SHORT BOWEL SYNDRUM

Paris is home

2011-12-04T04:56:00.000-08:00

I think the whole experience is sinking in finally. Paris is adjusting to having a tube in her stomach. I feel like I have a hospital hangover. The phone will not stop ringing, nurses,therapist,neighbors, and supply coming and going. I want my life back. I'm still convinced God has mistaken me for that mom that has 19 kids and counting. Nathan had a panic attack yesterday but is in denial. Its pretty overwhelming. Paris' pump goes off quite a bit at night. The line keeps getting kinked. Last night our underground dog fence broke so it was beeping. I go running to Paris room to adjust her pump but its not beeping. After freaking out for a bit I finally realized it was not her pump being possessed. I guess it due to not sleeping in 10 days. Nathan is handling it much better except for the panic attack he had yesterday. Christmas is coming and I still can not get into it. I feel like I just lost 10 days of my life. We got a tree it's like 2 feet tall because that's all we could handle due to unexpected circumstances. Paris is in more pain than I thought she would be. She is tough little trooper. Jamie has become her nurse and loves to tell me I'm doing everything wrong. Brandon is Brandon. Eat, sleep, make parents mad, facebook, then do it all over again. I was warned about the teenage years by my mother. I always thought she was just over exaggerating her experience with me. My dad told me once that his mother said someday you will get one like yourself, he told me Brandon is that one.

Paris day 8 in hospital

2011-12-01T13:29:00.000-08:00

Sometimes I can't finds the words to actually express the expierence. Yesterday was one of those days. She recieved an other red blood tranfusion and also a bag of platelets(also blood). She got her third IV also. They put the tube in the same hole as the last one. One less scar. If everthing goes well she will come home tomorrow.

Paris staying busy in the hospital

2011-11-29T17:10:00.000-08:00

Today was dad's day to visit the hospital. Medically, the numbers from her bloodwork still are not changing much. The doctor tells us this is still normal but says he sees new blood cells under the microscope. Tomorrow she is scheduled to get her G Tube installed. The doctors plan to do it with an endoscope and will try to use the same location as her old one from about 7 years ago. Karla will be with her through the entire process. Paris is supposed to get a new IV catheter tonight which she is not happy about. Tomorrow, before the procedure, she will get some platelets through another blood transfussion. Her count is still low and the doctors don't want any bleeding problems tomorrow.

Paris was in much better spirits today. Her face looked better but still had a little swelling. Paris likes to spend her time playing the wii. The wii is provided through the Child Life department which provides an endless amount of resources for children including a number of video games and movies. She found a game that lets her groom, train and ride horses. Paris did homework yesterday in all her subjects except Bible. I took her Bible book today and she was able to complete it in about 10 minutes. And then, of course, she was back taking care of her horse. Paris is dying for another child to play with. We walked several laps around the ward, hoping to meet another child with no luck. I know Karla has tried to help her do the same thing. The best plan seems to be attending an organized arts and crafts time provided by the volunteers and hoping to meet someone then. We plan to try this on my next visit, Thursday. Paris also spent time today viewing her blog particularly the old photos of her with a G tube.

I want to say thank you to all the people out there who have given Paris so much support. Her room is filled with gifts and she has had visitors on several occasions. She has had visits from Donna Sterling from her school, Pastor and Mrs Lum and Mrs Fry, Mr Phelps and Mrs Phelps from her school visited her this evening. The nurse said she could here the laughter at the nurses station. Apparently, Mrs Fry got a kick out of the horse game on the wii. Mrs Fry also brought the other subjects of Paris' homework for her. When I talked to Paris, she was busy working away while watching Home Alone 2. I was amazed that she had started already. She also had a plan to get the nurse to help her with her spelling words. I let her know that it might no be the best idea and that mom would help her tomorrow. Thanks again for all the prayers and support. Hopefully, she will be home soon.

Old picture of Paris with g-tube

2011-11-29T07:53:00.000-08:00

Day 6 in the hospital

2011-11-29T05:17:00.000-08:00

Yesterday was mostly the same. Except, I, Dr.Houk, wanted to see if we could just place the G-Tube in and avoid the tube which gets replaced in a few weeks by the G- tube. So I convinced the GI doctor to get the pediatric surgeons on her team. I made it past the first resident doctor only. The second resident came down with the news of " nice try". My theory is one tube is less painful than 2. Their theory is, the first tube forms a track and prepares her stomach for the next tube. They also said that procedures that are safer and less invasive are better for Paris. I'm not completely convinced because I know from experience that this has been done. They said that some doctors will do this but this one will not. I was out numbered and my case was dropped. The funny part is when they decided to call her main GI doctor Dr.Damico which had no clue this was all going on and had already planned on doing Paris procedure on Wednesday. He was not amused. I'm pretty sure I had completely spun up the rest of the day. I moved on. They sent in a few new people today first was a speech pathologist. I'm still not sure why. Next came the Psychologist, who had not a clue about Paris condition. He said he read her report but when I asked him a few questions I realized he had not. So he was there to figure out why Paris does not want to eat but had no clue she was missing most her intestines. Tochee, Dr.Damico!! I get it. My mother is a therapist and I do know a thing about them. First and formost never say anything you do not want analyzed. Second everything you say will be analyzed for future analyzing. So NEVER talk about anything except the weather and your good. I'll be making a sign for Paris door tomorrow for all new doctors and therapist "WARNING!!! Read Paris report before entering her room or deal with tired,hungry,frustrated MOM"
Paris' had an ultrasound and and upper GI done today. She hanging in strong.

The G-Tube is going in on Wednesday

2011-11-28T16:13:00.000-08:00

A gastrostomy is a surgical opening through the abdominal wall into the stomach for the placement of a feeding tube.

There are a couple of ways that a gastrostomy can be made. One is by an incision through the abdominal wall (the layer of soft tissue and muscle that covers the stomach) from just below the ribs to just above the belly button. The second is called a percutaneous endoscopic gastrostomy (PEG) and uses an endoscope to help the surgeon poke a hole through the abdominal wall into the stomach.

Because of all of the scars on Paris' abdomen from all of her previous surgeries, the GI doctor's preferred to do a PEG placement instead of the surgical placement. A PEG is considerably less invasive than surgical placement as well.

To place a PEG, the surgeon passes an endoscope, a long, slender tube with a light and a video camera on the end, through the mouth and down the esophagus into the stomach. The surgeon can then look through the tube and see the inside of the stomach.Once the endoscope is in place, the light from the endoscope is visible on the outside of the abdomen. The surgeon then pushes a hollow needle into the "light" on the skin and the abdominal wall and into the stomach. A wire is then threaded through the needle into the stomach.

When the surgeon is able to see the end of the wire with the endoscope, he will grab it with a tool on the end of the endoscope and pull it up the esophagus and out the mouth. A soft, silicone tube is then attached to the wire and then pulled down into the stomach and out through the opening in the abdominal wall. A small dome-like device on the end of the tube prevents it from pulling the stomach out the opening.

A small bolster is attached to the part of the tube next to the skin to hold it in place.

Life is a journey, not a destination

2011-11-27T09:39:00.000-08:00

Have you ever heard the saying "How do you eat an elephant?" I have many times. Although its obvious one bite at a time. I have come to the conclusion that we should NOT eat an elephant. Why an elephant anyway and not an ant? Ants are full of protein and easy to swallow. If you think about it why not let God swallow the elephant and I'll eat the ant. That's what He wants us to do anyway. I think we make life much harder that it was originally designed for. We make mountains out of mole hills and wonder how am I going to do this. When times in my life are hard or painful. I have always been able to get through it. Becoming stronger and wiser. If this is true than why not accept what is in front of you and have fun. Well because we see an elephant not an ant.

11-26-11 a funny story

2011-11-27T04:04:00.000-08:00

Here is Paris' personality in a nut shell. I always loved her small but strong smile. Yesterday Paris got her first of many B-12 shots, ouch what a mean shot. It must go deep into a muscle. We spent most of the day in the room that Ronald McDonald provides, so next time you go through the dive through and throw change in we thank you!!! I spent most of the time on the computer researching B-12 deficiencies and Paris was next to me coloring. Despite the doctors always telling me to not Bing (search engine) everything It gives me some weird sense of relief and annoys the doctors at the same time. I'm good at that. The conclusion I came to after 4 hours on the web was truly one of my best. So when Doctor Damico came in I was ready to impress. I asked about a certain test I had been researching and pretty much told him I figured out what makes a person hungry. If we could figure out why Paris has no hunger we could fix it, or so I thought. He was really great instead of just completely demoralizing me he just told me politely that the test was for obese people that can not stop eating. OK, I moved on as fast as I could to my next question, trying not to show my embarrassment. If any thing, all my crazy ideas and questions seem to keep the doctors on their toes. I think I actually amused him for a brief second. Anyway back to the update of Paris. She looked horrible when I first arrived but after a cold shower and about 3 cheerios we got her dressed, hair done and she wanted to walk around. She has to wear a mask because her white bloods cells are so low. So we walked around the hall a couple times looking for other children to see if they could play. It's a very depressing place to be honest. You really have to work hard to stay positive. All you hear is children crying and monitors going off and nurses and doctors talking. Maybe that's what I hear anyway. We found a radio in the play room and put on Christmas music and Paris found a game to play. I went in search of coffee. Dr. Bradeen's partner Dr. Holmans came in and told us that he is going to be Paris' blood doctor for the next week. It's hard having so many doctors. I feel like a broken record.

Nathan is at home today with all the other kids. We are taking turns with seeing Paris. That way one can go to the hospital and rest and the other can stay home and go crazy. He went to Walmart yesterday with all three. I'm really impressed. The baby ( Quinn) only had one melt down and tore down every single string cheese Walmart had. It's pretty bad when every time you go to a store you hear the "clean up on lane 4" more than once. My motto is 3 strikes or (lanes in our case) and we usually leave. Don't even bother trying to clean up Quinn is way to fast for that. When you get home you think your safe but that's when you discover you left a bag or debt card. It's pretty bad when Walmart workers actually know you and put your stuff in the costumer service knowing we'll be back in 20 minutes. You know what I do NOT understand is why any Sam's club workers would want to ever try and sell me an upgrade on my card. Do they not hear the screaming 2 year old or the hand flapping 13 year old? Are they blind to the bags under my eyes, hair all ratted and my complete lack of patience? I am not very graceful or nice while shopping. So to sum it all up Paris is a trooper and we are surviving.

B 12 deficiency or hypocobalaminemia

2011-11-26T09:10:00.000-08:00

Vitamin B12 deficiency or hypocobalaminemia is a low blood level of vitamin B12, it can cause permanent damage to nervous tissue as a long term effect. Vitamin B₁₂ was discovered from its relationship to the disease pernicious anemia, which is an autoimmune disease that destroys parietal cells in the stomach that secrete intrinsic factor.
There is no cure for short bowel syndrome. In newborn infants, the 4-year survival rate on parenteral nutrition is approximately 70%. In newborn infants with less than 10% of expected intestinal length, 5 year survival is approximately 20%.^[2] Some studies suggest that much of the mortality is due to a complication of the TPN, especially chronic liver disease.^[3] Much hope is vested in Omegaven, a type of lipid TPN feed, in which recent case reports suggest the risk of liver disease is much lower.[4

Bone marrow test done

2011-11-25T08:34:00.000-08:00

2011-11-25T05:52:00.001-08:00

Paris at the childrens hospital in Vermont on Thanksgiving 2011

Paris has taken a turn for the worse

2011-11-25T03:25:00.001-08:00

Well were in the hospital again. I guess it ok since it has been 6 years. It's alot different this time but things stay the same for the most part. They have a new way of giving meds which requires a scanning gun (like at the wal-mart check out). That is pretty amazing how the computer scan the meds and makes sure they are right and if there could be any interactions with other meds. She is pretty amazing how she can handle so much pain. They have 3 ideas what could be wrong 1. being not so bad and 3 be cancer. So were alittle on the edge right now. We spent thanksgiving with her in the hospital so we could all be together. It was fun, but I'm very ehausted from all this. She has been giving a transfusion due to her blood count being so low. Were going to have a boon marrow test today and from my understanding should have some answers from that. Paris has figured out the room service and is using it quite offened. I think she is actually enjoying her stay more than most. Her eating habits are the same. Eat, puke and eat what she likes. We are used to it but the nurses find it quite amazing. She does look a little better after the transfusion but her face is still very swollen. I absoluty love her doctors!! Her blood doctor (Dr.Bradeen) was playing I SPY with her yesterday. She a true angle from God to children. Dr. Bradeen says " she wishes there were no holidays so she could get more done". If that does not make you feel like she getting the best care in the world Nothing will!! As for me and Nathan were trying to stay as positive as posibly and be thankfull for what we do have NOT what we would like to have. My theory on life is accept what life is not what it could be, and laugh alot!!!!! Don't get me wrong I'm pulling my hair out as I write this but with a smile on my face. On a more serious note we do Pray alot and asked God to help the doctors have the wisdom needed in this time of uncertinty. We do ask others to Pray. Prayer has a power that can defy the unknown. I Belive that God has a plan and I do trust him unconditionaly.

living to the fullest

2011-11-25T03:04:00.000-08:00

Pokamoonshine Mountain is a mountain summit in Essex County in the state of New York (NY). Pokamoonshine Mountain climbs to 2,162 feet (658.98 meters) above sea level.

2011-07-18T18:59:00.000-07:00

still having epasodes of throwing up. She is looking good and has more energy. She is so little and I hope she will grow more. She just finished with softball and did pretty good. Still going to counsling for her eating disorder. She loves horeses and unicorns and decorates her room very nicly with flowers.

4-4-11

2011-04-06T10:47:00.000-07:00

Paris weight is 54 pounds and has grown 1/2 inch

Doctor.Damico has asked us to stop giving her the ducal

2-16-11 Paris up date

2011-02-16T08:53:00.000-08:00

Still no change with her eating but she does have a appoiment on 4-4-11 to see if we can put her on some growth hormones to help her development. She still complains of eating saying it hurts her belly. Having astmatic problems right now.

Michael D'Amico M.D. - Fletcher Allen Health Care, Burlington, VT

2011-01-22T17:26:00.000-08:00

Michael D'Amico M.D. - Fletcher Allen Health Care, Burlington, VT

1-23-11 Update

2011-01-22T17:18:00.000-08:00

Paris says her stomach is not been feeling good. She has just got over the flu. But seems to still be throwing up at least once a day. She find the time to play with her friends but is still refusing to eat. She still does not like anything we give her and spends most of her time sitting at the table staring in to space with a mouth full of food. We are thinking about putting her back on the meds that helped her appetite.

SHORT BOWEL SYNDRUM: EO28 Splash

2011-01-22T06:26:00.000-08:00

http://orderneocate.com/default.aspx

I hate Insurence companys!!!

2010-12-09T10:44:00.000-08:00

Why is it sooooooo hard to get what your child needs and have the insurence pay for it? The insurence company would rather spend millions on her TPN and central line but they do not consider medical food necessary. Boy I thought it would e easy sailing when the lines came out. Nope what a rude wake up call. Now she is more stable the insurence co. what to give you the boot.

2010-11-04T03:08:00.000-07:00

11-2-10 Paris weight was 51 pounds that put her in the 5th percentile for weight. Height was 0 percentile for height. Paris is on singulair and has arbitural for her asthma.

2010-10-30T06:09:00.000-07:00

On splash one week and she is looking better. Unfornitonly Splash is way to expensive. We can not afford to give her the amount she needs. Our co-pay is 20% of around 5000 to 8000 a month. I applied for help but due to our income we were denied help. You can only get help if you make less than 800 a month.

Duocal

2010-10-25T09:14:00.000-07:00

How many calories does Duocal provide?
(all measurements are unpacked)
Measure
Weight
Calories
1 Scoop
5 g
25
1 Tbsp
8.5 g
42
1/4 cup
30 g
148
1/2 cup
56 g
276
1 cup
117 g
576
Household measurements are approximations only. For accuracy use a gram scale.

bleeding gums from maulnutrition

2010-10-17T15:34:00.000-07:00

Today we discovered that Paris had a rotten smell coming from her mouth. We found her gums have started rotting. It smells like spoiled milk. I'm thinking this is a sign of maulnution.

EO28 Splash

2010-08-25T12:02:00.001-07:00

EO28 Splash, formerly Pediatric EO28, is a nutritionally complete, ready-to-feed amino acid-based medical food for children ages 1-10. EO28 Splash is available in convenient ready-to-go packaging now with three great tasting flavors, grape, tropical and orange-pineapple.
E028 has the same nutrient profile as Neocate One+ powder.
For the following indications: Gastrointestinal tract impairment, Eosinophilic esophagitis, Gastroesophageal reflux disease, short bowel syndrome, other medical conditions for which an amino acid-based diet is required.
There are 237 calories per 237ml. Serving size is 100ml. There are 100 Calories in an average serving, along with 4g Total Fat, 0g Saturated Fat, 0g Trans Fat, 0mg Cholesterol, 20mg Sodium, 15g Total Carbohydrates, 0g Dietary Fiber, 0g Sugar, and 3g Protein. It also provides 2% Vitamin A, 5% Vitamin C, 6% Calcium, and 4% Iron.
EO28 Splash - Main Features:
100% free amino acids
Nutritionally complete
Convenient ready to feed 8 fl oz Tetra Pak®
Flavors: Grape, Topical Fruit, Orange-Pineapple
Standard dilution = 1 kcal/mL
Osmolality = 820 mOsm/kg
Energy distribution:Protein 10%, Carbohydrate 58%, Fat(MCT 35%/LCT 65%)32%
EO28 Splash - Indications:
Gastrointestinal tract impairment
Gastroesophageal reflux disease
Short bowel syndrome
Other medical conditions for which an amino acid-based diet is required
EO28 Splash - Preparation:
Intake to be determined by a medical professional and is dependent on the age, body weight, and medical condition of the patient. EO28 Splash may be administered as a tube feed. Shake well before use. If taken orally, best served chilled.
Do not use a microwave oven to warm formula.
EO28 Splash - Storage:
Store unopened product in a cool dry place. Once opened, EO28 Splash should be stored in a refrigerator and kept no longer than 24 hours. Do not freeze EO28 Splash.
EO28 Splash - Ingredients
Grape: Water, Maltodextrin, Sugar, Fractionated Coconut Oil, Canola Oil, High Oleic Sunflower Oil, L-Arginine, L-Lysine L-Aspartate, Microcrystalline Cellulose, Malic Acid, Calcium Glycerophosphate, L-Leucine, L-Phenylalanine, L-Proline, L-Valine, Glycine, L-Isoleucine, Mono and Diglycerides, Diacetyl Tartaric Acid Esters of Mono and Diglycerides, N-Acetyl L-Methionine, L-Threonine, Dipotassium Phosphate, L-Histidine, L-Serine, L-Alanine, Tripotassium Citrate, Artificial Flavor, Fractionated Coconut Oil, Palm Kernel Oil, Magnesium Acetate, L-Tryptophan, Choline Bitartrate, Calcium Chloride, L-Tyrosine, Trisodium Citrate, L-Ascorbic Acid, Sodium Chloride, Artificial Sweetener (Acesulfame K), L-Cystine, Taurine, Ferrous Sulfate, Zinc Sulfate, L-Carnitine, M-Inositol, Chromium Sulfate, Niacinamide, Manganese Sulfate, Cupric Sulfate, Vitamin E Acetate, Calcium D-Pantothenate, Pyridoxine Hydrochloride, Riboflavin, Vitamin A Palmitate, Thiamine Mononitrate, Sodium Molybdate, Potassium Iodide, Folic Acid, Sodium Hydrogen Selenite, D-Biotin, Vitamin D3, Cyanocobalamin, Phylloquinone.