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15 yo son recently diagnosed w Crohn's.

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June 17 we are headed home

June 15 IR surgery to remove fluids from his abdomen. 

June 14 still in hospital from Ileostomy reversal.  Called a patient advocate, requested move to GI floor, more iv fluids, and for tests to be run.  Ultrasound showed fluids (abscesses and hematomas) built up in the abdomen. 

June 7 returned to Children's in Little Rock for another surgery.  Once again having complications and we are still here as of Saturday June12.  

ER visit #9 April 21.  We were sent back to Little Rock for further testing. 5th hospital stay.  Extreme pain. In the process of testing and searching for answers. 

ER visit #8 April 5 for pain symptoms. Sent home after pain subsided. 

Stopped medications April 7.

Released March 17. 

March 16- (my birthday today) GI DR just came in and he's working up our release for TOMORROW!!!!!! Carter has made a drastic change in health over this last week and they are letting him go home. The PICC line is coming off and they are inputting take home medications for the pharmacy.  Carter and I should be heading home tomorrow.  Thank you for your prayers, all the cards, and the goodies sent!!! (48 days here tomorrow!) 

March 8 - We just got moved back to 4th floor.  Surgery is stepping back and letting GI take the lead.  Today is 39 days here.  The goals now are to get him to where he can actually eat and hold food down.  This will definitely be a slow process because he's still getting sick and not tolerating liquids. Surgery will still be checking on us because they are still dealing with abscess drains and the wound vac.

March 3- anesthesia to deep clean out wound and resealed with wound vac. Replace abscess drain with suction drain.  

Update: March 2, 33 days in the hospital this trip.  CT scan scheduled for tomorrow (Wednesday) to look for more abscesses that have formed. Today wasn't as great as the past few days were.  Fever, nausea, and pain are all back. Drains are still pulling out lots of liquid from the previous abscesses. 

Thursday Feb 25 -4th surgery in 17 days.  

update Feb 22 we are still here at Children's. We've had a lot happen. His medications have been changed around both per dr order and per my order. Now going home depends on him healing more and getting his eating back to normal. Still fighting infections. 

update Sunday February 14- progress has been up and down.  He has good moments and bad moments. Looks like they are waiting a week for antibiotics to be done to see if there are any other complications. 

Update Thursday Feb 11 he had a second emergency surgery. The surgery went well. 

Monday Feb 8, he is going in for surgery.

Today's current update is that they've moved surgery to Monday or Tuesday. 

It looks like 2 more weeks here at Children's in Little Rock. They tried foods yesterday and the pain came back just after bedtime. They want to quickly taper the steroids and schedule surgery for later in the week. Not doing the Humira now.  Looks like they think we will be here 2 more weeks. We were just told we might be going home Monday and all that shifted.

update - Feb 5 Surgeons visited us at 630am.  Thoughts are to give Humira on Saturday then send him home Monday. Continue to taper off steroids.  In two weeks come back and do surgery.  (Last week of February). Twelve GI drs got together yesterday (Thursday) and discussed his situation and they came to the conclusion that surgery was needed. 

update - Feb 4, the surgical team and drs have decided to put Carter on a low residue diet to see how his body reacts to food.  The CT scan last night showed improvement but there is still swelling which could be scarring or just inflammation. They suggested a liquid only (boost drinks) diet for 8-12 weeks but Carter cannot stay away from food that long so we went with the low residue diet. They said depending on how he reacts to foods the surgery is on hold for now but still hanging out there.  Looks like we may spend the weekend here because they want him on it several days before they send us home if they send us home. 

Update - Sunday Jan 31 we are still in Children's in Little Rock (arrived Friday).  Tonight they are hooking up nutrition to run through his IV and tomorrow they are starting a PICC line.

Update- Here we are on Friday Jan 29 and my son has been readmitted to the hospital.  He was doing well this week after we were released on Monday but Thursday the pain started again.  We tried everything we are supposed to but it didn't work. Friday 345 am he woke up feeling nauseous and in a lot of  a pain so we went to the ER.  After an x-ray and a cat scan he was ambulanced to Children's in Little Rock. 

Update Jan 24.  We are now on our 6th trip to the ER since Oct 18 and our third stay in the hospital since Dec 10. We are currently in Little Rock at Children's. He has been diagnosed with Crohn's disease and is taking the Humira shot, steroids, prilosec, laxatives, vitamins, probiotics, and when needed pain meds and Zofran for nausea. He has finished and or changed several medications over the month also.  We are very lucky to be on ARkids and all his medical needs and medications are covered. Blessed is maybe a better term. Thank you Jesus. 
We made it through Dec and most of Jan (thank you for the previous help).  Any help would be appreciated.  If you're uncomfortable giving through gofundme, I have paypal [email redacted] and the cash app ($kimconrad).  

Update Jan 22- check up with GI dr.  Received information on MRI testing and general health check. 

Update Jan 21- vision has been blurry so we visited his eye Dr and a new prescription was given.  Eyes are actually pretty healthy but he has an allergic reaction rash all over him and even bumps on his eye lids from the high doses of prednisone he's taking. 
 
Update Jan 20- MRI appt at hospital from 8 am to 12pm. 

Update Jan 6- Primary care doctor check up from hospital stay and to update medication records.

Update Dec 30- After several days of care we are being released today 

Update Dec 27- back at ER with extreme pain and vomiting.  They are admitting him to Children's in Springdale. They are providing fluids, pain meds, steroids, and watching him. Had to reschedule MRI for a later date. 

Update Dec 26 - here we are at the ER again. They ran tests.  They sent us home. Gave Zofran prescription for nausea

Update Dec 17- Primary care doctor check up from hospital stay and to update medication records.

Update Dec 15- We are able to return home today.

Update Monday afternoon Dec 14: So they finished the colonoscopy and found damage to his small intestines as expected. It was swollen and slightly closed but things are passable for now. They took biopsies for further testing and will have results sometime this week. Together with research, speaking to several GI drs, and results from the tests run we decided to start him on a steroid he will take daily for several months and a shot he will give himself every two weeks. These should help with inflammation and to treat the issue. After we get the biopsy results adjustments will be made if necessary. Starting immediate treatment helps him heal faster and hopefully prevents more flare ups like on Wednesday/Thursday.  Also starting treatment here allows doctors to be present and any questions we have can be answered quickly.  He has recovered quickly from surgery and is awake, hungry, and back to himself.  He is feeling so much better at the moment and for that I am grateful to all the nurses and doctors that have been so incredible to us while we are here. Thank you for your prayers for answers and for him. They are keeping him overnight to watch him. He has been diagnosed with Crohn's disease. This is not curable but it is manageable with diet and medications. 
  
Dec 10 -This was our third trip to the ER in two months.  Luckily I decided to take my son to children's in Springdale instead of a regular ER. They were so kind and ran so many tests.  After a few results and talking with Little Rock specialists they sent us in an ambulance to Children's in Little Rock.  They are still running tests and waiting for results but all of that takes time.  I have a full time job other than being a mom and housewife so being here is causing me to lose income.  I need help covering my part of our home expenses while I'm missing work and some money for the little extras while we are here.  Yes they provide free regular meals and I am so grateful for those.  On a bad note there are some things I just will not eat.  (Those picky eaters like me will understand.) (Like egg salad sandwiches )  I don't need a lot I just want to be able to not stress about trying to keep things paid or having food for myself while we are searching for answers. Any help is greatly appreciated.  Thank you so much.

November 4- Primary care doctor check up from ER visit. Prescribed steroids. Scheduled MRI. 

November 3- ER visit. Blood work. Muscle relaxer prescription given. (Didn't even fill because it did nothing)

October 20- Primary care doctor check up from ER visit.

October 18- ER visit. Cat scan. Blood work. 2 antibiotic prescriptions given. Thought colitis..

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  • Anonymous
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    • 3 yrs
  • Anonymous
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Organizer

Kim Weaver
Organizer
Prairie Grove, AR

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