CYPHER DEAN HORST
Donation protected
I am asking for help for my 3month old son, Cypher.
he was born with LONG-SEGMENT AGANGLIONOSIS (HIRSCHSURNG'S DISEASE) which is: A birth defect in babies in which part of the large intestine is unable to move waste properly. This causes a blockage in the large intestine of the new born baby. If a developing baby has Hirchsprung disease, the ganglion cells either don’t reach the large intestine or don’t become functioning ganglion cells when they get there. When this baby is born, a section of large intestine does not have ganglion cells. It can extend to a small segment or a longer segment involving the colon or rarely the entire colon. Without ganglion cells to signal the intestinal wall to relax this area of the large intestine stays contracted and narrow, blocking the passage of waste and gas. As waste and gas build up behind the blockage. The large intestine and abdomen begin to swell. The baby may develop an intestinal infection called Enterocolitis, then the intestine may stretch further and cause vomiting and nutrition problems.
Cypher was born on February 6th 2018. everything was going great unitl day 2 of his life, he had not had any bowel movements in 24 hrs + he was vomiting (the color of bile, which was dark green to yellow brown) , he would cry to where I couldnt help him or sooth him. because he was in so much pain and I didnt know what was going on.
His Pediatrician perform several tests in order to confirm a diagnosis.
An abdominal X-ray is used to identify any intestinal blockage.
A contrast enema is a special type of X-ray of the colon that shows the doctor exactly what part of the colon is diseased. This X-ray also helps the surgeon plan the surgery.
A rectal biopsy is a test that takes a small bit of tissue from child’s rectum (the lowest part of the large intestine) so doctors can look at it under a microscope. The biopsy lets the doctor examine nerve cells in the tissue sample and helps establish a diagnosis of Hirschprung disease. If this biopsy is inconclusive (sometimes the sample is too small), then a second biopsy will be done in an operating room.
Anorectal manometry uses a small balloon to record pressure changes within the colon and rectum, and determines if the bowel is functioning normally.
At 15 days old he had his first surgery that was eight hrs long to preform a total pull-through procedure. In Cyphers case he lost all of is large intestine, his appendix, and about 2cm. of his small intestine.
meaning that he will never have normal bowel movements, it will always be like liquid substance or paste like.
Things that we have to be aware of in Cyphers condition is:
becomes constipated, has small watery stools, a swollen belly, lacks energy ,runs a fever, vomiting, lack of appetite should be taken to a doctor right away.
Constipation can lead to enterocolitis or infections of the intestine that can be life threatening. Whenever a young child who has been treated for Hirschsprung's disease changes his or her diet (such as going to vacation or starting school), it is important to be alert to constipation issues.
Shortening the intestine makes it harder for the child's body to absorb enough nutrition and fluids. This in turn may cause poor digestion or slow growth.
Cypher is prone to a serious intestinal infection called enterocolitis.
which he got and still has when he was about 2 months old.
Enterocolitis can be life-threatening. It's treated in the hospital with colon cleaning and antibiotics
Doctors admit Cypher with enterocolitis to the hospital for monitoring, rectal irrigation, and intravenous (IV) antibiotics and IV fluid. Doctors gave IV antibiotics and fluids through a tube inserted into his vein in his arm.
Cypher continue to be at risk of developing a bowel infection (enterocolitis) after surgery, especially in the first year. things we have to be aware aware of... signs and symptoms of enterocolitis, and call the doctor immediately if any of these occur:
Bleeding from the rectum
Diarrhea
Fever
Swollen abdomen
Vomiting
loss of appetite
Cypher will need to drink more liquids to make up for water loss and prevent dehydration. He also need twice as much salt as a healthy child. His doctor can measure the sodium in Cyphers urine and adjust his diet to ensure adequate salt replacement.
due to this Cypher can no longer breastfeed. it doesnt fit his deit plan. he burns to many calorie breastfeeding
Cypher has been placed on special formula to help his stomach to not have to work so hard to break down proteins so his body wont lose calories.
Cypher has needed a tube feedings for a while do to lack of appetite from swollen small intestine which also causes him to vomit anything he eats. which then causes him to become dehydrated.
A feeding tube is a passageway for the Cypher to receive infant formula or liquid food directly into his stomach . His doctor passes the feeding tube through the nose and bridles it to nasal bone. And at some point the doctor would like a more permanent feeding tube that he puts in place surgically in the Cyphers abdomen.
Cypher is in and out of the hosptial due to illnesses and dehydration
he has had several IVs put and and blow with in hours of getting them put in. It is also very hard to find a good vein on him when dehydrated so the doctor has put in a mid line for one of his stays, then on a nother stay he had a PICC line put in his upper thigh , which ended up blowing and filled is leg up with fluids and turn purple. had to have and ultrasound done on his leg twice and found a blood clot.. he is now on blood thinners for about three months or so.
Doctors have now Diagnosed Cypher with Infant failure to thrive and
has scheduled surgery to put in a central line catheter into his right subclavian vein to be able to give him his TPN and IV fluids. due to his weight going up and down and not holding his weight.
Cypher was born weighing 8lbs 9oz since his first surgery he has lost weight and has not been able to get back to his birth weight due to his lack of appetite and illnesses.
We are asking for donations to help us be able to pay medical bill, home health supplies, medications, special colthes for him to wear when hooked to all his cords, home bills, to help pay for daycare for our other children when parents are at hospital and work.
The donation will help us focus more on our child in hospital and other children that are at home instead of stressing out on how things are going to get paid.
Our fears in all of this is:
losing are beloved child Cypher
losing our home that we have made for our family.
losing everything we has worked so hard to accomplished.
losing ourselves in this process of all the loss that could happen.
We would like to thank you for taking the time to read and learn about Cypher and his disease.
We appreciate you and thank you for any and all donations that you provide.
If you are unable to donate money, thoughts and prayer are prefect and welcomed!!
God bless and Thank You so very much .
Love, Cypher and His Family
he was born with LONG-SEGMENT AGANGLIONOSIS (HIRSCHSURNG'S DISEASE) which is: A birth defect in babies in which part of the large intestine is unable to move waste properly. This causes a blockage in the large intestine of the new born baby. If a developing baby has Hirchsprung disease, the ganglion cells either don’t reach the large intestine or don’t become functioning ganglion cells when they get there. When this baby is born, a section of large intestine does not have ganglion cells. It can extend to a small segment or a longer segment involving the colon or rarely the entire colon. Without ganglion cells to signal the intestinal wall to relax this area of the large intestine stays contracted and narrow, blocking the passage of waste and gas. As waste and gas build up behind the blockage. The large intestine and abdomen begin to swell. The baby may develop an intestinal infection called Enterocolitis, then the intestine may stretch further and cause vomiting and nutrition problems.
Cypher was born on February 6th 2018. everything was going great unitl day 2 of his life, he had not had any bowel movements in 24 hrs + he was vomiting (the color of bile, which was dark green to yellow brown) , he would cry to where I couldnt help him or sooth him. because he was in so much pain and I didnt know what was going on.
His Pediatrician perform several tests in order to confirm a diagnosis.
An abdominal X-ray is used to identify any intestinal blockage.
A contrast enema is a special type of X-ray of the colon that shows the doctor exactly what part of the colon is diseased. This X-ray also helps the surgeon plan the surgery.
A rectal biopsy is a test that takes a small bit of tissue from child’s rectum (the lowest part of the large intestine) so doctors can look at it under a microscope. The biopsy lets the doctor examine nerve cells in the tissue sample and helps establish a diagnosis of Hirschprung disease. If this biopsy is inconclusive (sometimes the sample is too small), then a second biopsy will be done in an operating room.
Anorectal manometry uses a small balloon to record pressure changes within the colon and rectum, and determines if the bowel is functioning normally.
At 15 days old he had his first surgery that was eight hrs long to preform a total pull-through procedure. In Cyphers case he lost all of is large intestine, his appendix, and about 2cm. of his small intestine.
meaning that he will never have normal bowel movements, it will always be like liquid substance or paste like.
Things that we have to be aware of in Cyphers condition is:
becomes constipated, has small watery stools, a swollen belly, lacks energy ,runs a fever, vomiting, lack of appetite should be taken to a doctor right away.
Constipation can lead to enterocolitis or infections of the intestine that can be life threatening. Whenever a young child who has been treated for Hirschsprung's disease changes his or her diet (such as going to vacation or starting school), it is important to be alert to constipation issues.
Shortening the intestine makes it harder for the child's body to absorb enough nutrition and fluids. This in turn may cause poor digestion or slow growth.
Cypher is prone to a serious intestinal infection called enterocolitis.
which he got and still has when he was about 2 months old.
Enterocolitis can be life-threatening. It's treated in the hospital with colon cleaning and antibiotics
Doctors admit Cypher with enterocolitis to the hospital for monitoring, rectal irrigation, and intravenous (IV) antibiotics and IV fluid. Doctors gave IV antibiotics and fluids through a tube inserted into his vein in his arm.
Cypher continue to be at risk of developing a bowel infection (enterocolitis) after surgery, especially in the first year. things we have to be aware aware of... signs and symptoms of enterocolitis, and call the doctor immediately if any of these occur:
Bleeding from the rectum
Diarrhea
Fever
Swollen abdomen
Vomiting
loss of appetite
Cypher will need to drink more liquids to make up for water loss and prevent dehydration. He also need twice as much salt as a healthy child. His doctor can measure the sodium in Cyphers urine and adjust his diet to ensure adequate salt replacement.
due to this Cypher can no longer breastfeed. it doesnt fit his deit plan. he burns to many calorie breastfeeding
Cypher has been placed on special formula to help his stomach to not have to work so hard to break down proteins so his body wont lose calories.
Cypher has needed a tube feedings for a while do to lack of appetite from swollen small intestine which also causes him to vomit anything he eats. which then causes him to become dehydrated.
A feeding tube is a passageway for the Cypher to receive infant formula or liquid food directly into his stomach . His doctor passes the feeding tube through the nose and bridles it to nasal bone. And at some point the doctor would like a more permanent feeding tube that he puts in place surgically in the Cyphers abdomen.
Cypher is in and out of the hosptial due to illnesses and dehydration
he has had several IVs put and and blow with in hours of getting them put in. It is also very hard to find a good vein on him when dehydrated so the doctor has put in a mid line for one of his stays, then on a nother stay he had a PICC line put in his upper thigh , which ended up blowing and filled is leg up with fluids and turn purple. had to have and ultrasound done on his leg twice and found a blood clot.. he is now on blood thinners for about three months or so.
Doctors have now Diagnosed Cypher with Infant failure to thrive and
has scheduled surgery to put in a central line catheter into his right subclavian vein to be able to give him his TPN and IV fluids. due to his weight going up and down and not holding his weight.
Cypher was born weighing 8lbs 9oz since his first surgery he has lost weight and has not been able to get back to his birth weight due to his lack of appetite and illnesses.
We are asking for donations to help us be able to pay medical bill, home health supplies, medications, special colthes for him to wear when hooked to all his cords, home bills, to help pay for daycare for our other children when parents are at hospital and work.
The donation will help us focus more on our child in hospital and other children that are at home instead of stressing out on how things are going to get paid.
Our fears in all of this is:
losing are beloved child Cypher
losing our home that we have made for our family.
losing everything we has worked so hard to accomplished.
losing ourselves in this process of all the loss that could happen.
We would like to thank you for taking the time to read and learn about Cypher and his disease.
We appreciate you and thank you for any and all donations that you provide.
If you are unable to donate money, thoughts and prayer are prefect and welcomed!!
God bless and Thank You so very much .
Love, Cypher and His Family
Organizer
Tialissa Rose
Organizer
Lennox, SD
