“On August 31st, 2016 G9 month old Gemma woke around midnight crying inconsolably with a slight fever. After only an hour her fever had shot to over 103 degrees and she had what is called a febrile seizure. She was rushed to the ER where she was kept for several hours, only to be released by the ER doctor stating that she must just have a virus and that we should go to our regular pediatrician. Upon our pediatrician seeing Gemma she was immediately reserved a room at the main pediatric hospital, where she spent the next 2 days with no diagnosis.
After a great deal of pressure from us as the parents the doctors grudgingly administered an ultrasound and learned that Gemma’s appendix had burst. Once this was discovered everything started to happen quickly: Gemma was life lighted from Bend, OR to Portland, OR for emergency surgery. The surgeon said to us that Gemma had rivers of puss, and that it was likely that she would need additional surgeries to further clean out her organs from the delayed diagnosis. After a total of 14 days in the hospital Gemma was deemed healthy enough to return home! We were thrilled! We felt as if we were done. She’d made it through, and now the hard part was over. Or so we thought.
The on slot of antibiotics administered to her destory Gemmas gut healt. She was diagnosed with PTSD, was set back on her physical development by several months, and there was still the unknown cause for the appendicitis and continued poor gut health. In mid-November, after more pressure on the doctors by us, they agreed to administer a colonoscopy to see why Gemma’s bowels were not functioning. It was discovered at that time that Gemma’s entire large intestine was covered in small to medium nodules and a biopsy was taken. The doctor’s diagnosis was inconclusive, yet Gemma continued to experience terrible pain in the bowels and took four months to have a somewhat normal stool.
Gemma has had 2-3 doctors’ visits each week since her release from the hospital in mid-September of 2016. She has to see an occupational therapist for the PTSD, a physical therapist to her get her back up to speed with walking and motor skills, and there have been many, many continued tests to determine the reason her bowels are not healing.”
On July 6th Gemma started to show the same symptoms that she did 10 months ago. Mary rushed Gemma to the children's hospital ER and waited 12 hours before finally being admitted to the hospital. Through observations, multiple tests, and a CT scan the doctors began to take action. The CT scan showed fluid in her abdomen along with a possible bowel obstruction. This lead them to emergency exploratory surgery at 1am. This is when they discovered a part of her small intestine had wrapped itself around an adhesion band from her surgery 10 months ago.
She had purple and black bowel. She has 150cm of good intestines and they had to remove 60cm of dead intestines. There was still 10cm that they are trying to save because it's the part that is responsible for absorbing vitamins near where it connects to the colon.
She needed a blood transfusion so she is currently getting that. They left the breathing tube in because she was going to have a second surgery to determine if the 10cm is able to be saved or if they need to remove that as well.
On July 8th Gemma underwent a second surgery. The last 10cm was unfortunately not able to be saved and had to be removed. She did have a tiny bit by the valve that was able to be preserved and save the valve, they reattached the remaining intestines. She continued to have the breathing tube for a few more days and a PICC line. July 12th they removed her breathing and NG tube. It was very traumatic for everyone involved.
She was cut of of her sedation meds and has been vomiting since. They cut her off of the medication and didn't start her with enough and now it might be too much. Such a balancing act going on over here and a lot of clothes changes due to the vomiting. She's going to be seeing a speech and feeding therapist because she's lost some control in swallowing. She'll be in the PICU until they can get her meds figured out. She' has been more verbal and is in pain so we are hoping that isn't a sign of a 3rd surgery. Only time will tell.
The concern now is how the intestine heals. The staples are there but it's up to her body to create the scar tissue to reattached the intestines. There is a small chance it could over heal and create another obstruction or under heal and have holes where fluid seeps out. A low percentage but something they will be watching for.
From the medical cost to time Adam as needed to take off of work to care for his family any and all donations are greatly appreciated!
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- Vivien Lau
- jane kopti-põder
- Emi and Penny
- Kathy Lambert
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