LYLA AND HER MAKE A WISH STORY

 LYLA AND HER MAKE A WISH STORY

Lyla's History

        Lyla was born at 31 weeks gestation, with Gastroschisis, a hole in her abdomen wall causing her intestines to be on the outside of her body.  She endured surgery immediately after birth and everything was supposed to be okay. "Out of all the birth defects this is the one you would want" said doctors. But Lyla wasn't okay, 80% of her small intestine and 80% of her colon had to be removed, leaving Lyla with Short Bowel Syndrome and that is a list full of life long problems. The first 3 1/2 years of Lyla's life were a very tough on the whole family. Lyla has been under anesthesia a total of 13 times, 7 of which were major intestinal surgeries. Lyla's body cannot absorb nutrition like you or I. So she's had to use other resources to keep her alive. She has had a feeding tube straight through the abdomen and into her stomach ever since 2 months of age. She lived a year and a half with a ileostomy bag to collect her waste. And the first 3 1/2 years with a central line, a permanent IV in her main heart artery which infused nutrition straight into the bloodstream. Lyla was mostly in the hospital as a baby and toddler, with complication after complication. They worked as best they could to get the remaining of Lyla's GI track to work well enough to be able to remove the IV nutrition that was keeping Lyla alive, but at the same time it was destroying her liver, and causing multiple life threatening blood infections.  Lyla has always in her life had intestinal bleeding. It was never visual blood or very bad until just a few months before Lyla turned 3. She started having heavy bleeding, and needed blood transfusion frequently. She had a gi hemorrhage for a total of 8 months. We sought a second opinion, and this is when things started getting better. They found 12-15 bleeding ulcers in Lyla's small bowel and started a treatment soon after. They weaned unneeded medication, made some changes to Lyla's diet, got her gaining weight and started to wean her IV nutrition. After not even half a year with the new doctor and Lyla was doing much better, but they couldn't wean the IV nutrition fast enough. In September 2014 Lyla got yet another a blood infection, but hopefully her last. The infection forced the doctors to remove the IV line from her chest, and since Lyla was doing so well prior to the infection instead of undergoing surgery for a new one they decided to first try life without it. And that was Lyla's last night in the hospital!

                                                                                                               

  "I wish to go to Disney World"

 

      

It was November 2014 when Lyla had her wish granted through Make A Wish North Texas.  First was the letter in the mail saying she qualified.  Next was the wish grant, accompanied by her mom, dad, and a couple of MAW volunteers; Lyla got to enter a magical wish room where she first pick out a couple of toys, then hung out with her wish grantors so they could get to know Lyla.  They found out she likes all things Disney, especially all Pixar films, Goofy, Donald, Jake and Peter Pan.  Lyla talked about who she wanted to meet, and what she wanted to do. Disney World in Orlando Florida seemed like the perfect wish!  The date was set for Nov. 28th - Dec. 4^th; a seven day vacation of Lyla's dreams. It was all surreal for her parents whose only job was to pack. Make A Wish took care of everything. Parking, airfare, spending money, food, rent car, & lodge. The family soon learned that they would be staying at Give Kids The World; this is an exclusive wish kid resort with everything you can think of. Each family gets their own villa, meals 3 times a day, free ice cream, pools, putt putt, arcade, kiddy rides, parties every night, daily gifts, characters, and much more. When Lyla and her family arrived they were given tickets to Disney World, Universal Studios, and Sea World. Lyla's favorite parts of the trip were meeting all the characters, especially Jake and The Neverland Pirate and Peter Pan. She also enjoyed riding all the roller coasters she could. She had front of the line pass for meet & greets, as well as rides and shows. She had 7 busy, fun days, and I think most of them started and ended with ice cream!

       

          

  Lyla Now

Lyla is doing fantastic! She just turned 4 in March and celebrated with a Pixar birthday party. She just finished a season of tee ball and is in preschool now. Health wise Lyla is doing phenomenal, just dealing with some vitamin deficiencies and managing to keep her blood count normal. She only has to see the doctor every 2 months now and each visit they wean even more off of her tube feeds. She is eating very well by mouth now, and seems to be absorbing nutrition well. Nothing has ever truly held Lyla back, whatever complications occur, she defeats them. She is a superhero!  Lyla's trip to Orlando Florida was only the beginning to her Make A Wish experience.  “Once a wish kid, always a wish kid”. Lyla has been able attend several other local events, like the Stock Show Rodeo through Make A Wish. Before Lyla's family left Give Kids The World they also received an Around The World Amusement Park Passport.  This is a free one time admission to all sorts of amusement parks around the world, like Six Flags & Shlitterbahn, and it’s good for one year. Lyla's family plans to use this pass multiple places this summer and fall. Lyla's first few years of life may have been full of medical procedures, and nights in the hospital, but the years to come will be filled with great surprises, thanks to Make A Wish.

LATEST TREND RESULTING IN INFANT DEATHS!

CAN YOU BELIEVE WHAT THESE CELEBRITIES AND ATHLETES ARE DOING???

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Kizoa slideshow: Latest Trend Resulting In Infant Death - Slideshow   <<<Click here for mobile viewing!


PLEASE TAKE A MOMENT AND SIGN THIS PETITION!
http://www.change.org/petitions/facilities-who-use-crucial-ingredients-found-iv-nutrition-for-personal-gain-cease-all-activities?share_id=QxLZTaVhtI&utm_campaign=share_button_action_box&utm_medium=facebook&utm_source=share_petition

Healthly people can walk into a medical spa and order a cocktail that uses crucial ingredients that are currently in drug shortage.  Manufactures can not keep up with demand, and these spas don't have the same protocols and regulations as the hospitals and home health companies, they are able to buy the drugs easier, and don't have a limit. Manufactures sale to certified pharmacist, but they don't know where the drugs go from there. The FDA doesn't have any authority to regulate where these manufactures sale too. A few of us moms had a discussion with one of these medical spas pharmacist.  He was convinced that he bought from a manufacture that wasn't contributing to the drug shortage, but once stated their manufacturer, he learned that they are in fact a major company contributing, He deleted his messages and blocked us all.  

People are forced to go without the drugs they need to survive, forced to use substitutes that are not up to par. Imported from other low grade manufacturers in other countries.  There have been reports of rust in drug vials, glass in saline, and some manufacturers not using sterile equipment.  There has been at least 15 deaths because of this, but it can be hard to pin point the cause to infections, and us parents have seen for ourselves.  When our medical kids go without, they downhill fast. A while back ago Lyla had to go a couple of months completely without multivitamins. this was a time, that she wasn't able to tolerate much feeds, and she was not absorbing the oral vitamin she was giving, it went right through her. She lost weight, was fatigue, irritable, and wasn't acting herself. Once she started receiving multivitamins again, she as back to her happy, playful self.  Lyla has been on an adult multivitamin for the majority of her life, we haven't seen a pedi multivitamin in over 2 years.  When our babies are forced to use drugs for adults, then there is a higher risk of overdosing. I have witnessed babies almost go into kidney failure because they were not able to get the drugs they need.  I have friends whose babies and kids die from blood infections that could have very well have been contributed by these low grade manufactures.  & Hospitals don't typically tell you when a drug is missing out of your tpn or if they are using substitutes.  Right now many of our kids including Lyla are not getting correct amount of trace elements in their TPN. Some patients are only given enough doses for 3 days a week, when they are on TPN 7 days a week, that means 4 days out of the weeks they are not getting the drug they need.  THIS IS REAL PEOPLE!  Although these medical spas are not the only problem, they are contributing! and If we can get them to stop with these unnecessary treatment, then maybe these drugs will be sold to places who truly need them!!!   #STOPTHEDRIP

                     

HAPPY AT HOME

Lyla came home yesterday with her tube feeds at 25ml/hr for 17 hrs & TPN &Lipids at 14hrs. She is doing great, today I increased to 30ml/hr and she will say there over the weekend. Then I will increase slowly no more than 5ml a week towards full feeds! Full feeds the correct amount of formula/calories for her weight to get off TPN & Lipids!!!  

I have a few photos for you all tonight!! I haven't been able to upload any in a while.

TPN & Lipids, formula, & all meds that Lyla's receives daily

This was before her surgery

Just out of surgery

Her healing tummy!!

11 days post op and she's strides riding around the hospital.

Doctor Lyla

STEP PROCEDURE

Lyla was admitted again the end of July with the same ileus/blosckage issues she was have in June. They rested her gut, and did Sonogram,Upper GI, and Barium Enema again. All the doctors knew we had talked about surgery our last admission, but Lylas surgeon was out of the country. The surgeons felt nothing emergency needed to be done, but they lowered Lyla's feeds tremendously and she was sent home and scheduled an appt. with her surgeon a couple days after. He also felt since Lyla was doing somewhat better with her feeds lowered that he did not want to operate unless she continues to have issues.

Well not even  weeks after that discharge, Lyla was admitted once again on Aug 17th, this time her vomiting was worse and she had stopped stooling completely. She had a sonogram that confirmed we were dealing with the ilues, the same part of dilated bowel as the last couple of admissions. They stopped her feeds and put a nasal gastric tube to suction her stomach, we also drained her gbutton.  This time I knew she would be having he STEP procedure. 

The STEP Procedure makes the dilated bowel thinner and longer. Which is exactly what Lyla needed because when that part of Lylas bowel would get full it would not push things through, it would just stretch width wise like a balloon.

on Aug 21st  she went to OR for her 7th major gut surgery. This one being the most major of them all. The surgeon was able to give her 7 steps which gave her an addiction 20cm of small bowel.  So her total now is estimating around 143cm.

The first couple of days post-op were very rough, she needed oxygen, had fever and we had a hard time controlling pain. We had her up walking only 15hrs post-op which is very important for hr to get up and move around as much as possible, so that the scar tissue doesnt form and her bowels get moving. She was doing good and willing to walk by Saturday morning, but then sh started being lethargic Saturday afternoon, hey checked her blood count and it was pretty low, but not transfusion low. She continued to be puny Sun - Tues morning, but started acting a little like herself Tues afternoon. And today, one week post-op, has been a good day.

The hardest part is pain control,  It took a few days to get her to a regimen that worked for her, which was continuous Dilaudid drip with pain button and bolus dose as needed along with Tylenol every 6hrs and Toradol every 6hrs staggered 3hrs from Tylenol.  but then they needed to start weaning pain meds. Which is important for her bowels to wake up & also important for her liver and kidneys.  She is down to just her pain pump button as needed now, which shes needed every hour. Yesterday She had to get a new IV in her wrist because the one inher arm had gave out, yesterday they also removed her ng to suction, and today they started clamping her g-button for 4 hours, then draining for 4 hrs & repeat. That way she is getting some stuff through her bowel but not a lot. Shes been having some small vomiting (mostly mucusy) since surgery. but she also had he tube down her throat which caused a lot of irritation.  Surgeon is looking into starting a little feeds here in a couple of days as long as she isnt continuing to vomit, and if her xray looks good. It will be a sow start, but as soon as she starts something, then she can have oral pain meds, get rid of the extra iv in her arm, and cut back even more hours off TPN.  She will be back to my backpack baby!!!

No surgery needed & going home

Lyla started pedialyte a couple of mornings go, and she got back to her normal tube feed &TPN regimen within 32 hours. She did well with no vomiting, except last night & this morning. she is passing things through fine.  They started her on  Xifaxan for bacteria overgrowth, and Bethanochol to help with bowel motility. Doctors origanally did not want to try and treat her UTI, because of the chance that she would only become immune to the antiotic. But now they decided to treat it with oral Cipro, which has a good prectage of being affective with esbl-uti. 
 She did have another urine culture collected yesterday, because the first one grew, but then after being sent off for more testing it was inconclusive. The rusults came back today, and t was comfired Lyla does have ESBL. It's a very good thing that Lyla didn't need surgery, for the obvious reasons, but also because of the risks of ESBL  getting into her bloodstream, and infection. Its scary enough with her having a central line. I am still am not sure what future holds. They can treat this urinary tract infection, but the ESBL would still be there. If a healthy person was colonized with this superbug, they probably would never even know they are a carrier, but for someone with a weakened immune system, chronic ill, or elderly, It can be deadly if in the bloodstream. & I hate that!!! Lyla's surgeon and I talked about surgery in the future if Lyla continues to have flare ups that result in dilated bowels and needing bowel rest. He would be able to do what is called a STEP Procedure, which is one way to manage short bowel syndrome. Its a procedure to lenghten the small bowel, but can only be done when the bowel is dilated enough. We have talked about this procedure multiple times since Lyla was born, and if she did end up needing surgery last week, then the surgeon would have gone ahead and did it. One, because he would have already be in, two, her bowels were dilated enough to do it, & three, she could benefit from it tremindiously. That would be taking BIG steps back, so that we can move forward in the long run. But thats future talk! For now, Lyla is doing ok, we decided to go home today, even with the vomiting, inhopes that the new meds & antibioics work and make her feel better. Its possible the UTI is whats causing the vomiting now. As long as she is keepng down the majority of her feeds then we should be able to manage it at home.

Surgery with ESBL

Have you heard of the new superbug called ESBL??? Different from MRSA & C-diff. Because it does not refer to one specific kind of bacteria. Instead it refers to an antibiotic-busting enzyme that many different kinds of bacteria can produce. It make the person immune to most antibiotics And it produces Gran Neg Rods and Gram Pos Rods, most common E. coli. And can cause UTI's. Different strains of ESBL can be immune to different antibiotics, so they do a "sensitivity" test to discover which antibiotics its susceptible to. Sounds dangerous right? Defiantly for a central line kiddo don't ya think? Well guess who has it!!! My little Lyla!!!

And on top of that, she is needing surgery tomorrow for a partial bowel obstruction!  Can we ever catch a break!!!

It all started late Wednesday night (May 29th) She was fine during the day, we took Lyla to hr first Texas Rangers game that night, only to stay for a hour before it got postponed due to rain/storms.  So we headed straight home and Lyla was passed out asleep in her car seat by time we got there. I tucked her into bed and she was fine, a couple hours later when I went lay down She felt hot to me, so I took her temp. She didn't quit have a fever, but I knew it would be there soon. I laid down and managed t get a couple hours of sleep before I woke up and checked her temp again. This time she was running a slight fever 38.0c (100.4f) with her having a central line that mans I had to take her straight to ER. I gave her some Motrin and we were on our way out the door and she vomits everywhere!

We got to Cook Children's at 1:30 in the morning, and went straight back as always with a central line.  They did labs & blood cultures right away. We sat there foe quit a while waiting for something.  Lyla laid there struggling to poop for a little bit, but finally did.  I didn't think much of it once she went.  Her fever wouldn't go away with the Motrin I gave her, and ER gave her some Tylenol. The doctor decided to admit her to wait for the culture results and start antibiotics. She was put on two antibiotics to fight both gram pos rods & gram neg rods. The first couple of nights were horrible. Lyla's fever wouldn't break, she was stooling frequently because of antibiotics, and constantly complaining that her tee tee hurt. We both didn't get much sleep. Lyla's fever broke& they did stool and urine cultures on that Friday. 

On Sat the GI doctor came in and told me that her blood culture had grew gram neg rod. I thought "that explains it all" and was waiting for the Infectious Disease doctor to come by our room to talk about treatment plan, but instead of treatment plan, she said we could o home. I was in shock and said "but we just found out her she has a blood infection".   The doctor said "no she doesn't, it was er urine culture that grew"  The GI had made a mistake, he misread the urine culture for the blood culture.  "So she has a UTI" I asked, and the doctor said "It was probably a bad urine sample and even if it were she was getting the right antibiotic to treat it"  The doctor wanted to send us home without antibiotics, I was still in shock, my mind going from thinking she has a blood infection to going home.  But my gut was telling me something. I seriously felt sick my stomach, and the ID doc and nurses probably thought I was crazy because I wasn't super happy about the good news. They were like "hello, shes fine, she doesn't have a blood infection".  Later that evening around 4pm, the GI came in and apologized for his mistake, and was going to discharge her, but then decided her wanted to watch her one more night to make sure her fever didn't come back while off antibiotics. Her culture was only 2 1/2 days of growing, so there was still a chance she could have and infection.

That night Lyla started vomiting a lot, and complaining of belly pain.  So the doctor decided to keep her Sunday night as well. She was fine during the day, but around 8pm she started vomiting again, and all through the night. Once again the doctor wanted to keep her. We thought maybe it was the multi-vitamin in her TPN that was making her nauseated, because she went almost 2 weeks at home without it due to the drug shortage. With it being one of the only changes made lately, we thought we would try the night without in in the TPN. 

It didn't matter that that the MVI wasn't in the TPN. She was vomiting Monday night as well, but worse. this time she was vomiting bile, and even vomiting stool. That was a very bad sign.  She keep telling us her belly hurt, She got a xray that morning (Tues.) and It looked very gassy. Doctors continued to watch her, and she continued to vomit bile. they scheduled a upper GI contrast study for this morning (wed).  We wee also told that Lyla's urine had grew ESBL and she had to go into contact isolation, which means she cant leave the room, which s very hard for a 2 year old to understand. she doesn't want to just set inhere all day... I don't either!

She got to get out for a little bit, but only to go down stairs for her contrast study. Shes had them done multiply times, so I knew what the partial obstruction as soon as the radiologist did the xray video.  I could see the narrowing of the intestine, and the dilated part of her bowel. I didn't need anyone to explain it to me, heck I explained the xray image to the charge nurse. I knew a partial blockage meant very possible surgery. Its not Lyla's first bowel obstruction,I knew it was bad news, But It didn' really set i until the surgery team came in and said she was going to have surgery.

Her 8th surgery at that!!! Why at this resent surgery clinic visit did Dr. Iglesias have to say he thinks her socks were right... the Socks 4 Surgery sock, you know the "Alright Dr Iglesias, but this is the last time"  doesn't he know your not suppose to say stuff like that!!! She's been doing so well since her last surgery, but scar tissue got the best of her. Its gonna be a never ending battle with adhesions.

So now she is NPO (no food), her stomach draining on gravity, and her TPN is back to 24 hours. The plan is to have a xray in the morning and go from there. Dr. Iglesias was at the Hurst clinic all day today, so he has not had a chance to go over Lyla's xray images, or see her. He did tell his surgery team "with her history it is most likely scar tissue or the reconnection sight is narrowing and needs to be surgically fixed" I think the only way she could get out of going to surgery s if the xray in the morning magically shes a huge improvement. but by Lyla's intake & outtake sheet, that's not looking highly, because she has almost stopped stooling completely.

She needs to get through this without any infection problems, because antibiotics are pretty much worthless to her at this point!!! Please keep her in your thoughts and prayers!!!

Lyla's 2nd Birthday Party

For Lyla's birthday party we decided to go with a Lyla's World/Elmo & Friends theme, since Elmo is her all times favorite!!! I pinterest a lot of ideas, and had a couple of friends donate some of thier left over sesame street party decor. We had the party at a local cafe in the back patio.

 

I made her a wreath for her hospital room door and also for her party. It turned out perfect!!!

 the goodie bags consist of Sesame Street charater sock, bubbles, bouncey balls, frisbees, kazoos, party blowout horns.

There was a candy bar, party hats, and even a real life Dorothy the goldfish!

 The cake was donated by Icing Smiles. A non for profit organization that donates cakes to medically dependant/hospitalized kids.

 I made a framed number 2 out of buttons, and it turned out so cute!

 Oscar veggie tray & Elmo fruit tray were easy to make. Broccoli, carrots, olives,  and ranch for Oscar. For Elmo I used strawberries, bluebarries, mandarine oranges, and whipped cream

  Goldfish crackers (Elmo Loves His Goldfish), Cheese balls (Elmo's Nose), & Cookie Monster Cookies

 (Big Birds Nest) Tortilla Bowl Style Chips

 Lyla's Dress was custom made by Poppy Petals & Lotus Leaves, and her necklace by Le Bebe Bowtique

I made her Elmo doll, before her surgery. She loves it so much, and was carrying it around during much of her party.

 

All and all the party was a success!!! she had tons of friends & family!!!