There are times I think back on our hardest hospital stays. I often wonder how we did it, and how I will do it again when the time comes. The answer is simple. There is no choice. There is just not a chance Jacob will ever be alone in this. We are doing the smaller part of the bargain as our boy fights for his life.
We're on day 10 in the hospital, and it hasn't been an easy stay. Jacob was so sick when we got in, me always fearing this is going to be the time he will not win the battle. Jacob has also added diagnosis after diagnosis over the years, which makes treatment harder. If you do one thing, it will impact another organ or diagnosis of our boy. Jacob is getting so much sicker when his own body can't produce adrenaline. Dealing with steroid dependency is not something I wish anyone. I know now why GI was so hesitant to start steroids on Jacob two years ago. They knew the road we were going down, and I am sure their worst case scenario is where we are now. We will never get off steroids.
The good news is that we're out of the PICU. We're on the 9th floor, and I do appreciate that I can close the door as I am cuddling up with Jacob in bed. We have our own toilet and shower. Being in the fish tank on display for 8 days is a long time, especially when two kids die on the same night. It hit me hard this time.
The other good news is that Jacob's EEG is unchanged. Unchanged doesn't mean good. His epileptologist in fact called his EEG "ugly". Jacob's brain spikes at all times. What it means for us is that we should not chase Jacob's lethargy as seizures. A big sigh of relief. It was very hard to see Jacob's wrapped head and the very active screen of Jacob's brain. I have seen a few too many EEGs to know Jacob's is not good. For 24 hours I was trying to suppress my worry about his EEG possibly being worse. The word "unchanged" was like music to my ears, and as I was driving home the tears of relief and sadness came.
Today we had another turn for the worse. Yesterday, Jacob was moved to oral steroids and the dose was taken down to his new maintenance dose. Hello colitis!!! Jacob is tonight back on a stress dose of steroids, and we're waiting to talk to GI in the morning about a plan. In the meantime, we are changing diapers like there is no tomorrow. In the middle of Jacob stooling, he actually looks really good. He is alert, and very much looks his handsome self again. Did I say this happened after we were told we were going home today and our car was packed with all our stuff? It sure is an emotional roller coaster.
Tomorrow is going to be crucial. It is all going to depend on how well the GI attending knows us, and how comfortable he is going to be to a) jack up the steroids without lab results being back and b) let us manage this from home. Where we are tonight would not be a good place to go home.
I feel as if we relive our hospital stay from two years ago. Jacob came in very sick, was very lethargic, all labs were negative - and then the colitis came! It is as if Jacob gets really, really sick before the stool shows up. I also think the stress dosing in the PICU masked the colitis.
We're four days away from Thanksgiving. We would love to be home with our boy in time for turkey.
Love, Maria.
Saturday, November 22, 2014
Tuesday, November 18, 2014
TIME FOR AN UPDATE
We're on day 6 in the PICU, and it has been a long six days. When we got here on Thursday, the PICU was deserted. Now it is almost full. That means we get to witness many sick kids. I also don't know how many room neighbors Jacob has had in the last week. We're the ones staying put, the other kids are moving out of the ICU.
After six days, we have had too little sleep, too much junk food, too little time at home, but very few answers to what is truly is going on with Jacob.
We were told Jacob had sepsis on Thursday. Many thought he had had a stroke, I found out later. Nothing has grown out of the cultures, so there is no source for the sepsis. Did Jacob experience an adrenaline shock, since the symptoms are very similar? Low blood pressures, low body temperature, and lethargy.
No matter what is going on, Jacob's body has been under extreme stress in the last week. Since Jacob's adrenal glands don't work, Jacob needs to be stress dosed. This means high doses of IV steroids. Endocrinology is following Jacob closely, and we will go home on a new steroid plan with a slow wean plan to make sure Jacob doesn't end right back here again. We're also going home with a glucose meter, so we can check his glucose if he shows signs of being lethargic. We're getting trained to poke our little guy tomorrow morning.
And then there is that enlarged right pupil that worries everyone despite an unchanged CT scan of Jacob's brain. Everyone is waiting for Dr. C to come and give her view on Jacob's lethargy and pupil. The question everyone dances around is if Jacob's mental status has changed? There are definitely times throughout the day when Jacob is lethargic or simply wants to sleep. Jacob is not completely himself.
Despite everything going on, I do think we should try to get our boy home as soon as we can and the PICU team agrees. They want to move him to oral steroids tomorrow and see how Jacob responds to that. Endocrine has a suspicion he is not absorbing all his steroids, since he is requiring higher doses than his body weight should need. They want to see how he does tomorrow, all toes and fingers crossed, maybe home on Thursday? After two weekends in the PICU, that sounds like music to my ears.
For now, Jacob and I are cuddled up in bed watching The Voice.. We're hoping for a good night nurse who will let us sleep a little tonight...
Thanks again for all the visits, messages, food and gifts. We never ever feel alone.
Love, Maria.
After six days, we have had too little sleep, too much junk food, too little time at home, but very few answers to what is truly is going on with Jacob.
We were told Jacob had sepsis on Thursday. Many thought he had had a stroke, I found out later. Nothing has grown out of the cultures, so there is no source for the sepsis. Did Jacob experience an adrenaline shock, since the symptoms are very similar? Low blood pressures, low body temperature, and lethargy.
No matter what is going on, Jacob's body has been under extreme stress in the last week. Since Jacob's adrenal glands don't work, Jacob needs to be stress dosed. This means high doses of IV steroids. Endocrinology is following Jacob closely, and we will go home on a new steroid plan with a slow wean plan to make sure Jacob doesn't end right back here again. We're also going home with a glucose meter, so we can check his glucose if he shows signs of being lethargic. We're getting trained to poke our little guy tomorrow morning.
And then there is that enlarged right pupil that worries everyone despite an unchanged CT scan of Jacob's brain. Everyone is waiting for Dr. C to come and give her view on Jacob's lethargy and pupil. The question everyone dances around is if Jacob's mental status has changed? There are definitely times throughout the day when Jacob is lethargic or simply wants to sleep. Jacob is not completely himself.
Despite everything going on, I do think we should try to get our boy home as soon as we can and the PICU team agrees. They want to move him to oral steroids tomorrow and see how Jacob responds to that. Endocrine has a suspicion he is not absorbing all his steroids, since he is requiring higher doses than his body weight should need. They want to see how he does tomorrow, all toes and fingers crossed, maybe home on Thursday? After two weekends in the PICU, that sounds like music to my ears.
For now, Jacob and I are cuddled up in bed watching The Voice.. We're hoping for a good night nurse who will let us sleep a little tonight...
Thanks again for all the visits, messages, food and gifts. We never ever feel alone.
Love, Maria.
Friday, November 14, 2014
24 HOURS INTO OUR PICU STAY
It is a good thing, but I had forgotten how busy it is when you have a sick child in the PICU! All day we have had members of the PICU team, Jacob's specialty doctors and nurses running in and out of his room. I can't believe it is dinner time already.
Jacob had a rough night. They knew they needed more access than Jacob's medi-port for all his medications and IV fluids. They were able to get an IV line, but fairly quickly it got infiltrated. Jacob's arm is today swollen and bruised. In the end, they were able to get a central line in his neck.
Jacob's blood pressures continued to be low overnight, and he was started on blood pressure medication yesterday. As it continued to dip, they wanted an arterial line so they could get blood pressure readings at all times. I am so happy I wasn't here because our boy was poked for over an hour with no arterial line as a result. They simply had to give up...Today, they have looked again with ultrasound for a possible arterial line, but for now they are holding off.
Sepsis is confirmed, but we still don't know what is the source of his sepsis. We know it is not respiratory. The big question is if it is GI related. We know Jacob's tummy can do all kinds of things to him. He doesn't have signs of colitis at this time. GI is taking another x-ray tonight to get a better look at his gut.
All day, Jacob has been very sleepy and lethargic. He is on heavy duty antibiotics, and he is needing Benadryl every 6 hours due to an allergy to one of his antibiotics. Benadryl is not helping Jacob to stay awake. Jacob is finally holding his temperature a little bit better. His blood pressures continue to be on the low side, but for now he is stable with medication. He is actually quite awake right now, and watching cartoons on his IPad.
The team tells us we need to give Jacob time to heal. So for now we have moved in to the PICU once again.
For a while I have wanted to post this beautiful letter from nurse Gemma to Jacob. I thought you might enjoy it as you're thinking about our boy in the PICU tonight.
My Handsome Jacob,
I don't even know where to start. February 2010 will forever mark the time you stole my heart. I had no idea how I was going to take care of you, but I knew I needed to figure it out. My first days with you, I cleaned poop off the carpet, ran up the stairs for oxygen because you turned blue (I was suctioning you downstairs without it), gave you your meds in your feeding bag, called your mom because you were crying, and repeatedly asked your dad if your movements were normal. Somehow Jacob, we figured it out. At some point we fell into synch. I understood you, just as much as you understood me.
Jacob, you have not only made me the nurse I am today, you have helped to shape me as a person. I never really knew what it was for someone to need another until I met you. Somehow I felt like I was supposed to be with you. I first thought it was because you needed me medically. Truth is, I needed you to help me finish "growing up". I learned what it was to care for someone unselfishly. I learned what it was to love someone whole heartedly. I learned how to appreciate every day we are given.
I can honestly say that in my entire life, I have never met someone as strong as you. Immediately, I knew you were a fighter. You are by far the definition of bravery. Despite what you have been through, you have a passion for life, and an incredible love for others. I have watched you claim the hearts of people around you time and time again. Your pure spirit and your big heart are so hard to resist.
Taking you to school has always been the highlight for me. Answering questions like "Are his legs broken?", "How does he eat?", or "What happened to him?" has always been interesting. I have enjoyed watching your classmates help you color, make choices, read, or even just play. You've been a dinosaur, a camper, a doctor, and most importantly...a friend. I've loved watching kids light up with excitement when they see you walk through the door. You have taught these kids rue compassion, and the ability to see past a disability. If everyone had a Jacob in their classroom the world would be a better place.
Jacob, I can't thank you enough for letting me be a part of your life. I am not saying good-bye. I am simply moving aside to let you teach someone else what you have taught me. I am going to miss you bossing me around, your little scrunchy-faced smile, and talking to you. I guess it means I'm going to have to come back often. I want Derek to grow up knowing my Jacob. So Jacob, I hope it's ok with you, but I will visit and check in often. I am never far away.
So, Jacob be good to your nurses. Try to say please even when you're being bossy, and don't forget to tell mommy and daddy you love them once in a while.
Always on Team Jacob,
Gemma.
Jacob had a rough night. They knew they needed more access than Jacob's medi-port for all his medications and IV fluids. They were able to get an IV line, but fairly quickly it got infiltrated. Jacob's arm is today swollen and bruised. In the end, they were able to get a central line in his neck.
Jacob's blood pressures continued to be low overnight, and he was started on blood pressure medication yesterday. As it continued to dip, they wanted an arterial line so they could get blood pressure readings at all times. I am so happy I wasn't here because our boy was poked for over an hour with no arterial line as a result. They simply had to give up...Today, they have looked again with ultrasound for a possible arterial line, but for now they are holding off.
Sepsis is confirmed, but we still don't know what is the source of his sepsis. We know it is not respiratory. The big question is if it is GI related. We know Jacob's tummy can do all kinds of things to him. He doesn't have signs of colitis at this time. GI is taking another x-ray tonight to get a better look at his gut.
All day, Jacob has been very sleepy and lethargic. He is on heavy duty antibiotics, and he is needing Benadryl every 6 hours due to an allergy to one of his antibiotics. Benadryl is not helping Jacob to stay awake. Jacob is finally holding his temperature a little bit better. His blood pressures continue to be on the low side, but for now he is stable with medication. He is actually quite awake right now, and watching cartoons on his IPad.
The team tells us we need to give Jacob time to heal. So for now we have moved in to the PICU once again.
For a while I have wanted to post this beautiful letter from nurse Gemma to Jacob. I thought you might enjoy it as you're thinking about our boy in the PICU tonight.
My Handsome Jacob,
I don't even know where to start. February 2010 will forever mark the time you stole my heart. I had no idea how I was going to take care of you, but I knew I needed to figure it out. My first days with you, I cleaned poop off the carpet, ran up the stairs for oxygen because you turned blue (I was suctioning you downstairs without it), gave you your meds in your feeding bag, called your mom because you were crying, and repeatedly asked your dad if your movements were normal. Somehow Jacob, we figured it out. At some point we fell into synch. I understood you, just as much as you understood me.
Jacob, you have not only made me the nurse I am today, you have helped to shape me as a person. I never really knew what it was for someone to need another until I met you. Somehow I felt like I was supposed to be with you. I first thought it was because you needed me medically. Truth is, I needed you to help me finish "growing up". I learned what it was to care for someone unselfishly. I learned what it was to love someone whole heartedly. I learned how to appreciate every day we are given.
I can honestly say that in my entire life, I have never met someone as strong as you. Immediately, I knew you were a fighter. You are by far the definition of bravery. Despite what you have been through, you have a passion for life, and an incredible love for others. I have watched you claim the hearts of people around you time and time again. Your pure spirit and your big heart are so hard to resist.
Taking you to school has always been the highlight for me. Answering questions like "Are his legs broken?", "How does he eat?", or "What happened to him?" has always been interesting. I have enjoyed watching your classmates help you color, make choices, read, or even just play. You've been a dinosaur, a camper, a doctor, and most importantly...a friend. I've loved watching kids light up with excitement when they see you walk through the door. You have taught these kids rue compassion, and the ability to see past a disability. If everyone had a Jacob in their classroom the world would be a better place.
Jacob, I can't thank you enough for letting me be a part of your life. I am not saying good-bye. I am simply moving aside to let you teach someone else what you have taught me. I am going to miss you bossing me around, your little scrunchy-faced smile, and talking to you. I guess it means I'm going to have to come back often. I want Derek to grow up knowing my Jacob. So Jacob, I hope it's ok with you, but I will visit and check in often. I am never far away.
So, Jacob be good to your nurses. Try to say please even when you're being bossy, and don't forget to tell mommy and daddy you love them once in a while.
Always on Team Jacob,
Gemma.
Thursday, November 13, 2014
A SICK BOY TONIGHT
We got home from Children's on Sunday. Unfortunately, Jacob hasn't been himself since we got home. He has been very sleepy and lethargic most of the week. Yesterday, Jacob started to have a hard time keeping his temperature up. We have been talking to Dr. E. and Dr. C. throughout the week to run labs, and try to figure out what was going on with our boy. Today we had a doctor's appointment with Dr. E.
Dr. E. pretty quickly diagnosed Jacob with sepsis. It is the one diagnosis you don't want to ever hear. They were also concerned about one of Jacob's pupil being enlarged and his blood values being off believing Jacob possibly had a bleed in his brain. A CT scan of his brain was ordered as we were transferred to the ED. I know Jacob is really sick when Dr. E. drops everything for Jacob. That is what she did today. She took him over to the ED herself (getting instructions from the nurses on how to steer the bed), and she stayed with him the whole time he was in the ED. She also feels extra responsible when she knows Dr. C. is out of town. They are a good pair taking care of our boy.
Jacob's low body temperature and low blood pressures are both signs of sepsis and adrenaline shock. They don't know what they are treating, so they are treating both. The heavy guns antibiotics are on board, stress steroids are on board, and Jacob is needing medicine to keep his blood pressure up.
He doesn't have enough access tonight with only his medi-port. They finally got an IV line in in addition to his medi-port, but the team is already talking about putting in a central line so they also can measure his blood pressure at all times. We have been here before. It is just so long ago.
I am worried about our boy tonight. Him not holding his own body temperature and blood pressure are not good signs. Once again I am holding on to hope, hope that my strong brave warrior boy is ready for this fight once again. Our son Jacob.
Thanks again for the outpour of love and support. Before I knew it, Sarah was at a friend's house where she is completely comfortable.
Friends and family always wonder what they can do for Jacob in times of crisis. Lit a candle for our boy tonight, and send positive thoughts, prayers and juju his way. He needs it right now.
Love, Maria.
Dr. E. pretty quickly diagnosed Jacob with sepsis. It is the one diagnosis you don't want to ever hear. They were also concerned about one of Jacob's pupil being enlarged and his blood values being off believing Jacob possibly had a bleed in his brain. A CT scan of his brain was ordered as we were transferred to the ED. I know Jacob is really sick when Dr. E. drops everything for Jacob. That is what she did today. She took him over to the ED herself (getting instructions from the nurses on how to steer the bed), and she stayed with him the whole time he was in the ED. She also feels extra responsible when she knows Dr. C. is out of town. They are a good pair taking care of our boy.
Jacob's low body temperature and low blood pressures are both signs of sepsis and adrenaline shock. They don't know what they are treating, so they are treating both. The heavy guns antibiotics are on board, stress steroids are on board, and Jacob is needing medicine to keep his blood pressure up.
He doesn't have enough access tonight with only his medi-port. They finally got an IV line in in addition to his medi-port, but the team is already talking about putting in a central line so they also can measure his blood pressure at all times. We have been here before. It is just so long ago.
I am worried about our boy tonight. Him not holding his own body temperature and blood pressure are not good signs. Once again I am holding on to hope, hope that my strong brave warrior boy is ready for this fight once again. Our son Jacob.
Thanks again for the outpour of love and support. Before I knew it, Sarah was at a friend's house where she is completely comfortable.
Friends and family always wonder what they can do for Jacob in times of crisis. Lit a candle for our boy tonight, and send positive thoughts, prayers and juju his way. He needs it right now.
Love, Maria.
Saturday, November 8, 2014
READY FOR A NEW WEEK!
It is Saturday evening. Dinner, a glass of wine and a movie sound pretty good to me right now. I better not stay focused on that thought for too long, since it is not going to happen. This Saturday evening will be spent up on the 9th floor at Children's together with Jacob. We just got transferred from the PICU, so I know it is going to be a long night telling our story multiple times, and making sure all new medical orders will happen tonight. I also have a boy who has slept a lot today, so I am sure Jacob is ready for a party, especially with two nurses on board tonight. I don't see a lot of sleep in the near future.
Jacob decided to break in nurse Shereen right away (and she did excellent). Yesterday his tummy was not agreeing with him, and Jacob was in obvious pain. Pain that throw Jacob into a long seizure. He decided to come out for a little bit, and then he went into status epilepticus. It was time to call 911. Jacob's breathing was definitely shallow from all the medications, and it sure scared the paramedics. They bagged him in the ambulance, and took him to the nearest hospital. It is funny how you react in crisis. It was not until I was sitting in the car late at night that I realized that they had bagged him all the way to the hospital. I had my eyes on the bag the whole time, but I couldn't take it in. The first question when we got to the hospital was if I wanted them to intubate Jacob. Gosh no! I told them if they had concerns about Jacob's breathing, we should get a bi-pap on him right away. The bi-pap did its' job.
Jacob went downhill at Good Samaritan. His blood pressures and heart rate dropped and he couldn't hold his body temperature. I knew we were dealing with adrenaline insufficiency once again. We got Hydrocortisone on board, and things started to look up again. Dr. C. talked to the attending, and we got a plan in place for his seizures.
I know some of you are going to appreciate this. My throat was so dry after talking non-stop to doctors and nurses, so when I finally was able to grab my water bottle I didn't take a close look and instead took a big zip of water. To my surprise, I was drinking Jacob's formula with extra fiber, and it sure wasn't tasty! We always put his feed in a water bottle for school, so I simply grabbed the wrong bottle. I am so happy our boy doesn't have to taste that thing! It sure gave the nurse a good laugh.
After many hours at Good Samaritan, we finally got transferred to Children's. Once settled in the PICU, we felt we finally had a plan in place. We were told by the attending that they wanted Jacob out of the PICU asap due to the enterovirus still going around. This nasty virus has landed many healthy children in the intensive care unit with breathing and neurological issues.
24 hours after we arrived at the PICU we are now up on the 9th floor. It must be one of our quickest PICU stays in history. 24 hours later we know that his tummy caused the seizures. His tummy was as large as a balloon both yesterday and today. We're back on antibiotics for his gut, a higher dose of steroids, and watching his stool. Both Joakim and I are thinking we are nearing a colitis flare up. Luckily, his GI doc is attending this weekend so hopefully we can come up with a plan before we leave.
This sure has been a long week. We started out the week with wishing Gemma farewell. Joakim and I got to sneak away to Breckenridge and spend two relaxing days together. We had a new night nurse start with some bumps in the road. We had a fun successful fundraiser at Whimsy Paint & Sip for Miracles for Mito. Thanks to all of you who came out and painted with us.
The highlight of the week was to see Jacob perform in his first school musical. The 2nd graders performed famous fables, and Jacob got to present the morale of each fable. It was a proud parent moment despite Jacob deciding to sleep through the whole performance! One of his classmates was concerned about Jacob sleeping and hoping he would wake up, so he could "stay on task". Thanks to his teacher, Jacob was able to still do his part. And yes, way too many pictures were taken...
.
And guess who came to watch the big performance? Jacob had no idea! He just wanted to sleep...
We're hoping we are soon home again, and we're hoping we're wrong about Jacob starting a colitis flare up. Time will tell.
Stay tuned. Love, Maria.
Jacob decided to break in nurse Shereen right away (and she did excellent). Yesterday his tummy was not agreeing with him, and Jacob was in obvious pain. Pain that throw Jacob into a long seizure. He decided to come out for a little bit, and then he went into status epilepticus. It was time to call 911. Jacob's breathing was definitely shallow from all the medications, and it sure scared the paramedics. They bagged him in the ambulance, and took him to the nearest hospital. It is funny how you react in crisis. It was not until I was sitting in the car late at night that I realized that they had bagged him all the way to the hospital. I had my eyes on the bag the whole time, but I couldn't take it in. The first question when we got to the hospital was if I wanted them to intubate Jacob. Gosh no! I told them if they had concerns about Jacob's breathing, we should get a bi-pap on him right away. The bi-pap did its' job.
Jacob went downhill at Good Samaritan. His blood pressures and heart rate dropped and he couldn't hold his body temperature. I knew we were dealing with adrenaline insufficiency once again. We got Hydrocortisone on board, and things started to look up again. Dr. C. talked to the attending, and we got a plan in place for his seizures.
I know some of you are going to appreciate this. My throat was so dry after talking non-stop to doctors and nurses, so when I finally was able to grab my water bottle I didn't take a close look and instead took a big zip of water. To my surprise, I was drinking Jacob's formula with extra fiber, and it sure wasn't tasty! We always put his feed in a water bottle for school, so I simply grabbed the wrong bottle. I am so happy our boy doesn't have to taste that thing! It sure gave the nurse a good laugh.
After many hours at Good Samaritan, we finally got transferred to Children's. Once settled in the PICU, we felt we finally had a plan in place. We were told by the attending that they wanted Jacob out of the PICU asap due to the enterovirus still going around. This nasty virus has landed many healthy children in the intensive care unit with breathing and neurological issues.
24 hours after we arrived at the PICU we are now up on the 9th floor. It must be one of our quickest PICU stays in history. 24 hours later we know that his tummy caused the seizures. His tummy was as large as a balloon both yesterday and today. We're back on antibiotics for his gut, a higher dose of steroids, and watching his stool. Both Joakim and I are thinking we are nearing a colitis flare up. Luckily, his GI doc is attending this weekend so hopefully we can come up with a plan before we leave.
This sure has been a long week. We started out the week with wishing Gemma farewell. Joakim and I got to sneak away to Breckenridge and spend two relaxing days together. We had a new night nurse start with some bumps in the road. We had a fun successful fundraiser at Whimsy Paint & Sip for Miracles for Mito. Thanks to all of you who came out and painted with us.
The highlight of the week was to see Jacob perform in his first school musical. The 2nd graders performed famous fables, and Jacob got to present the morale of each fable. It was a proud parent moment despite Jacob deciding to sleep through the whole performance! One of his classmates was concerned about Jacob sleeping and hoping he would wake up, so he could "stay on task". Thanks to his teacher, Jacob was able to still do his part. And yes, way too many pictures were taken...
.And guess who came to watch the big performance? Jacob had no idea! He just wanted to sleep...
We're hoping we are soon home again, and we're hoping we're wrong about Jacob starting a colitis flare up. Time will tell.
Stay tuned. Love, Maria.
Wednesday, November 5, 2014
CHANGE IS IN THE AIR
In December of 2009, we came home with Jacob after a 60 days stay at Children's. We didn't know if he would make it that winter. Jacob's CPR directive was placed in the kitchen drawer, just in case we needed it. We were a family in crisis. This is the time nurse Gemma joined our family. She was a new grad. She was giving one hour of training, and then off she went to take care of our boy. I remember being at work her first day on the job. Joakim was working at home to keep an eye on her. I remember skyping Joakim asking how things were going. He said she was doing well. I gave out a sigh of relief.
I have been told that Gemma stained our carpet when she started, I have heard that she didn't know how to give Jacob his meds via the g-tube and simply mixed them with his formula in his feeding bag. I vaguely remember that we all sucked at deep suctioning Jacob. The funny thing is that I don't remember any of this. What I remember is a young newly graduated nurse who gave it her all to get to know Jacob and all his care. She never ever scared away from anything she had to learn and do. I will never forget us having to prime our own IV antibiotics and give them to Jacob with the help of gravity. It is just not something you should do at home, but we did!
Gemma has a big heart, and she sure gave Jacob her whole heart. She always wanted the absolute best for Jacob from making sure he was always properly dressed (he is her handsome), always making sure Jacob was pushed in therapies, always included in all school activities, enabling Jacob to make friends, making sure he always had his own special gifts for his family for any special occasion. They created their own times of crafting, listening to Disney radio, reading endless books, watching movies, and going for long walks.
Gemma gave Joakim and I normalcy in our not so normal lives. Over the years, we learned to trust Gemma as much as we trust ourselves with our boy. We could come and go in our home always knowing Jacob was in excellent care. It gave us the freedom to participate in Sarah's life, and making sure she got the attention she needed. One time, we were all at a wedding up in Evergreen with no cell phone service. Joakim called Gemma on the land line to make sure everything was fine. We found out she was at Children's with Jacob, since he had gotten sick and needed the PICU. Every time Jacob was in the hospital, we knew Gemma would make a special visit to see our boy.
Gemma was never "just" nurse Gemma. She became part of our family. Sarah adores Gemma. She loved hanging on the couch in Jacob's room while Gemma was attending to Jacob. Sarah didn't understand why Gemma actually had to leave. Why didn't she just move in to our basement and live there? In that way, Sarah would have access to Gemma whenever she wanted. For Joakim and I, she became a complete partner in caring for Jacob. There are so many times where we simply didn't know what was going on with Jacob. Together, we ruled out one thing after the next, and we always valued Gemma's insight to what was going on with our boy. And to me, she became a dear friend. Someone I have confided in, laughed with, and shared Jacob's ups and downs with. Someone who truly gets our boy, and what he means to us all.
It almost feels unreal to me, but today was Gemma's last shift with Jacob. So many tears...Gemma is moving on to a new chapter of her life. We are so fortunate to have had her in our lives for almost 6 years. Two thirds of Jacob's life, and half of Sarah's life. We will all miss her dearly in our daily lives, but we know this is not goodbye. We just won't see her as often as we would like to.
I have always embraced change. I know change happens for a reason. This change was not as easy for me to embrace for all the reasons I have stated above. We are very fortunate to have nurse Shereen replace Gemma. She has worked nights with Jacob since July, so we have gotten to know each other over the last couple of months. She is an excellent nurse, and she has the right kind of energy to make Jacob's life full. I honestly can't think of a better replacement.
Change is in the air, and it is time to embrace it. Love, Maria.
I have been told that Gemma stained our carpet when she started, I have heard that she didn't know how to give Jacob his meds via the g-tube and simply mixed them with his formula in his feeding bag. I vaguely remember that we all sucked at deep suctioning Jacob. The funny thing is that I don't remember any of this. What I remember is a young newly graduated nurse who gave it her all to get to know Jacob and all his care. She never ever scared away from anything she had to learn and do. I will never forget us having to prime our own IV antibiotics and give them to Jacob with the help of gravity. It is just not something you should do at home, but we did!
Gemma has a big heart, and she sure gave Jacob her whole heart. She always wanted the absolute best for Jacob from making sure he was always properly dressed (he is her handsome), always making sure Jacob was pushed in therapies, always included in all school activities, enabling Jacob to make friends, making sure he always had his own special gifts for his family for any special occasion. They created their own times of crafting, listening to Disney radio, reading endless books, watching movies, and going for long walks.
Gemma gave Joakim and I normalcy in our not so normal lives. Over the years, we learned to trust Gemma as much as we trust ourselves with our boy. We could come and go in our home always knowing Jacob was in excellent care. It gave us the freedom to participate in Sarah's life, and making sure she got the attention she needed. One time, we were all at a wedding up in Evergreen with no cell phone service. Joakim called Gemma on the land line to make sure everything was fine. We found out she was at Children's with Jacob, since he had gotten sick and needed the PICU. Every time Jacob was in the hospital, we knew Gemma would make a special visit to see our boy.
Gemma was never "just" nurse Gemma. She became part of our family. Sarah adores Gemma. She loved hanging on the couch in Jacob's room while Gemma was attending to Jacob. Sarah didn't understand why Gemma actually had to leave. Why didn't she just move in to our basement and live there? In that way, Sarah would have access to Gemma whenever she wanted. For Joakim and I, she became a complete partner in caring for Jacob. There are so many times where we simply didn't know what was going on with Jacob. Together, we ruled out one thing after the next, and we always valued Gemma's insight to what was going on with our boy. And to me, she became a dear friend. Someone I have confided in, laughed with, and shared Jacob's ups and downs with. Someone who truly gets our boy, and what he means to us all.
It almost feels unreal to me, but today was Gemma's last shift with Jacob. So many tears...Gemma is moving on to a new chapter of her life. We are so fortunate to have had her in our lives for almost 6 years. Two thirds of Jacob's life, and half of Sarah's life. We will all miss her dearly in our daily lives, but we know this is not goodbye. We just won't see her as often as we would like to.
I have always embraced change. I know change happens for a reason. This change was not as easy for me to embrace for all the reasons I have stated above. We are very fortunate to have nurse Shereen replace Gemma. She has worked nights with Jacob since July, so we have gotten to know each other over the last couple of months. She is an excellent nurse, and she has the right kind of energy to make Jacob's life full. I honestly can't think of a better replacement.
Change is in the air, and it is time to embrace it. Love, Maria.
Saturday, November 1, 2014
HAPPY HALLOWEEN!
Yesterday slipped away from me. Getting the kids ready for trick-or-treating and having seven girls over for dinner got the best of me.
Jacob has been working hard on creating his own Halloween story together with his speech therapist Brittany. Yesterday, he got to read it to the whole class!
A day late, I want to take a moment and reflect back on this holiday. We haven't always had the "happy" in Halloween. Jacob has been sick on Halloween, and he spent one Halloween in the ICU. He went into status epilepticus late on Halloween night five years ago. It took 11 days (!) to break the seizures with putting Jacob in a medicine coma. The coma failed, and Jacob's brain is since that Halloween always buzzing, and our boy lost a lot of skills in those 11 days. That is why there is not a single Halloween I don't think about seizures and what it can do to you.
Yesterday we added "happy" to our Halloween celebration. Jacob was a Minion for the second year in a row. He was handing out candy with mama, and got to hang out with our dear neighbors. Sarah, aka blue crayon, had a blast going trick-or-treating with a bunch of her friends.
Yesterday morning I scanned through old Halloween pictures, and some are just too darn cute to not share. Come along down memory lane:
2006
2007
2008
2009
2010
2011
2012
2013
2014
Jacob has been working hard on creating his own Halloween story together with his speech therapist Brittany. Yesterday, he got to read it to the whole class!
HAPPY HALLOWEEN!
Love, Maria.
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