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!!!