Trying to keep going......

Haven't felt much like blogging. So much going on that is taking me a while to process. I am just going to spit out the short version. Celia has gone backwards since coming home from the hospital. Her mood has improved with the highest dose of steroids however her bowels continue to go backwards. We will now be moving right past the mid level drugs to the highest level. She will start Remicade infusions in a few weeks. This will kill her immune system making her susceptible to everything including several kinds of cancer. Even the common cold could be fatal. She has been stable for so long I have been having a hard time with this kick in the stomach!!!! To add to everything. her last blood draw showed problems with her liver. We re-drew labs this week and has a liver ultrasound. Still waiting to hear on these things. Please pray for my baby girl as we travel this horrible road!!

Lost in the time warp!

Well its 10-30, I've skipped a few days of updating. Mostly because it has been up and down with lots of wait and see!
We started Celia on pedialyte again @ 5ml/hr which after a day or so made the diarrhea, gagging,sweating and flushing come back. We stopped it of course but I really need know why this is happening because we have to get her back on her gtube feeds!!
Tpn has added some weight back but she is still about 10lbs off from good weight.
She continues to be very tired. I get her up to go for a cruise or two a day and just that wears her out!
Most of her labs are pretty good. Had a little hiccup with her PICC line not drawing for labs but we got it fixed!  Inflammation markers continue to be high, lipase level continues to drop, potassium is good, still waiting on several labs from today.
The GI team has dx's her preliminarily with inflammatory bowel disease-non specific. Inflammatory bowel disease is actually the head disease of 2 other diseases so the reason they say non specific is because her case doesn't fit what they typically see under either, but we do still have some tests pending so hopefully they will tell us more.
Started treatment this afternoon. Prednisone and sulfa to begin with. This will be a life long autoimmune disease. We should start to see a difference in 2-3 days, if not.........well we change things up and add things in apparently.
Upper GI @9am 10-31. Checking for motility and strictures.
Nana and I are stir crazy as hell, tired of hospital food, going broke and about to go looney.
Thank you everyone for your thoughts and prayers!
PS- please ignore any grammar issues or spelling errors, I'm just plain tired and typing this on my phone.

What day is this?

Yeah I'm so tired I don't know what day it is and we all know hospitals are in a time warp anyway so I am way out of touch!
10-26: We hung out with lots of docs,residents, interns, students and nurses today. They are so much fun! Celia got to take a ride down to IR to get a little gas and a PICC line. It went great! Thank God no more sticks for blood work and higher % TPN to help her little body recover. She has lost so much weight!
10-27: Things move alot slower on the weekends! Like molasses slow. Oh well what else do we have to do than watch Cars 2 5,000 times?? Oh ok actually I like that movie.
Celia's daddy drove out here and made it just in time for her to go to the OR! She was so excited.
She did great with the colonoscopy and endoscopy! They did find she has colitis of about 2/3 of her colon but not sure which kind until the biopsies are processed on Monday or Tuesday.  At that point they will decide treatment, form a plan while we let her gut rest and TPN put some weight back on her.
When we came back from the OR there was a surprise waiting for Celia! She hollered when she saw it and signed cat!

Trying to keep positive!

Update 10/25 Well the pedialyte last night resulted in the diarrhea returning at 6am after almost a full day of none. GI dc'd the pedialyte and ordered TPN. So far all tests have come back negative, no virus, no bad bacteria, no reason for this
to be happening. The attention has now been turned to this being something along the lines of IBD, chrones, or celiac's. Apparently any of those diseases can cause panceatitis and all her other recent problems. Tests are in the works for those diseases. Also waiting to get a colonoscopy and endoscope. Starting on TPN tonight, this could be problematic. She is on her second
I.V., we haven't been able to draw off of it for labs for 2 days now, it is only working for infusion, we have to use this peripheral for the TPN and pray it doesn't blow the vein. Every day the blood draws have taken at least 4 sticks. She is terribly bruised!! Still haven't gotten the results of today's labs because it took forever to get them drawn it was pretty late when they got sent in, so I don't know what her lipase level is today. My mom drove out here from Kansas yesterday and made it just in time for it to snow.
Nana has been the biggest help ever! Letting me leave the room to go get food, shower and nap, knowing that someone is right there taking care of my baby like no one but Nana can! She's been with us every step for almost 15 years and hasn't let the distance stop that! We are blessed! I also have been blessed with a great support system here thanks to Mark, Amber, Kathy, and Gage and all of our friends and family!
I gave Celia a bed bath while the aide gave her hair a shampoo cap, she liked it!

Hanging out at Children's hospital

Update 10/24,,been off feeds since yesterday, iv only. Her gut is cleared out now so it can rest. Lipase level is steadily dropping. Now we will start exploring what caused the severe gut irritation and pancreatitis. Started on pedialyte to see if she tolerates it over night @ 10ml/hr. So far so good. A little gagging. Poo is still being extensively tested to see if anything can be found that would cause this. Nothing yet. If nothing is found there they will do a colonoscopy and endoscope. I think a sono is still in the plans to look at her pancreas.

What a week!

Several weeks before Celia and I moved to CO, Nana and I had gone to Salina to my doctors appt. We always stop and eat at Red Lobster, its our treat :) well this time we came out to find the car window smashed in and our purses gone!
I won't go into how mad I was or how crazy I could have gone on whoever did this.
I missed my appt. Nana's car was pathetic, I was seething, Nana was sad and stressed.
The police were great, the detective was great,,they caught the guy(he had used my debit card several places and they got him on camera) so last Tue we got subpoenas to appear at the hearing in a week.
I decided to load everything up and go back to Kansas early to make it a little vacation. Nothing seemed to turn out right! The weather got cold and miserable, Celia got sick, then I got sick, then Papa got sick, then Nana got sick.
On Mon. I took Celia to the er in Hays and got her on antibiotics. I will just say now that I think we chose the wrong antibiotics!! Not only was her improvement slow but the poo started to flow flow flow. By Wed. she was only slightly perked up but I had only planned to stay until Wed so I HAD to get back to CO to get her meds. So armed with lots of chux we hit the road for the 7 hour drive home. We made it in good time with minimal leakage but once we got home, shit hit the fan.  The poo was an amazing color of green(ok so only my special needs mamas will appreciate that one, my mother will cringe) and there was blood in it. There was also blood coming from her gtube stoma and her trach when suctioned.
I had barely unloaded the car when all this happened so I loaded everything back up and drove Celia an hour+ back down to Denver to the er. Honestly I can't even remember what time we got there but we didn't make it out until the following day around noon I think.
After a host of tests the conclusion is......since she was already having diarrhea, the antibiotic made it worse, her bowels were moving so fast that she was "dumping" bile, and the irritation caused by this was causing the blood. We changed her antibiotic hoping this helps but as we all know antibiotics are famous for causing diarrhea so there are no guarantees.
Right now, she is still oozing from several orifices but I am hopeful that it improves in the next few days!!

Keep your fingers crossed!

Friday we started Celia on some meds for her behavior issues. I am praying this works for her. It will really make her life much better!
We had a great busy weekend! We went to IKEA for the first time! Wow was that overwhelming but fun!!
Celia's been a little under the weather last night and today. I am praying it is just a short tummy bug!