15 yo son recently diagnosed w Crohn's.
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.