run out of resources very quickly with Jacob's labored breathing and need of oxygen.
I honestly dread driving Jacob down to the ED when he is so sick. I am on the highway for most of the drive, and it is not easy to stop if Jacob needs something. The whole way down to Children's, Jacob's pulse ox was alarming due to his oxygen saturation dipping down in the 80s, and his heart rate going through the roof. Due to the flooding going on in our State, most people had decided to stay at home this evening, so it turned into a pretty quick drive with an alarming boy.
There is one advantage by coming in to the ED with a very sick Jacob. You don't have to go through admission and sit in the waiting room, we can go straight to the trauma unit. This is also what happened last night. Fairly quickly, they stabilized Jacob on 5 liters of oxygen, and Jacob fell into a deep sleep. His chest x-ray showed a possible pneumonia, so it was decided to start him on IV antibiotics right away. We were also told with him needing so much oxygen, we would be admitted to the floor.
There is never a short stay in the ED. Last night, we had a very smooth stay. That we have a dear friend in the ED who took excellent care of both Jacob and myself made the stay so much better. By midnight, we finally made it up to the floor.
An admission on the floor is never quick. They want to know Jacob's medical history, what had led up to the illness, verify all his medications, go over seizure action plans, go over feeding schedules, pulmonary toileting, and the list goes on and on. I quickly unpacked, since I knew we would stay for a while. By 2 am, I was finally ready to put my head on the pillow...but Jacob had other plans. As we came up to the floor, Jacob started to feel worse. His secretions were excessive. Poor little guy was swimming in his secretions. His myoclonus was also acting up, and it is a long time since I have seen Jacob being so twitchy, especially in his face. At the same time, he developed a high fever, his heart rate was shooting through the roof, and I honestly hadn't seen Jacob that sick since last fall.
RRT (Rapid Response Team) was mentioned by the doctor. I call RRT Children's internal 911. This is a medical team hospital staff or parents can call if they feel their child is getting worse, and they will get a second medical opinion from the PICU. In our case, calling RRT always means a trip down to the PICU. It was time to pack my things I just had unpacked.
We did our third admission that night in the PICU. When I finally put my head on the pillow it was 6 am! An hour and a half later, the resident couldn't wait any longer, and woke me up to talk about Jacob...
Today was a busy day in the PICU. It is always the case the first day of admission. All specialties involved will come and see us. The PICU nurse or somebody else from the PICU team was in and out of the room for most of the day. We know Jacob has a nasty strain of rhinovirus (typical cold) that has landed many kids in the PICU lately. In addition, he has a possible pneumonia. He is treated with big gun IV antibiotics, respiratory treatments every 4 hours around the clock, and is using his bi-pap day and night. He is not out of the woods just yet, but he seems to be responding to the medications and he has not spiked another fever today. It is really hard to say how long it will take Jacob to get better this time. The attending knows that Jacob has a very important wedding to attend on Thursday this week. His own Gemma is getting married, and he wouldn't like to miss it for the world. But as always, we're going to have to let Jacob decide how much time he needs to heal.
Cross your fingers that Jacob will quickly recover this time. He has places to be!
Good night, Maria.
Monday, September 16, 2013
Friday, September 13, 2013
TO DO OR NOT TO DO
We have been in a comfortable place for several months. Jacob has been healthy. Jacob has been thriving. He has gone to school consistently for several months. Jacob is doing incredibly well with his speech device. He is telling us things we just didn't think his buzzing brain could tell us. Jacob is improving in physical therapy. He is again sitting up with only a little support of his shoulders. It might not seem like a big deal, but for the last years Jacob has had little to no head control. Now, he can hold his heavy head up for close to 10 minutes. 10 minutes! Jacob is batting objects again. Jacob is standing in his stander again. Jacob is a happy content boy when he doesn't constantly have to fight viruses and infections or those dreaded seizures. We don't know for sure what has changed, but we think the magical non-FDA approved drug epi-743 is part of Jacob feeling so great. Improved immune system and increased alertness are consistently reported with the use of epi. We suddenly have both. They are gifts of life, and it makes me incredibly happy to see where our boy is today.
No matter how happy we are in our little bubble at home, Jacob's mitochondrial disease is a fact and we do get reminded of it every time we sit in the doctor's office. As Jacob has outlived his prognosis with 4 years, we are again confronted with hard decisions I honestly never thought I would have to face. Decisions where there is no right or wrong answer. Decisions where the big question is to do or not to do.
Jacob is growing. He has always been at the high percentile for weight and height. As Jacob is growing, we now need to carry him sideways thru doors in order for his feet or head to not get stuck. We can't just sit holding him in a chair any longer. We need a second chair for his legs and feet to rest. My body is tired after a full day of transfers from morning til evening. Jacob's endocrinologist want us to consider stopping Jacob's growth. She can see how involved his care is, and how many transfers we have to do in a day. No hormonal treatments come without side effects, seizures being the biggest possible side effect for us. In the last couple of months, we have discussed this option with Jacob's medical core team, and the short answer is that there is no quick and easy answer. Some feel we should not rock the boat, and simply let Jacob grow. Some feel that caring for Jacob and keeping him at a smaller size is a key part of his medical care. The big question is to do or not to do?
Jacob is an obstructive breather. Jacob needs deep suctioning multiple times every day to clear his secretions. Jacob has an extensive pulmonary toileting program taking hours each day to keep his lungs clear. In the last couple of months, we have noticed that Jacob's gag reflux has weakened. This is most likely happening from us having deep suctioned Jacob multiple times every day for years...that is a lot of deep suctioning. If we can't keep Jacob's lungs clear with deep suctioning, a tracheostomy would be the only option to keep Jacob's lungs clear. We have battled this decision in the past. The question is do we continue down the road we are right now with our pulmonary toileting, since pneumonias have been far apart or should we be proactive about it? To do or not to do?
Jacob's clinical seizures are well controlled today. We execute his seizure action plan maybe every 4-6 weeks right now. Of all things in Jacob's life, uncontrolled seizures are the hardest to live with. They are dangerous to Jacob, and we so often have absolutely no way of stopping them. There is a feeling of being out of control and fear for Jacob's life. When Jacob goes into status epilepticus multiple times a day, we have no life. We basically just sit and wait for the next seizure, and debate on when is the right time to bring him to Children's. I will never get used to Jacob's seizures. To control his epilepsy, Jacob is on more seizure medications than is good for any human being. They eat at his liver, and none of them come without side effects. We have over the last couple of years been able to reduce Jacob's seizure medications drastically, but he still gets a shit load of medications every day. We're going into fall, which typically means more infections and seizures for our boy. Do we still try to reduce his medications once again or do we keep things as they are, since seizures are at bay? To do or not to do?
In times of hard decisions, I wish I could peak into the future. I wish I would have a better sense of Jacob's future, and knowing if now is the right time to act or not. We never want to do any medical intervention that is not absolutely necessary. At the same time, we know with Jacob having a progressive disorder, that there might come a time when there is too late for certain interventions. We also know that sometimes a straight-forward medical decision will open up a can of worms. Devastating side effects nobody would have ever thought would be possible...To do or not to do? It keeps my mind occupied, always wanting to do the right thing for our boy.
As I was preparing dinner the other night, Sarah and Jacob were sitting at the kitchen table both working on their homework. Gemma was helping Jacob to fill out his paper about good behaviors to use in class. Sarah was sitting next to him doing her Spanish homework, and telling her brother to pick the "not so good behavior", and of course he went with what sister wanted. It was one of those perfect moments of my two kids interacting in their own way. I am just not sure I am ready to rock the boat as things are pretty darn good.
Love, Maria.
No matter how happy we are in our little bubble at home, Jacob's mitochondrial disease is a fact and we do get reminded of it every time we sit in the doctor's office. As Jacob has outlived his prognosis with 4 years, we are again confronted with hard decisions I honestly never thought I would have to face. Decisions where there is no right or wrong answer. Decisions where the big question is to do or not to do.
Jacob is growing. He has always been at the high percentile for weight and height. As Jacob is growing, we now need to carry him sideways thru doors in order for his feet or head to not get stuck. We can't just sit holding him in a chair any longer. We need a second chair for his legs and feet to rest. My body is tired after a full day of transfers from morning til evening. Jacob's endocrinologist want us to consider stopping Jacob's growth. She can see how involved his care is, and how many transfers we have to do in a day. No hormonal treatments come without side effects, seizures being the biggest possible side effect for us. In the last couple of months, we have discussed this option with Jacob's medical core team, and the short answer is that there is no quick and easy answer. Some feel we should not rock the boat, and simply let Jacob grow. Some feel that caring for Jacob and keeping him at a smaller size is a key part of his medical care. The big question is to do or not to do?
Jacob is an obstructive breather. Jacob needs deep suctioning multiple times every day to clear his secretions. Jacob has an extensive pulmonary toileting program taking hours each day to keep his lungs clear. In the last couple of months, we have noticed that Jacob's gag reflux has weakened. This is most likely happening from us having deep suctioned Jacob multiple times every day for years...that is a lot of deep suctioning. If we can't keep Jacob's lungs clear with deep suctioning, a tracheostomy would be the only option to keep Jacob's lungs clear. We have battled this decision in the past. The question is do we continue down the road we are right now with our pulmonary toileting, since pneumonias have been far apart or should we be proactive about it? To do or not to do?
Jacob's clinical seizures are well controlled today. We execute his seizure action plan maybe every 4-6 weeks right now. Of all things in Jacob's life, uncontrolled seizures are the hardest to live with. They are dangerous to Jacob, and we so often have absolutely no way of stopping them. There is a feeling of being out of control and fear for Jacob's life. When Jacob goes into status epilepticus multiple times a day, we have no life. We basically just sit and wait for the next seizure, and debate on when is the right time to bring him to Children's. I will never get used to Jacob's seizures. To control his epilepsy, Jacob is on more seizure medications than is good for any human being. They eat at his liver, and none of them come without side effects. We have over the last couple of years been able to reduce Jacob's seizure medications drastically, but he still gets a shit load of medications every day. We're going into fall, which typically means more infections and seizures for our boy. Do we still try to reduce his medications once again or do we keep things as they are, since seizures are at bay? To do or not to do?
In times of hard decisions, I wish I could peak into the future. I wish I would have a better sense of Jacob's future, and knowing if now is the right time to act or not. We never want to do any medical intervention that is not absolutely necessary. At the same time, we know with Jacob having a progressive disorder, that there might come a time when there is too late for certain interventions. We also know that sometimes a straight-forward medical decision will open up a can of worms. Devastating side effects nobody would have ever thought would be possible...To do or not to do? It keeps my mind occupied, always wanting to do the right thing for our boy.
As I was preparing dinner the other night, Sarah and Jacob were sitting at the kitchen table both working on their homework. Gemma was helping Jacob to fill out his paper about good behaviors to use in class. Sarah was sitting next to him doing her Spanish homework, and telling her brother to pick the "not so good behavior", and of course he went with what sister wanted. It was one of those perfect moments of my two kids interacting in their own way. I am just not sure I am ready to rock the boat as things are pretty darn good.
Love, Maria.
Sunday, September 8, 2013
THE MELTING POT ONCE AGAIN!
Tonight's post can be found on Miracles for Mito's website:
http://www.miraclesformito.com/default.aspx
Have a great week everyone! - Maria.
http://www.miraclesformito.com/default.aspx
Have a great week everyone! - Maria.
Saturday, August 31, 2013
A LITTLE SATURDAY EXCURSION
Fresh flowers and basil make my mom happy. She loves to put fresh flowers in vases all around our house. She has a vase for every size flower bouquet. She loves the smell of basil. She loves making pesto, the fresh smell of basil and garlic together. She freezes her pesto in little plastic containers, and we use it for months with pasta and on baked fish. It is especially good with salmon according to my mom.
My mom loves going to Berry Patch Farms. Sarah and mom typically make it there once or twice each summer. This summer they never got around to it. Today, we suddenly had an open afternoon all to ourselves, and we decided to all go together. It was the first time for me.
The farm is typically a really busy place. Late afternoon is a good time to go, if you want a handicap spot and not necessarily need the crowds. We almost had the whole farm to ourselves! The not so good part is that the berry picking was done for the day. I am not so sure that I could have gone out on the strawberry fields, but I definitely could have come out to the raspberry fields.
We had plenty of times to pick out our flowers. Mom also got plenty basil.
We ended the afternoon on the front porch. Mom was swinging me in the rocking chair, and I felt a slight breeze.
I am wondering if this is how my folks will look when they grow old?! Sitting on the front porch in their rocking chairs...just wondering...
I hope you're all having a great Labor Day weekend!
Love, Jacob.
My mom loves going to Berry Patch Farms. Sarah and mom typically make it there once or twice each summer. This summer they never got around to it. Today, we suddenly had an open afternoon all to ourselves, and we decided to all go together. It was the first time for me.
The farm is typically a really busy place. Late afternoon is a good time to go, if you want a handicap spot and not necessarily need the crowds. We almost had the whole farm to ourselves! The not so good part is that the berry picking was done for the day. I am not so sure that I could have gone out on the strawberry fields, but I definitely could have come out to the raspberry fields.
We had plenty of times to pick out our flowers. Mom also got plenty basil.
We ended the afternoon on the front porch. Mom was swinging me in the rocking chair, and I felt a slight breeze.
I am wondering if this is how my folks will look when they grow old?! Sitting on the front porch in their rocking chairs...just wondering...
I hope you're all having a great Labor Day weekend!
Love, Jacob.
Sunday, August 25, 2013
THAT HARD QUESTION
There were many questions for Jacob's first day of school:
The one question that I still struggle with to answer is "what's wrong with him?" This questions didn't come up on Jacob's first day of school, but it will come. It often comes in passing. We are on our way to or from school. We are loading Jacob in or out of the car. It happens at the pool, and other public places. I know the question is not coming from a bad place, but it hits me hard in my stomach every time. It has taken me many years to come to a place where I feel I can turn this question into a good conversation where the asking kid can find out a little bit more about our boy.
The answer can not be: Jacob has a mitochondrial disease or starting to rattle off the list of diagnoses Jacob has. What will a child do with that? It sure didn't tell me much the first time I was told Jacob has a mitochondrial disease. What I have learned to say is something along the lines of: this is how Jacob was born. This is how he is. I have learned it is a good opening for more questions, e.g. why isn't he talking and walking. We can then start talking about how Jacob talks, how Jacob moves around. It strikes me every time how curious kids are about how Jacob does the things they do themselves every day. The accompanying parents also start to relax when they notice an actual conversation. Sometimes they even join in.
So as hard as some questions can be, keep them coming! The more people know about Jacob and other kids like him, the less intimidated kids and adults get. It is typically the first sign that we're off to a good school year.
I am ending with some glimpses from Jacob's first day back at school:
Love, Maria.
- Why doesn't he talk?
- Why doesn't he walk?
- How does he eat?
- Why is his head tilted back? Why does he have a thing around his neck?
- Why does it sound like he is snoring?
- Why does he have a pillow for his legs?
The one question that I still struggle with to answer is "what's wrong with him?" This questions didn't come up on Jacob's first day of school, but it will come. It often comes in passing. We are on our way to or from school. We are loading Jacob in or out of the car. It happens at the pool, and other public places. I know the question is not coming from a bad place, but it hits me hard in my stomach every time. It has taken me many years to come to a place where I feel I can turn this question into a good conversation where the asking kid can find out a little bit more about our boy.
The answer can not be: Jacob has a mitochondrial disease or starting to rattle off the list of diagnoses Jacob has. What will a child do with that? It sure didn't tell me much the first time I was told Jacob has a mitochondrial disease. What I have learned to say is something along the lines of: this is how Jacob was born. This is how he is. I have learned it is a good opening for more questions, e.g. why isn't he talking and walking. We can then start talking about how Jacob talks, how Jacob moves around. It strikes me every time how curious kids are about how Jacob does the things they do themselves every day. The accompanying parents also start to relax when they notice an actual conversation. Sometimes they even join in.
So as hard as some questions can be, keep them coming! The more people know about Jacob and other kids like him, the less intimidated kids and adults get. It is typically the first sign that we're off to a good school year.
I am ending with some glimpses from Jacob's first day back at school:
Love, Maria.
Wednesday, August 21, 2013
HANGING ONTO SUMMER
Last night, I was at back-to-school night for our middle schooler Sarah. As the teachers were talking about electives, upcoming homework, and websites I have to check, I realized I was still hanging onto summer. Tomorrow Jacob starts 1st grade and Sarah starts 6th grade, so it is high time to snap out of summer mode. This summer went by so fast!
Jacob's highlight was summer school. He went to school 5 weeks. I was happily surprised to see the support Jacob got at school over the summer. He made many friends, and got to spend quality time with his Kindergarten teacher Mrs. Pries. They were only a couple of students in Jacob's class, so he had lots of attention from Mrs. Pries, his two paras Mrs. Peggy and Mrs. Ruth, and his speech therapist Mr. John. He had a great team once again. Jacob really liked his friend Bella. He told her on the first day of school he loves her :- School also gave Jacob a lot of practice with his talker this summer.
We love to spend time in the pool, sometimes the only place Jacob can be outside in the summer time due to the Denver heat. This summer, we didn't make it to the pool as much as we like, but we still had some great time together in the water!
And there is nothing like taking a nap in the shade after a dip in the pool!
Sarah kept herself busy with swim team and golf this summer. She also went to a volleyball camp she really enjoyed. Sarah has also been quite the traveler this summer. Sarah and I spent a few days in Breckenridge with our friend Yvonne.
She then went on her first road trip with Joakim! They headed to Yellowstone for a couple of days, and had a great time together.
Sarah came to Copper to cheer me on!
Lastly, we rounded up our summer going back to Sweden visiting family and friends. It was a great mom and daughter trip, and we will cherish the memories as we go into fall.
Tomorrow, we will be gearing up for school once again, but I think we will still hang onto summer just a little longer :- This was a good one.
Love, Maria.
Jacob's highlight was summer school. He went to school 5 weeks. I was happily surprised to see the support Jacob got at school over the summer. He made many friends, and got to spend quality time with his Kindergarten teacher Mrs. Pries. They were only a couple of students in Jacob's class, so he had lots of attention from Mrs. Pries, his two paras Mrs. Peggy and Mrs. Ruth, and his speech therapist Mr. John. He had a great team once again. Jacob really liked his friend Bella. He told her on the first day of school he loves her :- School also gave Jacob a lot of practice with his talker this summer.
We love to spend time in the pool, sometimes the only place Jacob can be outside in the summer time due to the Denver heat. This summer, we didn't make it to the pool as much as we like, but we still had some great time together in the water!
And there is nothing like taking a nap in the shade after a dip in the pool!
Sarah kept herself busy with swim team and golf this summer. She also went to a volleyball camp she really enjoyed. Sarah has also been quite the traveler this summer. Sarah and I spent a few days in Breckenridge with our friend Yvonne.
She then went on her first road trip with Joakim! They headed to Yellowstone for a couple of days, and had a great time together.
Sarah came to Copper to cheer me on!
Lastly, we rounded up our summer going back to Sweden visiting family and friends. It was a great mom and daughter trip, and we will cherish the memories as we go into fall.
Tomorrow, we will be gearing up for school once again, but I think we will still hang onto summer just a little longer :- This was a good one.
Love, Maria.
Saturday, August 17, 2013
RACE DAY!
Some of the best moments with Jacob are the moments when we are doing "normal" things together. Things most people wouldn't think twice about doing. Things that sometimes are just not possible to do with Jacob like running a race together. I didn't see it as a possibility, but this morning we did! We ran a 5K together.
Jacob's speech therapist Brittany had asked him to join her for a 5K race. She would push him in his stroller, and they would do the race together from start to finish. She wanted to bring one of her kiddos who she knew would never be able to race by himself. At first, I had my reservations. We would have to be at the start way before Jacob typically is up and running for the day. It is still very hot in Denver, and Jacob just doesn't do well with heat. Would this be a good thing for him? I actually turned down the offer the first time...As his speech therapist brought it up a second time, I just couldn't resist her willingness to share her Saturday morning with Jacob. Yes, we would make it happen.
Joakim and I prepared everything Friday evening from meds to feeds to equipment, so we would be ready to leave the house on time. Jacob's sleep is never great, but this night turned into a bad one. Jacob decided to wake up at 12:30 am and never really went back to sleep.. Jacob was starting to doze off as we were starting to get him ready for the day. I honestly thought he would sleep through the whole race. As we were putting Jacob in the car, he opened his eyes just a little bit, and he was then awake for the whole event. He knew he didn't want to miss this morning.
Brittany and Jacob did great as a team! Jacob simply loved the motion of the stroller, and had a blast! The sky was over casted, so he didn't once flush from the heat. Brittany did great, never lost her spirit, despite her heavy load this morning. Joakim and I are not exactly runners, but we finished the 5K as well. We were there for Jacob's medical support, just in case he needed to be suctioned.
It was a great morning. It was a milestone and great accomplishment for Jacob. The feeling of having done something "normal" together as a family. I am even talking Joakim into us starting to run with Jacob together. We will see if we can start doing it as the fall temperatures kick in.
To a perfect race day!
Thanks Brittany for being Jacob's partner this morning!
Love, Maria.
Jacob's speech therapist Brittany had asked him to join her for a 5K race. She would push him in his stroller, and they would do the race together from start to finish. She wanted to bring one of her kiddos who she knew would never be able to race by himself. At first, I had my reservations. We would have to be at the start way before Jacob typically is up and running for the day. It is still very hot in Denver, and Jacob just doesn't do well with heat. Would this be a good thing for him? I actually turned down the offer the first time...As his speech therapist brought it up a second time, I just couldn't resist her willingness to share her Saturday morning with Jacob. Yes, we would make it happen.
Joakim and I prepared everything Friday evening from meds to feeds to equipment, so we would be ready to leave the house on time. Jacob's sleep is never great, but this night turned into a bad one. Jacob decided to wake up at 12:30 am and never really went back to sleep.. Jacob was starting to doze off as we were starting to get him ready for the day. I honestly thought he would sleep through the whole race. As we were putting Jacob in the car, he opened his eyes just a little bit, and he was then awake for the whole event. He knew he didn't want to miss this morning.
Brittany and Jacob did great as a team! Jacob simply loved the motion of the stroller, and had a blast! The sky was over casted, so he didn't once flush from the heat. Brittany did great, never lost her spirit, despite her heavy load this morning. Joakim and I are not exactly runners, but we finished the 5K as well. We were there for Jacob's medical support, just in case he needed to be suctioned.
It was a great morning. It was a milestone and great accomplishment for Jacob. The feeling of having done something "normal" together as a family. I am even talking Joakim into us starting to run with Jacob together. We will see if we can start doing it as the fall temperatures kick in.
To a perfect race day!
Thanks Brittany for being Jacob's partner this morning!
Love, Maria.
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