Larry Jr!100surgeries #100victories

$18,290 of $25,000 goal

Raised by 206 people in 66 months


Please share Larry's story.  Thank you!

Our goal is to raise money for the care of Larry Jr.  Our had his 100th surgery in September, 2017.  He was born with multiple medical, physical and birth abnormalitites.  He has nearly died several times.  Our biggests expenses are medical bills, medical supplies, travel expenses and other expenses when frequently going to and from the hospital-such as food, gas, etc.  There are also unusual expenses at home because I try to modify things here to help Larry out.  I do not work.  I take care of Larry Jr and my husband when he is sick (my husband has a liver disease as a bi product of ulcerative colitis.)  Larry is home schooled for medical reasons.  He can't make it through a normal school day.  He gets too tired and he has failure to thrive because he just can't eat.  We have to keep an eye on him all the time.  Which isn't so bad, because he's pretty darn cute and funny.  Larry Sr is also ill with a progressive liver disease and is frequently hospitalized for surgeries, proecures and infections. 

Here is our story:

Larry Jr “Bear”

Last update: 9/30/17

 

My husband and I have spent a lot of time at the best children's hospital in Michigan. We have met amazing parents, nurses, surgeons and hospital staff. The doctors and nurses at U of M have kept our son alive.

 

It began in 2001. Larry and I had been married 14 years. We wanted one more baby. We had 5 children already, ranging in age from 13 to 4. Girls at the beginning and end, and boys in the middle. Larry had just finished getting his degree in Special Education and I was home full time with our children.

 

Right from the beginning of the pregnancy, I knew something was up. I was really in the best shape I'd been in a while. I just had this feeling I couldn't explain. I talked with my ObGyn who told me, "Oh it's your age." (I was 35) But I just knew from the beginning, something was going on with this baby.

 

February, 2001 at 20 weeks I had an ultrasound. I'd gone to all of our other children's ultrasounds alone. Larry was either in school or working. Ultrasounds were always fast and the tech never said anything. I'd be in and out and that was that. Larry and I went together for this ultrasound.

 

The ultrasound took 45 minutes and the technician was so nice. I said to my husband "Honest, usually they are so quick! This is really cool! She's so nice!" The tech talked, and told us what she was seeing. She said "It's a girl!" After she was finished she gathered some things up and said for us to wait, that she'd be right back. My husband has said he knew just by the way she kept measuring some of the same areas, and by how her face looked that something was wrong. Despite my feelings throughout the pregnancy, I had no clue at all.

 

Then she came back in the room with my ObGyn. "Hi!" I said. "Wow, I know it's been 4 years since I had my last child, but this is cool! Doctors come to ultrasounds now! This is nice!"

 

He said, "Well we don't normally come to ultrasounds, and this isn't good news. And I'm just going to tell you what's wrong."

 

I didn't make a sound. Didn't interrupt, as he told us that our baby had multiple problems. Our baby had so many problems that I would have to continue with my care at the University of Michigan. He said spina bifidia showed as well as many other complications.

 

I just wound up and sobbed. Wracking, loud, grief ridden, sobs. I said, "Is it because I didn't take the vitamins with folic acid? Did I do this?"

 

A few days prior to the ultrasound, a friend had asked me if I took the prenatal vitamins. "No," I said. "They make me sick."

 

"But Kathy, they prevent spina bifida!!!"

 

It doesn't matter what the doctor said, or my husband by way of reassuring me, I've always carried this guilt. I know, in my brain, that this isn't the case. But those words from my friend kept echoing in my head.

 

The time period from 20 weeks gestation to term is a blur of weekly ultrasounds, amnios, tests, and private consultations with the what we would from then on refer to as, "The Team" at University of Michigan Mott Children's Hospital.  The team consisted of pediatric surgery, pediatric neurology, and pediatric urology surgery clinics, ObGyns, social workers, etc. It was determined that our girl was actually a boy--who we named Larry Jr. We were educated, cared for and treated with dignity and so much respect.  We had doctors we had never met before, calling us at our home to talk and basically counsel.  I remember multiple times speaking to Dr Park, of Pediatric Urology Surgery, and crying, just crying my heart out on the phone to him, as he would calmly answer my questions and give me information.  I remember going to Dr. Hirschl's clinic when I was huge and pregnant to learn about babies who were like Larry Jr.   We were told then that he may not survive gestation let alone birth.

 

At some point during all of this we sat our five children down on the couch and explained to them what was going on with their unborn baby brother. After Larry and I talked with them about what could or may happen with their brother as he struggled to survive, we asked what they thought. One of them spoke up and said, "We'd rather have a special needs brother than have him die." To this the other four children nodded and agreed. That was it. It was so simple to them.

 

His brothers and sisters have nicknamed him “Bear.”  It started out as a rhyme to Larry…. “Larr-Bear” is what I called him when I would hold him as a baby.  Soon it became their name for him because he is a strong, fierce survivor.  Their Might Bear! Or Bear Man!!

 

Larry was born C-section at University of Michigan's Holden Hospital. He made it through one of the first hurdles of his life. "Birth." Larry was born with spina bifida. Spina bifida is a birth defect that affects the lower back and sometimes, the spinal cord. The kind he has is called mylocystocele and caused him to have a hole from all around his sternum and rib cage to his rectum. All of his organs were out. This hole is called a giant omphalocele. An omphalocele is a type of abdominal wall defect in which the intestines, liver and occasionally other organs remain outside of the abdomen. Ompahloceles occur in 1 out of 5,000 births and is associated with a high rate of mortality. With most O's, children's organs are out through a small hole and can be pushed back in with a few surgeries and sewed closed. Larry had no skin at all to put the organs back into. He looked like road kill. Like something that had been hit by a semi. He also was born with cloacal extrophy, which is a severe birth defect where much of the abdominal organs, the bladder and intestines, are exposed. In Larry's case it also caused the splitting of his male genitalia, and his anus was sealed. It is an extremely rare birth defect occurring in one in 200,000 pregnancies and one in 400,000 live births. Larry was split at his pelvis, he had a 14cm gap where his pubic bone should have been. He had no stomach muscles at all and no colon and eventually lost his bladder. Larry also was diagnosed with short gut syndrome which is a malabsorption disorder caused by the complete dysfunction of his bowel.

 

During the first 6 hours of Larry's life there were a lot of discussions and meetings with our team of doctors on how to proceed with Larry. As one of the surgeons put it, "You don't see your son's condition a lot here or anywhere." Many seasoned doctors came to see Larry and look and learn. Residents and Fellows also came to see Larry, sometimes to help sometimes to learn from and see Larry's condition because it was rare. Our priest came up to the NICU to baptize Larry. His blood pressure continued to drop in that first week, even after medications were given. It looked like the doctors were right. Larry wasn't going to survive after birth.

 

The first time I was allowed to see Larry in the Holden NICU at U of M,  I was still on the recovery bed from having had the C-section. They were wheeling me to my room and detoured through the NICU. He was beautiful. He looked like our son John. His dark hair and nose were definitely John. (As he became older he became Mike's twin.) I reached out and rubbed his little foot. That was all I could do. He was covered with plastic on his belly area, tubes coming out his nose, mouth, arms and legs.

 

My husband has always been able to laugh in the face of stress and trouble. Big Larry approached Little Larry's bedside, looked down and laughed. He said how crazy this little baby looked with all those lines and wires hooked up to him covered in plastic. My husband then became serious, bent down over Larry's NICU crib and said, "Larry, I can understand if this is going to be too much for you and you don't think you can do this, but I can tell you if you can keep fighting, Mom and I will never leave your side. You will have a life where you will always be loved. You have 3 brothers and 2 sisters that can't wait to play with you."

 

Larry kept struggling through the night. My husband and I took our shifts by his bedside. As the morning came Larry's blood pressure became stable. His nurses smiled as they gave us the news. It seemed Larry had made his decision to stay and fight.

 

Larry was in MOTT Holden's NICU at University of Michigan for 6 months. It was rough. We almost lost him several times. We would spend the entire day with him, and go home at night as parents are not allowed to stay the night in the NICU, to care for our children at home. The doctor's and nurses kept up constant contact with us.  Dr. Hirschl, Dr. Garton and Dr Park, and also Dr Farley who eventually joined "The Team",  were all frequently in and out of NICU assessing Larry, caring for him, performing those first early surgeries, and always, always keeping the flow of parent to child to doctor to parent to child, round and round, communication wide open.  One time they called us at 2 am to say we should come, he was doing very badly, and might not survive. We left our oldest Katie, 13 at the time in charge, and raced to the NICU to be with him.  Several times while in the NICU he nearly died.  It was so horrible trying to get to MOTT not knowing if he'd still be breathing.  

 

I didn't hold Larry Jr. until his one month birthday as the doctors wouldn't allow it. I remember that one month birthday, I was so sad. So broken. When your child is sick, when you don't know if they will live or die, it breaks you in half. I went in on the one month birthday and his nurse Laurie said, "Oh forget this, you want to hold him? You can hold him!" And she put him in my arms.  He had 13 little lines of tubing, was on the vent, with the giant hole in his belly all bandaged, and I held him oh so carefully.   And I got to hold him once a day, every day after.

 

Our family's focus has been little Larry since the day of his birth. He has had 100 surgeries thus far, blood infections, staff infections, pneumonia, failure to thrive, blood clots, testicular cancer, spinal cord untethering and spinal fusion, etc. I don't work as I care for little Larry every day, and big Larry when his liver acts up. 

 

Now----Larry Sr is also ill.  He had his colon removed in 2005 as a result of having ulcerative colitis for 20 years.  He went into liver failure in 2009 and was diagnosed with primary sclerosing cholangitis, a liver disease.  Primary sclerosing cholangitis (PSC) is a disease of the bile ducts that causes inflammation and subsequent obstruction of bile ducts both at and inside the liver and outside the liver. The inflammation impedes the flow of bile to the gut, which can ultimately lead to cirrhosis of the liver, liver failure and liver cancer. The underlying cause of the inflammation is believed to be autoimmunity and more than 80% of those with PSC have ulcerative colitis. The definitive treatment is liver transplantation.  Larry Sr is under constant care of the GI team and transplant team at U of M.  He has frequent liver infections and gets very ill turning school bus yellow.  He has had 3 blood clots.  He has stints in his liver, occasionally has a tube placed in his chest the doctors use to access his liver, and the bottom 1/3 of his liver is hard..or dead.

 

When Larry Sr initially went into liver failure in 2009, he was at a hospital in Ypsilanti.  He was getting sicker, and sicker, and sicker.  He was yellow.  His skin, his eyeballs, were the grossest color of yellow.  Vomiting.  Septic and delirious.  Extremely high fever.  I was giving up on the doctors there.  I did something, and it is not the first time I did this, nor would it be the last.  I contact Dr Hirschl, Larry Jr's pediatric surgeon via email and explained to him my husband's medical history and his current condition.  His email back was simple...  "Sounds like PSC.  He should be at U of M.  I'll contact a colleague of mine, Dr Volk, and arrange for an ambulance to get him over here."  And that is exactly what he did.  The hospital my husband was at did not know what to do with him and I know he was dying.  University of Michigan, because of Dr. Hirschl, saved him.  I found out later that Dr. Hirschl was not even in the country when he answered my email and orchestrated my husband's life saving care.  I will forever be grateful.  I don't know if this was okay.  I don't want to make any waves by having done that.  But I had no choice.  And I know he saved Larry Sr.  As he and the other surgeons have saved Larry Jr multiple times.

 

I have been taught wound, pic-line and port care, and the running of antibiotics and TPN (IV nutrition) at home. Ostomy care, lovenox injections for clots, how to operate a wound vac. Trach care, running the oxygen machine and suction machine for little Larry's trach. Feeding my son through a tube in his belly.   I can insert his nasal gastric tube through his nostril to his belly.  Something I hate doing, but occasionally need to do to help Larry Jr in weight gain.  I will and have learned anything I can so that my husband and son can spend more time recovering at home than in the hospital.

 

Our lives took a turn when little Larry was born. I'd like to think for the better. Because of little Larry, our children are better people. They gave up so much of their childhoods and their lives for their brother and their dad. They have given up "things" that most kids get.  They have become selfless, giving individuals. They know that life is not always what it seems and that judging others is not the way to go. They have empathy for others.  I will always praise them and be grateful and proud of them for this. Family, and being there for each other, no matter what, is more important than anything. And that is my number one goal, the number one thing I want to pass on to my child. For them to be there for each other and to help others.  That is all I hope for my children.

 

In the last 16 years since little Larry's birth, we have raised 5 other children who are all older than Larry Jr. Katie graduated from Kalamazoo College in 2009 and attends the University of Iowa on a full scholarship in their non fiction creative writing program. Steven  is a graduate of Eastern Michigan University and is currently working in Detroit with the Local 58. John is in the United States Navy has been on two deployments to the Persian Gulf and North Korea, and will be leaving soon for the third deployment. He married Stephanie, who we all love, in 2015. Michael recently was accepted into the Local 58 electrical apprenticeship program.   And Wee Molly, who came with me every day to U of M for that first year Larry Jr was mostly in the hospital (6 months in NICU) and used to stand next to his little bed singing to him, has completed 2 years of college and is just starting out life as an adult.

 

When you have a child who has spent the majority of his life having medical issues or in the hospital, and is in a large family, the family is not just dealing with their sick child.  And our family is not perfect.  We have faced struggles while raising our older children.  Just like any family.

 

We have a family that has 5 older children who have their own lives.  “Normal issues”.  Teen years, good grades in school, not so good grades sometimes, kids doing wonderful things, kids acting up and doing the normal teen things that make my husband and I want to knock their heads together.  Getting the older kids to sports practices, dance lessons, attending their events, celebrating accomplishments and graduations and weddings.  We’ve done a lot of juggling.  All the things families go through, we go through too. 

 

Our family is large. We are busy. Our older children have spent the last 16 years of their lives helping us care for Larry Jr. We trust them with his care as much as we trust ourselves and his nurses. We have had huge setbacks medically with both little Larry and big Larry.  Our children adore little Larry and big Larry and would do anything for them

 

Without the help of the nurses...... Without the help of Dr Hirschl, Dr Park, Dr Garton, Dr Farley and all the staff.... Without the Fellows, the residents---We never would have been able to take care of Larry’s medical needs at home as we have.  There were times over the years when little Larry had been in the hospital and so had big Larry at the same time. They would be having procedures done at the same time. Both of them sick and hospitalized at the same time at the opposite ends of U of M.  The hospital staff has helped us deal and cope with the craziness of those situations. They have stepped up to make sure we have had everything we need, have all the information and training we need, that at-home-nursing visits are covered, we have medical supplies, and most of all that we are comfortable and confident with whatever medical care we have to do at home. 

 

Larry is homeschooled for his core academics and attends public school for electives.   He is all over the map academically. He is grade level in reading, but below grade level in math and other subjects. This is due to the fact that he has spent so much time either in the hospital or at home recovering. He attends public school for electives and to hopefully make friends. The children at school are very nice to Larry Jr. They always say hello! Larry is so nice. He is so tiny. He looks more like a 10-year-old than a 16-year-old.

 

Larry’s world has been very “small” over the years. ----Meaning his childhood development was so different than our other 5 children. Larry missed so many childhood milestones such as learning to nurse or take a bottle, due to his medical condition. Nursing or drinking from a bottle leads to eating. Until he was 15 Larry had some sort of feeding tube either in his stomach or his nose which gave him his primary source of nutrition.  He now drinks BOOST as his primary food source.

 

From 0-9years of age he couldn’t walk or stand.  Neither could Larry crawl as an infant or walk around as a toddler and investigate his environment and learn as most children do. Larry learned to walk at age 9, he became a little less dependent on others but always needed so much support. So Larry’s learning was much different from his siblings from day one.

 

 

Socially, Larry interacted mostly with his older siblings and medical staff. There were no playdates with other kids his age, attending sleep overs, birthday parties or attending school on a regular basis to learn how to interact socially with his peers. Even though Larry is liked at school, children are kind and say hello, he didn’t get invited to birthday parties or sleepovers.  He never had a best friend or a close group of friends like his siblings.  It wasn’t until Larry was about 13 that we realized that he thought that all people were put together at the hospital like he was.  Larry asked Larry Sr: “When did the doctors finish putting you together Dad?” It was then we really realized there were a lot of things that Larry didn’t understand that most people understood by having a “normal childhood.”

 

When the University of Michigan football team played Florida in Texas, on the day of the game, Larry’s mom suggested that Larry text his friend John O’korn and let John know that Larry was thinking of John, and even though Larry couldn’t be at the game, that Larry would be there “In Spirit.” Larry responded to his mom, “But mom, I’m not dead yet.”

 

Larry takes things very literally, he keeps us on our toes, we often assume he may understand all of the inner workings of social conversations, but often he doesn’t. If you have a trusting relationship with Larry as his family does, he will often laugh at himself when he understands he has a misinterpretation of things. We use a lot of humor with Larry to help him learn. We are also careful with this. We know he is very self-conscious and will sometimes ask: “Am I smart?” or “Do I look weird to you?” or “Why am I different from other kids?” He wants so much to be tall like his brothers, or to be athletic.  He has expressed how sad he is that he is so small.

 

He has had to deal with the inappropriate comments or stares from others.  He handles this well. I am not kidding when I tell you that at least 5 times, for some reason—always in a grocery store---little old women come straight up to Larry Jr and I as we shop, pat him on the head and say “Oh I am sorry, when will he die?”  Or some version of that really inappropriate statement. Completely freaking Larry Jr out.

 

 I really believe that this generation of kids is more accepting and loving of people with disabilities.  This has been evidenced to us especially since he entered high school, but even more so in the last couple of months by the incredible kindness and love the Pinckney High School students and football team and given Larry Jr.  They sent him over 100 cards when he had his 100th surgery.  These cards were beautiful, meaningful, and very heart warming.  They elected him Sophomore Homecoming King!!!

 

Most of Larry’s brothers and sisters moved out around the same time.  Larry was so incredibly lonely.  Although the children at school are nice and care for him, he doesn’t have similar bonds with them as he does with his siblings.

 

 

In the fall of 2016 Larry Jr became a member of the U of M football team.  This could not have come at a better time, as he was missing his older siblings terribly.  Larry had been a Wolverine since birth, having been born at U of M—and was now on the team!!  A nonprofit called Team Impact which matches up chronically ill children with sports teams, connected Larry to the University of Michigan’s football team. He met John O’Korn in April of 2016.  The moment Larry became a Michigan Wolverine, Larry’s life started to change. It wasn’t long before Larry had the cell phone numbers to a few players. He started to text some of the players, go to games and drop off cookies for the players at Schembechler Hall. As the football season came and went, Larry stayed connected to his Wolverine friends and continues to do so throughout this season. Larry’s small world became much larger. We could see Larry’s social skills improving along with his self-esteem!

 

Larry is a part of 4H, shows his chicken and pigeons at the local fair and participates in therapeutic horseback riding.  He is on the Mott Hospital Teen Advisory Committee and helps make decisions, and gives advice to help children and teens like him. He volunteers with the Arc of Livingston, a non profit organization which supports people with disabilities. He has been to many fundraisers as a guest and made speeches about his life at these fundraisers.  Some are Team Impact, The Ann Arbor Center for Independent Living, The Arc of Livingston, Special Olympics, Kiwanis, Mott Hospital on several occasions, too name only a few.

 

Larry wants to write a children's story to help kids with coping techniques. Larry has phenomenal coping techniques. He is never a “brat” or  “out of control” at the hospital even through the most painful of situations. His coping techniques help him get through some very tough situations are: 1) stay calm, 2) stay quiet, 3) stay still, 4) breath slowly, and 5) always, always say thank you to the nurses. And in the case of blood draws or IV pokes---If the staff member can't find a vein it is “One and done” meaning get someone else. Or “3 strikes you’re out!”, again meaning get someone else---depending on situation and the confidence and experience of staff member. Larry, with the help of the Arc of Livingston, is learning to speak up and advocate for himself. He is not cognitively impaired, but is very, very developmentally delayed. One important characteristic he has, which we have always stressed is important for all children to exhibit, is—no matter what the situation is---stay polite and classy. Don't lose it.

 

Well this is Larry's story. I update it and change it periodically. There is really so much not written here. I have kept a journal since 2003. Someday—maybe I will try and publish it. We will see.
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From November 30 update on Larry recovery
Late yesterday evening Larry developed a bowel obstruction. He has two ostomies coming out of his abdomen for voiding, and no colon and no bladder. And it is okay if I share this with you because this is just his body. And Larry is proud of his body and everyone is different and so what if someone has ostomies right?? And he is not embarrassed about his body and if you ever have questions, he really and truly loves to talk medical talk.

He was born without a colon, and his bladder had to be removed after stupid Johns Hopkins put a screw through it and ruined it. And I mean, they put a screw through my son's bladder, and left it there. And our docs at Mott found in many months later and had to remove his completely destroyed bladder. I tried to sue old JohnnyHopp but we were past the statute of limitations. So.... Bummer.

When he is on pain medication it causes him to have bowel obstructions. He gets these fairly easily as it is on a nearly daily basis, but they become much, much worse when he's recovering from surgery, has had anesthesia, and when he's on narcotics. They're extremely painful and dangerous. Larry's tummy is a mass of scars. Like a burn victim. And he has no muscle or fascia so it is very easy for his intestines to catch and kink. And they do this often. Last night, we did all of the tricks of the trade that we have been taught by our medical gods and he seemed to settle down and he went to sleep. This was last night.

Then today, his back was in so much pain that he cried most of the day. We had to give him his heavy duty narcotics again which doesn't help his, ehem....productivity. He still has a bowel obstruction although some bit of yucky-yuck is getting through. I've been in communication with one of his pediatric surgeons so we're on top of it.

No one's going to die of constipation on my watch so help me Jesus.

He must be feeling a little better, or maybe it's cuz he is hopped up on narcs, because right now he's laying on his recovery cot in the family room laughing at monkey videos.

Our goal is for our kid to not end up back in the hospital with a bowel obstruction Finger's crossed.

I always feel like a Civil War nurse. You know, like I've kind of been thrust into all of this chaos and have gotten training on the job. I'd be really good at helping those soldiers with constipation. Do you know that I actually went to school for nursing? I always wanted to be a nurse. But I changed to Legal Administration because I am an idiot. I have a bachelor's degree and I cannot stand my degree. I certainly don't know as much as the nurses up at the hospital, but I have learned a lot and I can take care of my people here. Sort of. And if you're ever constipated, gimme a ring. I got skills.

My hubs and I are ready to kill each other. Or maybe it's one sided. And you can guess which side wants to do the killing. I admit, when I am beyond anxious and stressed--I just wanna sock him in the face if he so much as offers me a cup of coffee or smiles. And the whole time I'm just like--"Kathy, don't do it don't do it don't do it. Don't sock your husband in the face. He has a nice face. Get a hold of your mental minefield." Sometime ago driving somewhere in our car I asked my husband, "Are you glad you met me?", and LITTLE Larry replied from the back seat.... "Yea."

I know I am a wreck. I am on the edge. I am terrified of Larry Jr getting an infection, or his guts blowing up everywhere because of some massive bowel obstruction. I'm just always waiting for that infection. I'm terrified of my husband's liver going back into failure, or of him dying of a DVT in his sleep right next to me. I feel like the Titanic. . Always 2 feet from the iceberg.

I think I really needed to just get out of the house tonight, and have some fun and get my freak on with my girls. I am old but I'm hip, so....I went to the grocery store where all the popular moms go to hang. We had absolutely no food and I think I spent 3 hours there. In the end I had 1 and 1/2 shopping carts full.

I also got cat food and dog food for our livestock. Here on the farm, we have 6 cats and 3 dogs and sometimes it feels like there are 16 people living in this house. We are farmers of cats and dogs and people, and they need feeding.

I had to get this 50 pound bag of dog food on the bottom of my completely full cart. It took me 5 minutes to wrestle this bag onto my cart.

While I was sprawled on the floor of the supermarket looking dainty and delicate, this dude walked by wearing.......wait for it.......anytime fitness clothes, and you could tell he had just come from the gym.

I was on my knees on the floor in the supermarket, trying to shove this 50 pound bag of Luvsome-dog-food onto the bottom of my cart, which kept rolling away from me down the isle, with my spine about to snap and my muscles in my should ripping, and sure enough, buff boy saunters on by and helps me NOT at all, and I have too much pride to cry out for rescue. In my head I am thinking, "suck my ass," but I don't say that out loud because I am a Christian.

Somehow I got this floppy dumb bag onto the cart because.......I am magic. All that I do????.....magic.

During my grocery store girls night out, I realized I did not have my debit card. I was freaking out. I mean, dear God, was I going to have to go all the way home and get my stupid card? I finally found it, out in my car above the visor, (No idea...) and I went to the grocery line and low and behold, I saw a pirate. This pirate gave me a 50 gift card to go towards our groceries. I tell you we run into these angels all the time. Thank you very much friend. We love you, you Pinckney Pirate you!!!!!
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From my November 29 facebook post on Larry's surgery.
Larry slept pretty good last night. The nurse was diligent staying up on his pain meds. I got some sleep. Just after 5 Kaboom! In comes doctors making their rounds. All that is so hard. Waking up, having to pee so bad, trying to focus, mouth so dry you can't even form your words.. So they ask how is Larry... I say he slept well. They ask how was his pain... I say it's under control. They say okay good any questions? I said can you make sure he has a PT order for when he's discharged. They say sure we'll start those papers. And now he's being discharged. Which is great. But I feel sort of tricked. And it makes me feel like I'm not doing my job for Larry. Then I get angry at myself and want to sock myself in the face. Damn damn damn. All who know us know the sooner we get out of here the better. As much as Larry loves all his people here at Mott , home is where you heal. However, he hasn't even walked yet. So I called his nurse back in and said......hey we need to slow down we need to make sure Larry can walk, they have not even a stopped his IV or slowed it down. He's been getting his full Iv fluidd since surgery. It has to be slowed down and then we have to see if he gets a bowel obstruction or if things keep working. So already... The papers have been signed. Jesus mother Mary and Joseph. Words barely out of my mouth when they've got the paper signed. But don't worry we will chain ourselves to the bed if we have to. I need to make sure he can take a step, that his body is working properly, and then we will happily run home as and elbows outta here! It's so weird being on a service that doesn't know his insides. They are wonderful at what they do, the skeletal bones all of that!!!!. But Larry has insides too. He's a whole person. He is not a spine. This is aggravating. He also wanted to make sure that we told Eli thank you for the card! Larry loves it! You did great job!
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Here the second part because of the word limit---

part 2 from Nov 28th, the day after Larry's surgery.

In the past they used to do this "blow by" thing, where they didn't put the mask on Larry, just held it close to him to go to sleep. Years back they said "they couldn't do it that way" anymore. Hence, putting him to sleep via IV. Larry is a champion IV and Blood Draw kid, and adjusted to this. But like I said, his veins are shit, and especially when dehydrated.

One anesthesiologist ran and called pediatric surgery (always Larry's saviors) and Dr J came down. Larry wanted one of us to go with him. I did not want to make things worse. I already fought with the doctor and new I could just lose it and was desperately holding it together for him, so I said to my husband--your'e it. You go. I am a useless, maniacal, emotional, freaked out mom at this point. So big Larry donned the hazmat suit, mask and hair net, and went with my baby to surgery number 102.

When they headed to OR with Larry's team, I just lost it. I bawled like a baby. Anger, frustration, fear. Sending your child back with a trusted surgeon we have known for 17 years that I suddenly did not trust. My baby. He's my baby people. I don't care how old. He has impairments, he is an angel, he is kind and polite and loving and empathetic. He is always kid. He hasn't a mean bone in him. He's my baby.

Dr J (the super human savior god of all times that he is) came in to OR per my hubs and Larry Sr was so glad to see him as was our young Larry. My husband described it as "We were saying hello--and glad to see each other, ,he was glad to see Larry and BOOP! he popped that IV and wala---all was done."

Then--yes--the surgery was a success. Now we wait for recovery, for Larry to gain strength and to pray for no infection.

I'm sharing this all because advocacy is priority, the patient's voice is priority. We have no this doctor for years, this is a remarkable doctor who has worked on Larry multiple times. But this was a bad experience. The surgery was a success. And we did receive an apology. Which we appreciate But even if you known everything, have a million degrees, are the one in charge, etc...you cannot lose touch with patient family care. How dare any dr forget the most important component. The patient, the family. --hence Patient Family Centered Care.

In the meantime, I eat. I worry, therefore I eat. Is anyone else out there like me? The weirdo who looks forward to stomach flu season to kick start my diet? Yea-- I just joked with one of Larry's nurses on how I am always looking forward to something that helps me jump start back into maintaining healthy weight---Like the stomach flu!! Pray for the stomach flu so I can lose the 10 pounds of Hershey's Kisses I just consumed. And thank you everyone -- for the prayers and positive thoughts for my wee beastie-- our ever loving Bear. and thank you to them amazing Mott staff who continue to put Larry first!
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I haven't typed in a while. Larry had his 102nd sugery. Although I greatly appreciate this site because of the amazing help we receive, it is hard to post on here. I wish gofundme would increase the word limit. People like Larry have extensive multiply medical complexities. It is only fair that we share our lives after the generosity of everyone. So gofundme---increase the word limit!
Part 1-----
Nov 28, the day after Larry's Nov 27th, 102nd surgery to remove the rod in his back.
In walks orth and plastics surg posse for the morning hype and I peel my crusty, stingy, blood shot eyes open.

Very pleased to know that his closure done by plastics, from his neck to his pelvis, looks beautiful, went smooth, and is all glue and stitches and no staples. This makes Larry happy. He hates staples!!!

Very happy to know that Ortho was able to remove all 24 screws, 24 set screws, and 2 rods. Dr said his spine looks beautiful, it does appear to have fused itself which is the best news. They saw no infection and healthy bone. Because I'm telling you, I was worried, we all were, his docs as well, about what they would find. Infection? Messy spine? Would the spine hold with rod removed? So far- looks great.

However---Here he is. He had a rough night. His pain has teeth and those teeth are clamped right onto my boy.

Larry is medically complex, yes I know we all know... But you see--when he is on ortho and plastic service and their "work here is done son!", they are ready to kick you out the door.

We were up all night. He hurts. He has not eaten yet. Is still on morphine. His bowels haven't fully kicked in gear. In hospital PT hasn't even been ordered. But --- "You can go home! Surgery was great!"

Settle down kids. This is where... when you have a medically complex person, whatever "service" they are on for their current hospital stay focuses on just their "THANG." And the two current services were successful with their THANGS. So--"See you Larry! We did it! You're cured! Now go home!" What they are saying is - "We did good! Now git yourself home Larry!" I just smile and act interested, and then do what is right for Larry.

Thank God for nurses and palliative care who also put the patient first and do what is right for Larry. Larry hasn't even gotten into a sitting position yet. Also, no feeds have started yet.... because of 15 years of feeding tubes and trach and oral defensiveness, he only drinks BOOST. High calories, it has everything he needs in one 500plus calorie Boost box. YUCK. MACK ME GAG. But--it works for him. Not one sip of the mighty powerful Boosts has passed his lips yet. He has ostomies for urine and stool and those two delicacies need to wake up so we can have a poo party. PT hasn't started. He is hurting like a mutha----

Why do some of these services, as amazing as they are, and as successful as their procedure went, want to boost (no pun-reference to his life blood/food of choice intended here) a patient out the door without looking at the WHOLE PATIENT????

Larry is a whole person. He is not spina bifida, or omphalocele, or cloachal extrophy or any other diagnosis. All these diagnosis fit under the huge umbrella that is ALL of Larry. So- we parents advocate. We become nasty, witchy, scarry, hairy, boiling over blobs of fury.

I--ehem----am ALWAYS polite. Smile. Even brush my teeth while here. But- I will advocate for my son. He comes first.

Which reminds me of last night.

Larry's procedure was for yesterday morning. We got a call saying because of an emergency case he was being bumped to around 1. We fully understand as Larry has had do bump other kiddos before. It stinks, but we are grateful Mott prioritizes when a life threatened patient needs to be put first.

However, we arrived around 1? Larry was checked in by a very nice nurse, saw child life--all good--and then saw no one. Period. At all. I think it was around 4 or so when we finally started poking around. . I have no idea what time the action started to happen, ,but basically, because Larry had no liquids from around 8 am, and because he has two ostomies for stool and urine, he was dried up. His veins were shrunk.

Anesthesia tried to put in the IV and could not. 2 different people tried 3 times. We have a 3 strikes you're out rule. If they cannot get it in after then they MUST stop and get someone else.

Do you know what it is like to see your child have someone with a sharp needle IN THEIR ARM, digging and digging around for 90 seconds because the vein moved? It's always the vein's fault by the way. I don't know everything, but I am telling you--he has had 102 surgeries. That is AT LEAST 200 IV's, plus the IV's that they have to put it while he is recovering, or when one goes bad, or in the ER, or when he is sick with infection, or all the countless blood draws--totally hundreds of pokes into veins that he has had and I have witnessed.

I am telling you--if that needle doesn't get in that first try, IT AIN'T HAPPENING. I abhor when they dig and dig and gouge out my kid trying to just find that illusive vein. STOP! Larry Jr is the perfect patient. I put my life on that one. I have 6 kids who have had various degrees of tonsils out, ear tubes, shit--3 of my kids had tumors or cysts removed from their head-no lie- it's a family thing. No lie--Molly had a boney tumor, John had this freaky neuro blastoma at age 14 and miraculously had one, no complications and no other. Kate had a cyst removed. Steve's cysts is still riding his skull. Mike's been in 2 serious car accidents, need I gone on? So I know the difference between the perfect patient and the kid that is a nightmare. I have a few nightmares.

Larry yesterday, was doing his breathing, his holding still, quiet as a mouse as they are carving out his arm for a vein. He turnst to me and says frantically but oh so quietly "Can I please tell them stop?" I said "YES! Of course! Larry you can say anything!." He turns and says to what he feels is Freddy Krueger "Can I please say Stop?" --- That poor, polite, kind, young dude.

So after waiting hours and hours, the doctor flies out. Larry's other phobia has always been "The Mask." There are only 2 things after all these years that he asks for. 1) that mom or dad go with him when he is put to sleep. 2) No mask for anesthesia.

Last time he went into surgery he bravely said he could go by himself. He did wonderful.

This time because they couldn't start the IV, as they do with most kids, the doctor very impatiently and angrily in front of Larry, as if Larry is some kind of spoiled brat making demands, declares he need to just go in the OR, get put to sleep with the mask and then they can start an IV because "They've been waiting and are ready to go start this surgery.!"

I was LIVID. Larry was shaking he was so scared. He went to the bathroom with dad to empty ostomies, which annoyed the dr, another delay on Larry's part. I was so upset I was shaking. I said, they can't start the IV! Find someone who can! And we need to hear Larry's voice, he does not like the mask. You've been waiting? He's been waiting since 10 o'clock!

We are talking minutes before surgery. And she wanted this rush immediate decision for everyone to just adjust and be okay. In particular the patient.
continued in next post
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$18,290 of $25,000 goal

Raised by 206 people in 66 months
Created February 23, 2014
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MB
$17
Michelle Barnett
8 months ago
$25
Anonymous
8 months ago
MS
$1,100
Maize n Brew Staff
8 months ago

Proceeds from our t-shirt sale. Go Prouts and Go Blue!

AF
$50
Andy Fennell
10 months ago
$75
Anonymous
15 months ago
MA
$10
Michelle Antolak
15 months ago

My sister, Kim Halstead just adores you. You are in my thoughts and prayers. May you have health and healing. God bless!

$100
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15 months ago
$30
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15 months ago
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