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!!!

surgery pics

After Suregery 1/28/13

 

 Since surgery and coming home, Lyla has been doing great!!!

Her bowels are working and she has made her way up to 30mls/hr feeds mixed at 28cal.

She is taking some food by mouth, and a swallow study showed she no longer need thickened liquids.

 

Post-Op Poop & Liver Biopsy Results.

Lyla is a week post-op and feeling tons better, she is up and walking like a champ.
She was vomiting a lot at first, but it as slowed down. Her body has been producing a lot of fluid in her stomach, which is making her stomach up set.
She started pooping on Wednesday, and now almost every diaper changed has poop. Life with a short gut!!!
We attempted to feed her on Friday. Very slowly 3ml/hr, and it only lasted 3 1/2 hours before we had to stop feeds and drain her stomach again.  Over the weekend we drained her stomach off and on, not eating or anything, just a closed g-button for a few hours, then drain for a hour. Her body can produce a lot of fluid within just a few hours. I have no idea where its coming from!!?!?!  Surgeon says"Its just a thing short gut kids do" I've never heard of such a thing. For example Lyla's stomach was empty. Then got 3ml/hr of pedialyte for 3 1/2 hours,   3ml/hr X 3.5hrs= 10.5mls, so there shouldn't be more than 10.5ml in her stomach.  I checked her residuals (what was in her stomach, which I can suck everything out of her stomach with a big syringe through her g-button) There was 60mls in her stomach. Although she's been having so much mystery fluid her surgeon wanted to try feeds again today. He really wants to push her this week, because its been long enough he isn't worried about the hookup, in term of it healing. If we make no progress this week then she will get another barium enema to check for dilation, narrowing, blockage, & movement.  We started feeds, 2ml/hr, this time of half formula & half pedialyte. She vomited shortly after starting it, but  the doctor really wants to push her, so we kept it going, it ran for 2 1/2 hours, and we are giving her a hour break off, because she is so uncomfortable, screaming crying. We started feeds again a hour later and she vomited about a hour after that, then again a hour after that. So we stopped feeds once again & will see what happens!!


We got results back from her liver biopsy. There is the expected liver fibrosis and inflammation due to TPN & Lipids, but also from another source. Could be from a viral infection, autoimmune disease, or  less likely drug metabolism. Lyla had a large blood panel drawn, testing for HIV/AIDS, Hep B & Hep C. because she has had 14 blood transfusions. Doing multiple labs to check for autoimmune diseases, like autoimmune hepatitis, where the immune system attacks the liver. All labs are still pending, and I am anxious for results. Her liver damage is at stage 2, meaning enlarged, inflamed and bridging fibrosis, but not yet cirrhosis.

Recovering!!!

Our Monday morning started early. We woke up, Lyla was happy. Dancing around, holding her picture of her Yaya and herself when she was in the NICU, saying " Hi Yaya, I love you" We loaded up the truck with all our stuff ready for our stay at Cooks, we got there at 6am. Lyla was a big nurses helper. Helping put on the bracelets on herself, me, Trevor, and even her Elmo. Talk with anasethgiologist, Dr. Iglesias, went through all the questions, and signed consents.  Dr. Iglesias loves Lyla's Socks For Surgery socks that said "Alright Dr. Iglesias, but this is the last time" and her shirt that says "Dr. Iglesias is fixin my guts".  Lyla got some giggle juice to help with separation and after is kicked in, she was talking silly. She said "I love you", and they took her back.  Surgery lasted 2 hours. Dr. Iglesias came out and told us everything went good, he measured 90cm of small bowel, and her colon looked good. They did the liver biopsy, and gave her a fresh new g-button. The great news was she didn't need a blood transfusion.  She was in recovery for about a hour before we could go see her, and it wasn't long after that, she went up stairs to her room. it was rough keeping her pain under control. Around 8pm she still hadn't peed since surgery, so they decided to do a quick in and out catheter to drain her bladder. Lyla had gotten a caudal epidural, so she was numb abs couldn't go on her own at first. They drained out a whopping 7+oz of urine, poor baby was full, after that and getting a dose of pain med, she slept for about 4 hours straight. She had labs this morning, her blood count was a little low, not bad, and is normal after surgery. Today was much better, pain was under control for the most part, just one time we were waiting a while for pharmacy to send up the med. We were able to remove the tube that was in her nose, sucking her stomach. She still has it draining out of her g-button, and will for a couple of days, before they start feeds. We got her up out of bed to stretch, it hurt, but we had to, she walked a few just a little bit. It was a good 2nd day!

Surgery Soon!

Hey  everyone! First off, I want to say thanks everyone that follows Lyla's journey! Thanks for all your support & prayers.

Since we've been home from the feeding program, Lyla has been doing well with eating and drinking.  Trevor, Lyla and I all caught the flu a few days before Christmas, but it really didn't phase Lyla that much and we were feeling much better by Christmas day. The day Lyla's daddy proposed to mommy 😍 6 1/2 years and a Lyla later 😉 
 I hope every one had just as great of a Christmas as we did. We were very fortunate to have Avery's Angels Gastroschisis Foundation sponsor Lyla's Christmas, and wonderful families donated gifts to her! We are very Thankful and Blessed!!! December and  January  have been very busy for us... heck we've been busy since September.  Lyla had an Appointment with her surgeon, Dr. Iglesias, on Dec 10th and decided it was time to reconnect her bowels and get rid of her ileostomy bag. We scheduled a barium enema, to check for a narrowing or blockage in her colon before they hooked it back up. On Dec. 26th we saw Lyla's GI,  Dr. Keng.  She believes if the surgery is successful and Lyla continues to tolerate food as much she has been, then Lyla could be TPN free by her 2nd birthday.  That would be a miracle.  Seems how Lyla hasn't gained any weight since July, when they bumped her TPN down to 8 hrs. 
Since she hasn't been gaining Dr. Keng changed Lyla's oral liquid intake to Pediasure Peptide, a high calorie/protein drink, in place of Elecare Jr.  & Pedialyte.  At first Lyla didn't tolerate and it was making her vomit up her meals as well.  So I started mixing it with pedialyte to half strength, along with nectar to thicken it. She can tolerate half strength, so that's what she's been getting. She is continuing to get speech therapy 3 times a week, and occupational therapy, once a week.  She had a follow up swallow function study done in Jan. 15, and she swallowing has improved but not great yet. In observation of 10sips of half nector thick (half less thickner than she's use too), she only had a small penetration once. And it was her very first sip. In observation of 10 sips of thin liquid (without any thickner) she had 5 deep penetrations, and no control over the liquid. So in results we have gone down to half nectar thick, will continuing oral motor skills, & have a follow up swallow study in 4 months.  She did very good drinking the nasty chalky barium dye for the X-ray... She actually loves it 😝 and didn't want me to take her cup away!  I was glad she wasn't traumatized from that radiology room, because just a week before that she had her barium enema. She was not happy at all while getting the BE.  The results were good though, everything went through smoothly. Which means there's a chance the colon could still work. The radiologist estimated Lyla to have about 10cm of colon, just by looking at her BE video and the amount of dye that was used.  An average child the same age would have triple that amount.  She had another appointment with her surgeon after the barium enema, to talk about the results. He decided to go with Plan A, to reconnect her bowels, without removing the large bowel, only removing minimum off both ends for a clean connection. He said he will accurately measure both small an large bowel while he was in. I have been doing distal refeeds to Lyla (putting stool through her colon with a catheter) to keep her colon "happy"  & so far the results of that haven't looked great to me. Its suppose to come out of her bottom, but rarely does, and when it does, it's bloody.  The surgeon says the blood is just from no being used enough, it's not "happy". Another concern is the rash around Lylas stomas, it's been there since I can remember. Imagine horrible raw diaper rash, but on her tummy where her surgeon is suppose to make an incision, and a nice clean, straight/small as can be scar. The rash isn't huge, but he will have to remove that skin if it isn't healed by surgery day. It may sound easy, but if it were, the rash wouldnt be there for as I can remember. There isnt much you can put on a stoma rash without the bag falling off, just powder and spray, then no matter how almost healed it is, as soon as the bag leaks, the rash gets worse. She also will get a liver biopsy during surgery.  For the biopsy, they will cut & remove a tiny piece liver, then insert a long needle to collect a sample from the inside. She needs this done to be able to really see how bad her lover damage is, her numbers have been elevated for a while now, so her doctors want to check it out.  We had to reschedule surgery to 6 weeks after Lyla was diagnosed with the flu, because anesthesiologist will not put her under until then. So Jan 28th is the date, we just have to go one more week without getting sick. 
Got a call from Lyla's GI with her weekly lab results. White blood cell count is low, so she's more prone to get sick... And of course she started to get a sinus infection, but I took her into the pedi's office the day she started to cough, they gave her antibiotics, and she has been fine eer since. Also got the lab result that her bleeding time was elevated to the 3rd week in a row. Bleeding time meaning, if Lyla's central line were to get ripped out, or if se were to get cut badly, then she would bleed out faster than someone else. With surgery right around the corner, we started vitamin k orally to try and get her levels back down, she already gets vitamin k in her tpn, because we have had bleeding time issues before.  Dr. Keng contacted Dr. Iglesias to let him know about the bleeding time. I'm sure they will have Plenty of blood transfusions on standby, seems how Lyla always needs a transfusion or two during/after surgery anyways. 
We have one more lab draw today to check levels before surgery. After being on oral vitamin K, I hope her levels have gone down.  Just 7 more days and we will be living at Cooks once again. Theres no telling how long we will be there this time. Come visit us!!!  We do not know yet what time surgery is, we will get a call in a few days with times and instructions.  It's been a long wait, and we are so ready. Lyla has gotten quite a few goodies for this stay. Two custom hospital gowns, one turtle that was donated by Gracie's Gowns and one Elmo from Tubie Whoobies, also a Emo tubie whoobie g-button pad, She's gotten a sesame street pillow case, mommy made her sesame street bed bumpers, & blanket. & she's got her "Dr. Iglesias is fixin my guts" onesie & "Alright Dr. Iglesias, but this is the last time" socks for surgery. She is set!!! Now to just sit and listen to the clock tick!