The medi-port doesn't leave my mind. We need to make some larger decisions, and I am not sure what the right answer is. I do know Jacob needs to have good access to IV fluids and IV medications right now. I got to see first hand yesterday what it means to not have good access. Jacob had a dangerously low glucose of 31 after having been off his fluids for 2 hours (which Metabolics had said would be fine), and the line clogged when the nurse tried to give him a bolus of dextrose to get his sugar level up. An RRT (Rapid Response Team) was called on Jacob, and the PICU team rushed up to assess Jacob. I call RRT, Children's own 911. It is never good news when an RRT is called on Jacob. Luckily, with orange juice put into his tummy (despite gut rest), Jacob responded and his sugar came up.
We repeated the line study yesterday, and we do know the port is intact. We also know the port isn't drawing well, and it clogs easily. We know Jacob has lots of swelling due to the port being infiltrated on Thursday and overall edema from being sick with pancreatitis. In fact, this last needle could only be placed with a camera showing where the port was located. The nurse would never have been able to access him by simply feeling the edges of the port. So, if the current needle get dislocated or it's time for a needle change, we don't know how easy the port could be accessed again - or at all. We also know this port is old. 7 years this port has kept our Jacob alive by giving him necessary IV fluids and necessary IV antibiotics, steroids and medications when he has needed them. Typically a port lasts 1-3 years before it needs to get replaced.
So, why is this decision so hard? Why don't we just jump to surgery? Everyone gets very nervous to put Jacob under anesthesia. It's definitely considered a life-threatening event for him. Will he survive? I have tears in my eyes just thinking about it. But I also do know that Jacob can't live without a port, especially not now when he has pancreatitis and needs to be on gut rest. He needs to get his fluids and medications through a line.
With Jacob having the most terrible veins, our options are limited as well. A regular IV was put in Jacob on Thursday, and it lasted less than 24 hours before it came out. He got a second one put in yesterday, but it can stop working today. Three years ago, we were told to never put a PICC line in Jacob again. It only lasted 48 hours before it came out. We could have the PICU put a central line in Jacob, but it also entails risks, and it's a temporary solution. A functioning port is the only long-term solution.
I very seldom use Dr. E's private cell phone, but yesterday I did. It was 5 pm in the hospital, and I was afraid if I would go through the regular channels I would miss her. Within 5 minutes, she was up in Jacob's room. She feels we should try to hang on to the temporary IV line and his existing port over the weekend. We should plan for a new medi-port with Jacob's anesthesiologist who knows him next week. If we lose access this weekend, an emergency medi-port surgery could be done.
Last night, I was completely exhausted from having lost a complete night of sleep and being in an emergency state with Jacob for over 48 hours. I realized I hadn't sat down all day yesterday before I finally sat down in the car on the way home at night. I slept a little better at home, but it wasn't perfect sleep. My brain kept reminding me of our reality.
From the abdomen ultrasound, we got some good news. The pancreatitis is not due to some constructional issues/errors in his abdomen. The pancreatitis is most likely viral. The bad thing is that when you have had one pancreatitis, they often happen again...GI is willing to slowly get Jacob off gut rest, and start feeds at a super slow rate some time over the weekend, if his lipase are starting to come down.
So, we're going in to this weekend hoping for clarity and the right
decision for our boy. I'm still hearing this little voice in my head
"what if his existing port could give him some more time when the
swelling goes down?" And then another voice says "or will it infiltrate
again?" "will we be in an emergency situation with no access"? We saw first hand yesterday that Jacob started crashing after two hours without fluids when he's sick.
Tomorrow, Joakim, Sarah and I were going to go on vacation. We have this
really fancy condo up in Breckenridge we traded for our time share. We
had nurses lined up around the clock to start tomorrow evening. We were
excited to get some down time and skiing in this winter. It's too late to get any money back or get it rented out. It
breaks my heart to have to disappoint Sarah. We're hoping maybe somehow
we can have one of us make it up there with her some time this week, but
right now all schedules are up in the air.
Once again, we're amazed with everyone rallying for Jacob and us. We feel the support always. You all keep us going.
Much love, Maria.
Saturday, February 13, 2016
Thursday, February 11, 2016
A STRESSFUL DAY
There are times when I think back about stressful moments with Jacob, and I seriously don't know how I endured it. I think today is going to be added to that list.
Jacob has confirmed pancreatitis. Jacob has an ileus, which is common with pancreatitis. GI tells me that I should not worry about bowel obstruction. They don't see anything indicating it right now. They are doing a abdomen ultrasound to get a better idea of his pancreatitis. That makes me feel better. They are also going to monitor his liver once again. He's also pooping again, which is a good sign.
Jacob has lots of edema. He looks like a little sumo wrestler, just a little cuter. When we do his vest treatment, his cheeks are shaking. For Jacob, it means his body isn't absorbing its fluids correctly, and it's going into other body parts like his face, arms, hands, legs and feet. This is not good for so many reasons. The attending didn't want to correct it with a medication that makes him pee out the extra fluids. She wanted to "wait and see". We have had her a few years ago, and it was a disaster stay due to her "wait and see" attitude. When I got in here today, I immediately had to escalate for getting the edema off Jacob. I have seen the fluids going into his lungs and impacting his breathing, which then leads to a completely different hospital stay - most likely not on the floor.
In the middle of trying to get his fluids sorted out, we realize that his medi-port was leaking. His whole chest and shoulder were filled with fluids that should have gone into his line and into his blood. Did the needle get dislocated or did the actual medi-port break? The medi-port is Jacob's life line. We haven't been able to get an IV into Jacob's veins since 2008. That is the whole reason he got a medi-port in 2009. It is an old port, but man has it been working great. We knew there would be a day it wouldn't work any longer, but I just didn't foresee today being the day.
To find out if the port is working or not, you need a "line study". I was told by surgery it couldn't happen today, since it was after 5 pm and surgery only does "life-threatening procedures" after 5 pm. I wasn't comfortable with that answer knowing that Jacob can't be without fluids due to his Mitochondrial disease. They were able to place an IV, but we all knew it might not last overnight. It was definitely a temporary solution.
To get on surgery's list after 5 pm, you need the attending of the floor and the attending of radiology to make a decision. It was decided Jacob needed the line study tonight. I was so relieved, and happy his team advocated for him. Even if we would receive bad news, I rather wanted to know than not know.
The minute we entered the room, I could feel the coldness from the radiologist. She wasn't happy to know that we didn't know if the needle was in the right spot or not. She was on a time schedule, and this better happen quickly. She could quickly see that the needle wasn't in the right place, which we knew. She couldn't see the port on the film. She wanted the nurse to re-access Jacob right there on the table - as long as the nurse could do it within 5 minutes. I felt the poor nurse was forced to access Jacob without truly taking the time to feel the edges of the port. Instead she was blindly shooting into his chest. With that approach, you are not going to be able to access Jacob. Period. As soon as the radiologist heard that the nurse wasn't able to access Jacob. She shook her shoulders, said there was nothing more she could do, and left the room. Oh man, this was so not patient focused care. I was just thinking she didn't do it to the right family...
As I have had a chance to calm down, stress eating pop corn and crackers all afternoon and evening long, thinking a glass of wine sounds really good, I do believe we have a plan for the night. The charge nurse is going to give it another try to access him before she leaves in the morning. I love how comfortable she is with medi-ports. If she can't get him, they will order another line study for the early part of tomorrow - just in case - we need to schedule a medi-port surgery for tomorrow. It makes me sick to even write that sentence. I just don't even want to think about putting Jacob under anesthesia tomorrow, and what that could entail for him.
Jacob and I are going to try to get some rest. Before 7 am, I am going to know if we have functioning medi-port again or not or if I need to find my inner strength for another day of medi-port chaos.
Send positive thoughts and prayers Jacob's way. He truly needs them tonight.
And just to end tonight on a little more positive note. Jacob and I got featured in this article today about hope and living with mitochondrial disease:
http://www.statnews.com/2016/02/11/mitochondrial-disease-therapies/
Thanks again to all of you checking in with us all day long. We feel your support every step of the way.
Love, Jacob & Maria.
P.S. For all of you who have asked about Sarah. She is still home with a cold, but doing a little better tonight.
Jacob has confirmed pancreatitis. Jacob has an ileus, which is common with pancreatitis. GI tells me that I should not worry about bowel obstruction. They don't see anything indicating it right now. They are doing a abdomen ultrasound to get a better idea of his pancreatitis. That makes me feel better. They are also going to monitor his liver once again. He's also pooping again, which is a good sign.
Jacob has lots of edema. He looks like a little sumo wrestler, just a little cuter. When we do his vest treatment, his cheeks are shaking. For Jacob, it means his body isn't absorbing its fluids correctly, and it's going into other body parts like his face, arms, hands, legs and feet. This is not good for so many reasons. The attending didn't want to correct it with a medication that makes him pee out the extra fluids. She wanted to "wait and see". We have had her a few years ago, and it was a disaster stay due to her "wait and see" attitude. When I got in here today, I immediately had to escalate for getting the edema off Jacob. I have seen the fluids going into his lungs and impacting his breathing, which then leads to a completely different hospital stay - most likely not on the floor.
In the middle of trying to get his fluids sorted out, we realize that his medi-port was leaking. His whole chest and shoulder were filled with fluids that should have gone into his line and into his blood. Did the needle get dislocated or did the actual medi-port break? The medi-port is Jacob's life line. We haven't been able to get an IV into Jacob's veins since 2008. That is the whole reason he got a medi-port in 2009. It is an old port, but man has it been working great. We knew there would be a day it wouldn't work any longer, but I just didn't foresee today being the day.
To find out if the port is working or not, you need a "line study". I was told by surgery it couldn't happen today, since it was after 5 pm and surgery only does "life-threatening procedures" after 5 pm. I wasn't comfortable with that answer knowing that Jacob can't be without fluids due to his Mitochondrial disease. They were able to place an IV, but we all knew it might not last overnight. It was definitely a temporary solution.
To get on surgery's list after 5 pm, you need the attending of the floor and the attending of radiology to make a decision. It was decided Jacob needed the line study tonight. I was so relieved, and happy his team advocated for him. Even if we would receive bad news, I rather wanted to know than not know.
The minute we entered the room, I could feel the coldness from the radiologist. She wasn't happy to know that we didn't know if the needle was in the right spot or not. She was on a time schedule, and this better happen quickly. She could quickly see that the needle wasn't in the right place, which we knew. She couldn't see the port on the film. She wanted the nurse to re-access Jacob right there on the table - as long as the nurse could do it within 5 minutes. I felt the poor nurse was forced to access Jacob without truly taking the time to feel the edges of the port. Instead she was blindly shooting into his chest. With that approach, you are not going to be able to access Jacob. Period. As soon as the radiologist heard that the nurse wasn't able to access Jacob. She shook her shoulders, said there was nothing more she could do, and left the room. Oh man, this was so not patient focused care. I was just thinking she didn't do it to the right family...
As I have had a chance to calm down, stress eating pop corn and crackers all afternoon and evening long, thinking a glass of wine sounds really good, I do believe we have a plan for the night. The charge nurse is going to give it another try to access him before she leaves in the morning. I love how comfortable she is with medi-ports. If she can't get him, they will order another line study for the early part of tomorrow - just in case - we need to schedule a medi-port surgery for tomorrow. It makes me sick to even write that sentence. I just don't even want to think about putting Jacob under anesthesia tomorrow, and what that could entail for him.
Jacob and I are going to try to get some rest. Before 7 am, I am going to know if we have functioning medi-port again or not or if I need to find my inner strength for another day of medi-port chaos.
Send positive thoughts and prayers Jacob's way. He truly needs them tonight.
And just to end tonight on a little more positive note. Jacob and I got featured in this article today about hope and living with mitochondrial disease:
http://www.statnews.com/2016/02/11/mitochondrial-disease-therapies/
Thanks again to all of you checking in with us all day long. We feel your support every step of the way.
Love, Jacob & Maria.
P.S. For all of you who have asked about Sarah. She is still home with a cold, but doing a little better tonight.
Wednesday, February 10, 2016
THINLY STRETCHED
Today was one of those days when shit hits the fan. Literally. I had a boy who desperately needed to poop. His tummy looked like a big nasty balloon. He needed oxygen to breathe due to his enormous stomach. I had a girl in tears from having a high fever, a sore throat, a nose that constantly needed a Kleenex, and three tests on the schedule today. I had a training at 8 am sharp, and needed to consult GI, settle carpool for the day, and get some food and Ibuprofen into Sarah before getting into the mode of training a group of new hires.
As I was on the phone, I could see a call coming in from Children's. When the GI doctor heard Jacob had trouble breathing because of his enormous stomach, there was no more talk about going for an x-ray. The destination was the Emergency Room. The ER typically means a ticket to a bed at Children's, so it's never the answer I want to hear. At the same time, I do know when it's time to pack the bags.
Jacob's nurse Ana and I are a good team getting Jacob out of the house. Today we had a little snag. We couldn't get Jacob downstairs without him literally pooping all over himself, Ana & myself, the floor, the stairs, the stair lift, the walls. There is no joke when this starts. Once in a while we have a visitor in the house when Jacob has one of his explosions, and people simply don't know what to do. We simply didn't know where to start cleaning today. Between Sarah, Ana and myself, we cleaned up round 1. Just for me to lift Jacob up again, and we were back to square one again. We all needed a shower, but the ER just felt a little more urgent. After round 2 was cleaned up, we couldn't do anything but laugh. Nurse Ana wondering "will we be able to get Jacob downstairs to his wheelchair today???" With a big chuck pad shoved into my jeans I was determined to get Jacob down the stairs, poop or no poop, and we made it!
With a slightly less distended stomach, but now a boy on his way to dehydration, we did feel the urgency to get to the ER. To this day, I am not sure what the magical word is but Jacob always has a straight line to the trauma unit as he enters the ED. Today I was happy about that as both the parking lot and the waiting room were crowded. After lots of labs, x-rays, IV fluids and steroids on board, we got the verdict that Jacob has pancreatitis. It's supposed to be really painful. Jacob again surprises me with his extreme resilience and toughness through pure pain. The big balloon stomach was also explained as an ileus (disruptions caused by the failure of peristalsis), hopefully not a bowel obstruction. It is apparently really hard to distinguish between the two on an x-ray. A bowel obstruction requires surgery, something no one wants to put in the same sentence as Jacob. They are fairly confident it's an ileus with Jacob still stooling and having bowel sounds. Let's send some positive thoughts and prayers for an ileus. It sounds like music to my ear compared to bowel obstruction. The treatment for both pancreatitis and ileus are gut rest, so our boy is now on IV fluids to give his stomach some rest. With Jacob perking up a little in the ER, we could avoid the word P-I-C-U and go straight to the 9th floor. A little victory in the middle of medical crisis.
We're on Jacob time once again. We're hoping the gut rest will help him to improve as quickly as he can. I'm so happy we took him in today. I love when my mother instinct is right. This is one of those times, we truly needed Children's and their expertise. Not tomorrow, today. I also simply love Jacob's GI nurse. We were today told that the antibiotics Jacob is on for his stomach can't be ordered from Children's pharmacy. Instead, we needed Jacob's outpatient doctor to prescribe it, call it in, and us bringing it to Children's. Insane! We only had an hour to get it sorted out before the outpatient pharmacy closed. She pulled her strings with the pharmacy, our insurance and Medicaid - and I am sure she worked late - to get this sorted out. It's not the first time, she's pulling through and doing the right thing for our boy.
In the middle of pancreatitis and ileus, it's easy to forget about our girl Sarah who is also feeling miserable today. It's not easy to have a cold in a house dealing with serious illness. I have to admit I feel like a bad mama almost sending Sarah to school with a fever of 101.2 this morning. Sarah in tears competing with her brother's numerous doctors phone calls, emergency room visits and around the clock care.
On a day like today, I can only say I'm thankful we're two in it. Joakim is tonight still sorting out Jacob's medication list with the inpatient team as I'm getting ready to tuck in our Sarah.
Thanks everyone who have been checking in with us today. On to a new day tomorrow. Love, Maria.
As I was on the phone, I could see a call coming in from Children's. When the GI doctor heard Jacob had trouble breathing because of his enormous stomach, there was no more talk about going for an x-ray. The destination was the Emergency Room. The ER typically means a ticket to a bed at Children's, so it's never the answer I want to hear. At the same time, I do know when it's time to pack the bags.
Jacob's nurse Ana and I are a good team getting Jacob out of the house. Today we had a little snag. We couldn't get Jacob downstairs without him literally pooping all over himself, Ana & myself, the floor, the stairs, the stair lift, the walls. There is no joke when this starts. Once in a while we have a visitor in the house when Jacob has one of his explosions, and people simply don't know what to do. We simply didn't know where to start cleaning today. Between Sarah, Ana and myself, we cleaned up round 1. Just for me to lift Jacob up again, and we were back to square one again. We all needed a shower, but the ER just felt a little more urgent. After round 2 was cleaned up, we couldn't do anything but laugh. Nurse Ana wondering "will we be able to get Jacob downstairs to his wheelchair today???" With a big chuck pad shoved into my jeans I was determined to get Jacob down the stairs, poop or no poop, and we made it!
With a slightly less distended stomach, but now a boy on his way to dehydration, we did feel the urgency to get to the ER. To this day, I am not sure what the magical word is but Jacob always has a straight line to the trauma unit as he enters the ED. Today I was happy about that as both the parking lot and the waiting room were crowded. After lots of labs, x-rays, IV fluids and steroids on board, we got the verdict that Jacob has pancreatitis. It's supposed to be really painful. Jacob again surprises me with his extreme resilience and toughness through pure pain. The big balloon stomach was also explained as an ileus (disruptions caused by the failure of peristalsis), hopefully not a bowel obstruction. It is apparently really hard to distinguish between the two on an x-ray. A bowel obstruction requires surgery, something no one wants to put in the same sentence as Jacob. They are fairly confident it's an ileus with Jacob still stooling and having bowel sounds. Let's send some positive thoughts and prayers for an ileus. It sounds like music to my ear compared to bowel obstruction. The treatment for both pancreatitis and ileus are gut rest, so our boy is now on IV fluids to give his stomach some rest. With Jacob perking up a little in the ER, we could avoid the word P-I-C-U and go straight to the 9th floor. A little victory in the middle of medical crisis.
We're on Jacob time once again. We're hoping the gut rest will help him to improve as quickly as he can. I'm so happy we took him in today. I love when my mother instinct is right. This is one of those times, we truly needed Children's and their expertise. Not tomorrow, today. I also simply love Jacob's GI nurse. We were today told that the antibiotics Jacob is on for his stomach can't be ordered from Children's pharmacy. Instead, we needed Jacob's outpatient doctor to prescribe it, call it in, and us bringing it to Children's. Insane! We only had an hour to get it sorted out before the outpatient pharmacy closed. She pulled her strings with the pharmacy, our insurance and Medicaid - and I am sure she worked late - to get this sorted out. It's not the first time, she's pulling through and doing the right thing for our boy.
In the middle of pancreatitis and ileus, it's easy to forget about our girl Sarah who is also feeling miserable today. It's not easy to have a cold in a house dealing with serious illness. I have to admit I feel like a bad mama almost sending Sarah to school with a fever of 101.2 this morning. Sarah in tears competing with her brother's numerous doctors phone calls, emergency room visits and around the clock care.
On a day like today, I can only say I'm thankful we're two in it. Joakim is tonight still sorting out Jacob's medication list with the inpatient team as I'm getting ready to tuck in our Sarah.
Thanks everyone who have been checking in with us today. On to a new day tomorrow. Love, Maria.
Tuesday, February 2, 2016
DOUBLE DIGIT
It's me. I turned double digit on Sunday! Who would have thought I would get to see my 10th birthday?! It sure was a special weekend, and a celebration of my life.
On Friday afternoon, Icing Smiles delivered my birthday cake! The best birthday cake ever for a Superhero party! It wasn't just a beautiful cake, it was also the most delicious cake. For many this was the best tasting cake they had ever had. The baker's daughter goes to my school, so she knew me already. That was a little special.
On Saturday, it was time for my birthday party! I had told mom I wanted to be Superman. I was really excited to celebrate my birthday with friends and family. Several of my classmates came to my party. Grandpa was our special guest this year.
We had a pizza buffet for our guests. This is something we have done for the last couple of years, and it's liked by everyone.
Sis was in charge of Superhero crafts! I made my own superheros and my own superhero mask. She had made the best Superhero bingo, but she completely forgot about it. She was annoyed when she realized it late at night. Next year!
After pizza and crafts, it was time for my center piece, the SUPERHERO CAKE! Mom had a special gift for me this year. She hold a special double digit speech for me. I'll share it with you below.
I was tired at the end of my party. I loved when my friend Liam decided to start reading my Star wars book to me. It was the perfect ending to my party.
Sunday morning, we woke up to a beautiful winter morning. We had a thick layer of snow on the trees and a little fog. Sarah had an early volleyball tournament, so mom and I had the day to ourselves. We took it easy all day. We read books and cuddled.
My friends Selina and Leandra also FaceTimed us from their vacation in Italy. It was so great to talk and see them all thanks to technology! They gave me the absolute best gift for my birthday. They will come and visit me this summer. I was so happy to hear the news.
When sis, dad and grandpa were back home, we had a nice dinner together, more cake and more gifts! Look at my new very large bean bag!
It was a very special birthday weekend. I was so happy to get to spend this day feeling happy and healthy with family and friends.
Get your kleenex, and read what my mom wrote me:
On Friday afternoon, Icing Smiles delivered my birthday cake! The best birthday cake ever for a Superhero party! It wasn't just a beautiful cake, it was also the most delicious cake. For many this was the best tasting cake they had ever had. The baker's daughter goes to my school, so she knew me already. That was a little special.
On Saturday, it was time for my birthday party! I had told mom I wanted to be Superman. I was really excited to celebrate my birthday with friends and family. Several of my classmates came to my party. Grandpa was our special guest this year.
We had a pizza buffet for our guests. This is something we have done for the last couple of years, and it's liked by everyone.
Sis was in charge of Superhero crafts! I made my own superheros and my own superhero mask. She had made the best Superhero bingo, but she completely forgot about it. She was annoyed when she realized it late at night. Next year!
After pizza and crafts, it was time for my center piece, the SUPERHERO CAKE! Mom had a special gift for me this year. She hold a special double digit speech for me. I'll share it with you below.
Sunday morning, we woke up to a beautiful winter morning. We had a thick layer of snow on the trees and a little fog. Sarah had an early volleyball tournament, so mom and I had the day to ourselves. We took it easy all day. We read books and cuddled.
My friends Selina and Leandra also FaceTimed us from their vacation in Italy. It was so great to talk and see them all thanks to technology! They gave me the absolute best gift for my birthday. They will come and visit me this summer. I was so happy to hear the news.
When sis, dad and grandpa were back home, we had a nice dinner together, more cake and more gifts! Look at my new very large bean bag!
It was a very special birthday weekend. I was so happy to get to spend this day feeling happy and healthy with family and friends.
Get your kleenex, and read what my mom wrote me:
Dear Jacob,
You have no idea how incredibly happy and grateful I am to
have been your mom for 10 wonderful years.
I have been told by numerous doctors that today wouldn’t happen. You
decided differently.
You sure have kept me on my toes. It started already in
uterus. My ob/gyn told me you wouldn’t survive in uterus. I had to prepare
myself to miscarry. Against all odds, you decided to beat all odds and continue
to grow in uterus and be a full-term baby at 40 weeks.
At 4,5 months we were told there was nothing more to do. We
should prepare ourselves for the worst. I remember the incredible pain. I fell
in love with you the moment I knew you were in my stomach, so the thought that I
would lose you at 4,5 months just didn’t seem right. That is when Joakim and I
had to grow up. We had to very quickly become very medical savvy and being your
advocates despite never even heard of the diseases that were thrown at us. I
remember googling inborn metabolic diseases. We knew you were worth every
fight, your smile and perseverance made us going. You were our little baby boy.
Fast forward to your third year of life. We got to fully
understand what it means to live with mitochondrial disease. We got to see what
it means to have a mitochondrial crash. We more than once got to see you fight
for your life. We got a crash course in emergency and intensive care. We feared
for your life more than once that year. I remember sitting with you in the
trauma unit in the Emergency Room on a Saturday night, and your brown eyes told me that we would be ok. To this day,
I always look you in the eyes to make sure we are both ok to fight the good
fight.
Grandpa is here today to celebrate your 10th
birthday. He was also here for your 4th birthday. It was the most
depressing birthday. Your medical team had told us you wouldn’t see your 4th
birthday. Your immune system was at an all time low, grandpa and us celebrated
with you. No friends or party. I am not sure how many times I had to try to
keep my tears away that day. On top of it, we had the worst social worker from
your hospice program join us to do clay hand prints and she had absolutely no
clue how to do it! It was disastrous all around!
Despite a depressing birthday, you once again decided to
beat all odds. You had no interest in making your 4th birthday your
last. I will never forget the first spring walk we did together. You were still
so very weak, but that is the day I knew you had decided to continue living.
That is one of the most life changing moment in my life. Thank you Jacob for
that gift, the gift of living in the moment and to realize what is truly
important in life. I am not sure I would have found that path on my own. When I
know you only have today, I can find so much joy from simply giving you a bath,
from reading you a story, from communicating with you on your talker, from
cuddling with you and giving you endless kisses. My favorite is to give you a
back massage, you so enjoy.
Last summer, we were told once again you didn’t have much
time left to live. We were told to prepare ourselves once again to lose you. I
was devastated, and so were your dad and sister. After 10 years with you, my
skin is a little thicker and I am little wiser. I realized that it truly
doesn’t matter what the doctors predict. YOU, my sweet lovely boy, ARE IN
CHARGE. You have no idea how much happiness you give us every single day. A
decade with you, sweet Jacob, is so worth celebrating. So with that, let’s
toast to Jacob’s life and OUR superhero!
We love you so very much.
Mom.
Thursday, January 21, 2016
AN EARLY BIRTHDAY CELEBRATION
Yesterday I got to visit with my class. I brought donuts to celebrate my birthday, and the whole class sang for me. My classmates all got to take turns telling me how awesome I am. They think I am a kind soul and have a good personality. They think I have courage. They love when I come to school and when they get to Skype with me. They want me to continue loving my Minions, and I was also called the most important classmate! They never ever see my disabilities, only my abilities. How awesome is that.
After my birthday celebration, it was time to head downtown and listen to the Colorado Symphony Orchestra. This has been on my bucket list. I am so happy I got to go on a field trip and listen to live classical music. We also got to learn about the different instruments in the orchestra. I loved every minute of it. Riding the school bus with my friends was a lot of fun too.
I was so happy to get out of the house! Look at my big smile as we got back to the house again.
Now we have a countdown to my big 10!
Love, Jacob.
After my birthday celebration, it was time to head downtown and listen to the Colorado Symphony Orchestra. This has been on my bucket list. I am so happy I got to go on a field trip and listen to live classical music. We also got to learn about the different instruments in the orchestra. I loved every minute of it. Riding the school bus with my friends was a lot of fun too.
Listening to music.
I also got to hang with my friend CJ and my nurse Ana.
I was so happy to get out of the house! Look at my big smile as we got back to the house again.
Now we have a countdown to my big 10!
Love, Jacob.
Sunday, January 17, 2016
REMEMBER A LITTLE BOY
Yesterday morning I found myself in my car on the way to
yet a memorial service. Funeral number 3 in 2 months. This time for little Luke. Luke had a short life, only 16 months long. Sitting in
the church in Longmont, his life was nothing but short. The church was filled
with family and friends whose lives he had touched. His smiling face looking down at
all us from enlarged photographs. Dad who kept it together every time I visited them in the PICU,
but couldn’t hold his tears back any longer. His voice was loosing it as he was talking about the pain he feels from all the dreams he had for his son that will never happen here on earth. Aunt Chandra who so eloquently shared her letter to Luke's brother, so he can always remember his baby brother.
As I was driving towards the snow covered mountains and the church, I felt numb. I felt numb to face grief once again. The Mito monster once again cut a life too short, and a family has to find their way back to life despite their hearts bleeding for their beautiful, so very perfect baby boy.
I knew Luke's aunt long before I knew Luke. Mrs. Chandra was Jacob's teacher for several years, and we love her. She totally gets Jacob. When she texted me a year ago to ask if I would meet her sister, since the doctors suspected her son to have a mitochondrial disease. I welcomed them in to my home, and the rest is history today.
10 years with Jacob has given me many opportunities to think about how Jacob's life possibly can end. I am sincerely hoping Jacob will be in charge when his day come. Reality is that it's not always the case when you have a medically complex child. Many times parents are faced with the most heart wrenching decisions there are - to decide when the right time is to let go. This is in my opinion the absolute worst. How can you ever let your child go? This family was faced with this very difficult decision, and with grace and love and tears they made the decision no parent should have to make. I am forever grateful they let me in on their journey, and that I got to squeeze Luke's little hand and feeling him squeezing it back. I think it was his sign to say he'll be ok.
Today I spent a whole day watching my girl play volleyball. It gave me great joy. A complete 180 from a memorial service of a little boy yesterday. And as life goes on and we get sucked in to day-to-day routines, let's always make room for our friends who have to work hard to find joy again. Be that friend who shows up. Be present. And remember Luke, a happy boy loving his balloons.
Love, Maria.
Tuesday, January 12, 2016
TO A HEALTHY LIVER
Tonight as I was cleaning up the kitchen after dinner, Jacob was giving his fart blaster another go. Each fart sounded a little louder, a little clearer tonight. I felt so present with Jacob, and every time he hit his switch with his head, I felt happiness. Happiness that Jacob's liver values are back to normal. Jacob's liver looks completely healthy on his MRI scan. Jacob's liver doctor who has grown on us in the last six months, was suggesting that we don't need to come back and see him. He will continue to monitor Jacob's labs through his GI doctor, but no need for massive loads of labs and doctors appointments any longer. Dr. S. is not completely sure why one of Jacob's liver values was so off this past summer. His best guess is that Jacob had an infection we didn't discover. That would also explain the seizures we saw at the same time. Jacob very seldom has clinical seizures without a reason.
Living with mitochondrial disease, I know Jacob's health can change at any time. But today, I will stop and cherish the moment of a healthy liver.
To a healthy liver! Love, Maria.
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