If keywords could sum up our miserable month of April, this would be our list. How could one little guy deal with all of these things in a single month? It boggles the mind. My only answer is he's extraordinary. The last four are still ahead of us starting with the barium enema tomorrow morning.
How does one frightened/worried/anxious/exhausted mom keep going despite karma throwing a big steaming pile of sh*t on her beloved son? I'm still trying to figure that one out.
The condensed version of the April saga is:
Week 1 - we get results back from the endoscopy and gut culture. Surprisingly, all results are negative for bacterial overgrowth and allergic inflammation. The increased eosinophilic activity and mild blunting of the villi seen last September is no loner present - a positive sign finally! Sadly, the positive news ends there. Joshua attended GI clinic on Friday, had a lab draw from his line by a CHOA tech, then came down with a fever which turned out to be a line infection the next day.
Week 2 - we spent all week in the hospital as Joshua experienced his first febrile seizure and first stay in the PICU. He battled back and fought off the line infection before it became systemic. Unfortunately, a blood clot at the tip of the line was found during an ultrasound so he had to start being treated with twice daily Lovenox injections. Joshua went through a gastric emptying study to try and pinpoint the source of his chronic belly pain. This is the first step in motility testing.
Week 3 - this week was a little more laid back except I was learning the routine with adding three times a day IV antibiotics and twice daily Lovenox injections to all of the other care he requires. We managed to fit in a vision screening and speech therapy and I was even able to make it to work two days!
Week 4 - here is where the train really starts going off the track. Joshua beings violently vomiting on Monday two hours after I gave him a probiotic. At first I thought it as the medicine, but then he continued retching and dry heaving long after it was out of his system and diarrhea set in the next day. On Tuesday, Joshua and I went to the Emory Developmental Progress Clinic and our GI clinic to have labs drawn. At the DPC, Joshua was referred to the Marcus Autism Center to have an autism evaluation. This was not a surprise to me, although it was most unwelcome, because our speech and occupational therapists have both brought up concerns about a sensory processing disorder or autism. I have not been focused on this partly because I haven't had time to and partly because I refuse to process the information. To think we could get our sweet baby through all of these medical obstacles and his life could still be limited by another type of condition is crushing and I just can't accept it yet. But, that's on the backburner for now. At the GI clinic, our doctor and nurse practitioner examined Joshua and thought it likely he had a stomach virus unrelated to the probiotic. After days of unrelenting diarrhea, Joshua and I went back to CHOA last Friday for the upper GI with small bowel follow through X-ray study we rescheduled so we could be discharged Week 2. The study revealed a sinister situation - a loop of dilated bowel upstream of the point his intestines were surgically reconnected. This is devastating news since it will require an exploratory laparotomy which will very likely result in another resection so Joshua will lose even more bowel if a stricture or narrowing is found. Our surgeon is planning on speaking with us tomorrow to formulate a course of action after she has time to review the results of the barium enema. I expect Joshua will be scheduled for surgery within the next few weeks.
I have known since the radiologist showed me the dilated section of bowel on Friday that surgery was imminent, but it still hit me hard when I spoke to our GI doc yesterday afternoon and he said the words I never wanted to hear again - Joshua needs surgical intervention. The tears finally came today when the nurse called to schedule the barium enema tomorrow. This is just the beginning of the painful, uncomfortable things Joshua will be forced to endure over the next weeks. But, let's not forget he endures pain every single day. This is just the latest in a lifetime of injustices for the little fellow. I have no idea what to expect in terms of recovery since we don't know what the surgeon will encounter when she gets in there. I anticipate we will be talking about weeks of recovery - not days. You might recall he contracted a MRSA wound infection after his last resection that almost killed him. The infection lingered for over a month and it was hell. Surely his luck will change this time around, right? One would think so, but it hasn't happened yet.
A slightly positive aspect of this terrible situation is the surgeon can perform a STEP procedure, which is a surgical lengthening of the small bowel, while she is already in there. This is a surgery I thought was only available in places like Boston and Pittsburgh, but now I understand is an option for us at CHOA. This is a difficult and invasive surgery, however, it may give him a chance to recover the length of bowel he loses from a potential resection so the net result could be no functional loss of bowel.
I hope to get a better idea tomorrow of what is in store for us during the month of May. I have amazingly low expectations.
Do not despair on the autism diagnosis. My son has what was formerly called Asperger's syndrome ( high functioning autism). He got his AS degree( 3.79 GPA) and is a licensed massage therapist. He is an exceptional young man, just ask his great-aunt Ann Folden! 1 in 68 children now are diagnosed with autism. If you need any info or just want to talk, email me. Not only have I raised an autistic child as a single parent, but I am an experienced pediatric RN as well as a relative! Glenna Folden Lawrimore BSN, RN
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