Home again!!!

So Lilia was released this afternoon, and the other 2 kids came back this evening from the grandparents house. So me and lilia had some alone time, she had a bath and i removed about 10 bandaids from her poor little toes and fingers.

its a little sad i dont have any pics of this hospital visit, I couldnt find the camera..although i did get a few shots on my phone. But they arnt very good.

We then went for a little walk, and got caught in a sudden downpour...ugh I feel like the worst mom ever. But she didnt get too wet actually..it was mostly me, and i warmed her up quickly when we got home.

So her feeds are still ebing run slow, they take about 2 hours each instead of 1. However we are slowly weaning her back to blois feeds and she should be back to her normal feeding schdeule by monday. If all goes well then tuesday we will slwoly be switching her formula from the good start baby formula, to a toddler tube feedding subblment instead. It was time for the change..she couldnt get enough nutrients at her age from the formula anymore.

Lilia also cant walk right now, which is very sad to see. She cant stand for more then a second before falling over...I want to get PT involved to help us, becuase I dont really know how to get her back walking. I know its becuase shes weak from losing so much weight, and also from being in bed for 2 weeks...3 weeks really since she was so sick at home for that week before she was even admitted.

Anyways though she is so much happier to be at home.

Still in Hospital

So Lilia is still is hospital, almost 2 weeks now. We have started her feeds now, slowly but getting the same amount throughout the whole day. She was on TPN through the IV, which she hasn't been on in a long time. Since she was an infant.
We still dont have the type of salmonella, but at this point shes already being treated for antibitotics for 9 days i think so no matter what it turns out to be shes probably just about done the antibitoics anyways.
hopefully her gut can toelrate the food, and then hopefully she can come home. Since right now our time off is unpaid...which is very hard on us.

It turned out that i DONT have salmonella, I was in the hospital for 2 days myself and they thought I had meninigits...after a LP and a bunch of other tests it was ruled out and I was sent home. it was not a fun time though, I am starting to feel better now though.

Salmonella

Well we found out the other day lilia has salmonella. They are still waiting on the type before they treat though. Apprently some are more severe then others. Usually they dont even treat it, jsut keep the child hydrated till its gone, but becuase shes immune compermised its a bit different. She also has pnemonia, but we beleive we got it really early..she doenst even need O2..but she is on antibitocs for it.
She blew her IV yesterday, her poor little hand was so swollen. The nurses on the floor dindt see anything so they got the team from the ICU to come up and do it. She tried 3 times to get it and couldnt. So they got 3 doctors to try and still no luck...her veins are pretty much no good now since they poked her way too many times. They were going to have to put a central line in, becuase shes NPO (no food) and had to have an iv becuase of this. Whcih they would of done is ICU..howver the ICU doctor who would of done it wanted to come up and try and finally after a few tries he got a line in! So no central line..which is great.

So back to why shes NPO after we had tried to get her feeds back up to normal. Me and brant noticed that her tummy seemed bigger, and told them. they didnt really think anything of it, said it looked fine. but decided to do an x ray mostly to amuse us I think. However the X ray came back that she has a lot of gas pockets in her intestines..so much that they are worried shes going to perfierate a bowel. So they quickly stopped all food, and are venting the gas out through the G tube. However its so much that surgery is checking on her every day, they are afradi she will rupture her colon and need surgery asap.

they are taking x rays every 12 hours to make sure shes improving..and so far she is. So we are really hoping that she will improve enough and not need suregery. however she will be in hospital untill all this is better..which could be quite a while.(keep your fingers crossed that she gets better fast so she can come home soon)

Also shes lost a lot of weight...she was 27 lbs before she got sick..now only 2 weeks later shes 22 lbs.

STOP POKING MY DAUGHTER

So they are still having some isues with her elctrolites, so they had to poke her a few times. Seriosuly though we came back from brant picking me up from work and she had 4 poke marks on her hand, 1 on her arm and 2 in her feet...does she look like a fricken pin cushion?? She was pissed too...cried when she saw us. probabaly becuase we left her alone with somone who just poked her the whole time.
then that night they had to poke her again and decided to do a finger poke..had to poke twice to get enough blood (she clots fast) and then we finally got her alseep for the night left, called in to check on her only to find out they are in her room poking her again! the finger poke wasnt accurate so they wanted a vein blood sample..ugh. and she told me she had to poke a few times to get it...she has small vens that like to roll.
So brant went back to comfort her, and she went back to sleep pretty quickly.

So other then her being miserable and starting to hate nurses..shes doing ok. not much change other then they started her back on pedilyte..they want to get that gut going again. She toelrated it fine..although shes still on the anti nausesa meds, they dotn want to risk her throwing up right now beucase she needs to try and get some food into her, I am hoping that they will try her on her formula soon...she hasnt tolerated any in like 12 days..i dont even want to know where her weight is at.

Lilia admitted again...

So it seems I never updated her blog after she was released from the hospital the last time...
well she was admitted to hospital again on saturday. She was very sick for 9 days..couldnt keep anything down, very bad dierreah, just laying around with a very vacant look in her eyes. She wasnt ehrself at all, not even her sick self (where shes tired and grumpy but still smiles somtimes and plays in bed) so we took her to the ped twice during this 9 days of sickness and the ER once. They said just to keep her hydrated as much as possible with pedilyte. that we were doing fine..they did not tests though.

Finally saturday 10 days of being so sick we took her back to the ER, they finally did some blood work and started an IV. the docotr wasnt going to, but the nruse stood up for us and inisted. When the blood work came back it shwoed all ehr electrolites were severely out of wack...which we also found out caused her bowels to shut down and stop working. Which is why she was having such watery green poops. Also her sats were in the high 80's, they did a chest x ray and her x ray was clear. basically she was so dehydrated that it was affecting her breathing.

Shes on the floor now, D7-210 in case anyone wants to visit. And after being on an iv for 2 days now and some strong meds to help with the throwing up, shes doing a lot better. Shes acting like her sick self, which is better to see. they also cathed her to check for an UTI (apparently her bowels shutting down can cause UTIs which would explain why shes still throwing up, and having fevers) they also collected stools to check for C difficule and other things..

So hopefully we'll get to the bottom of this and she'll be home in a few days.