Since August Joshua has endured:
- four terrible ER visits that all ended in hospital admissions
- a life threatening central line and systemic blood infection
- six weeks
of debilitating diarrhea
- two invasive surgeries
- one endoscopy with multiple biopsies
- a bloody diarrhea event caused by food allergies
- multiple difficult IV sticks
- one horrendous catheterization
- three weeks of acidosis
- one CVL break
- and other various injustices including a stretch of many weeks he was hooked up to IV fluids for 16-24 hours a day
During that same time Joshua has also:
- learned how to crawl as fast as
lightning
- learned how to pull up, cruise, and is now taking 10+ steps on his own
- had his first hair cut
- (kind of) enjoyed his first
real baths
- took his first swims in the lake
- cut his first tooth and now has a whole mouthful
- started devouring finger foods
- discovered playgrounds
- began destroying everything
in the house within reach
- went on his first hike in the mountains
- enjoyed his extended family at Christmas for the first time
- and brought a million moments of joy and laughter to his adoring Mom & Dad
I am always asked "How is Joshua?". Such a simple question, but with not so simple of an answer. It is incredibly difficult for me to express how Joshua is doing on any given day. On many levels he is doing fantastic and is one of the happiest, sweetest children I know. On other levels he is struggling mightily and so am I. I also know most people don't really want to know the nitty gritty about our day to day trials, they just want to hear Joshua is doing better and isn't in the hospital so they can go about their day without having to spend any more time thinking about the Foldens' sick kid. Who really wants to think about an ill child? It's a downer. So I've tried to come up with a pat answer that sort of expresses how difficult things are, but with a positive twist to make people feel better - needless to say, I'm still working on it.
As usual, I have many more questions than answers about how the recent setbacks will affect Joshua's long term progress. I simply don't have the information most people want to know.
How much longer will he be on IV fluids? Will he have long term effects as an adult? Will he outgrow his food allergies?
These are questions our doctor can't answer for me so I cannot begin to answer them for others.
How much longer will he be on IV fluids? Will he have long term effects as an adult? Will he outgrow his food allergies?
These are questions our doctor can't answer for me so I cannot begin to answer them for others.
What has been determined through some frightening trial and error in August/September is that Joshua's body is nowhere near ready to digest and absorb the amount of food he requires to thrive. The only way to wean him off the IV fluids is for his body to absorb more formula and food so we can lower the amount of calories he gets overnight from his fluids. After working up to 4 oz bottles before the line infection in August, we have been stuck between 1.5 and 2.5 oz bottles ever since. Any time we increase the amount, he gets diarrhea and we have to cut back again. It is a maddening process that is heavily complicated by bacterial overgrowth and inflammation caused by food allergies. We never know if it is the increased feeds or one of these other factors or a combination that is contributing to the diarrhea. Either way, the only thing to do is cut back on feeds. Joshua absolutely loves to eat, which is rather unique amongst his short bowel syndrome colleagues, so it is especially disheartening to take away something he loves to do. This also makes him rather irritable, as I'm sure you can imagine (no one would want to be near me out of fear for their lives if I wasn't allowed to eat).
Several factors have led Joshua's GI team to believe he is suffering from inflammation caused by a so far unidentified source. Starting with an endoscopy in September that showed increased eosinophilic activity and mild blunting of the intestinal villi, a bloody diarrhea incident in October attributed to a wheat intolerance after he had a few Cheerios, and most recently a markedly increased fecal calprotectin level which is a marker of inflammation. There are two likely culprits of the inflammatory response - bacterial overgrowth and/or a sustained allergic reaction. Joshua was diagnosed with bacterial overgrowth in the spring (very common for people missing their ileocecal valves) after responding well to a maintenance antibiotic regimen. We have been tweaking his regimen ever since in an unending effort to stay ahead of the overgrowth and antibiotic resistance. It is a difficult balance to maintain with less than perfect diagnostic tests to assist with treatment choices. Joshua has also shown tendencies for food allergies having already been diagnosed with a dairy allergy via a colonoscopy and now a wheat intolerance. There are likely other food items that cause him problems that we are not aware of yet. He thankfully did have negative blood test results for the major anaphylactic type allergies for nuts, shellfish, citrus, and soy.
The extremely frustrating part of this has been trying to determine what is causing the inflammation. I have slowly learned that the hospital we go to is not capable of performing (or not willing to in one case) some of the current diagnostic tests available for unambiguous diagnosis of bacterial overgrowth including breath tests and gut cultures collected during an endoscopy. Gut cultures are able to tell you what strain of bacteria is overgrowing in the small bowel so you are able to wisely choose the best antibiotic to use. After months of inquiring, I finally found out the real story at our hospital is that they used to have a protocol for gut cultures years ago, but it's a difficult culture reading procedure, and no one in the laboratory knows how to do it currently. What?!? This is the reason my son is going through months of discomfort and antibiotic trial and error? And the reason why we weren't able to positively identify the source of inflammation during the last endoscopy and now he needs another invasive procedure requiring anesthesia? Unacceptable.
I was extremely grateful to have found a wonderfully supportive and extremely knowledgeable group on Facebook for family members of short gut kids around a year ago. Through this group, I now understand that our hospital is not even on the list of the best pediatric GI hospitals in the country. Although it is well known for heart transplants and cancer treatment, GI conditions are not their specialty, especially not short gut. I now know that Joshua would be receiving top notch treatment if I were to bring him to hospitals in Pittsburgh, Boston, Cincinnati, or Minneapolis.
We are now considering the benefits of traveling with Joshua (and all that entails) to see the best short gut doctors in the country since I am unimpressed with our current level of progress and the unknown path ahead. I believe we may have reached our current teams maximum capabilities and Joshua needs and deserves more. This will be an involved process that would require coordination with our current team. Because routine care for Joshua's line, etc. would still take place at our home hospital, care must be taken not to burn bridges with our current team. This can be challenging, especially during admissions when my anxiety is at its highest and I am constantly reminding myself not to bite peoples heads off. Sometimes it works and sometimes it doesn't. My apologies to the staff that have suffered through my heated comments - it all comes from a place of desperation for my son.
The strange thing is now the hospital stays, doctors visits, and everything else that goes along with treating Joshua's condition seem like my "real life" and the weeks that I actually keep a normal schedule and go to work two days a week seem like my "other world". I spend such little time in my other world that it is hard to know what to do when I am able to be there. I had the amazing fortune of meeting up with three other local moms recently that I found through my Facebook support group. They all have short gut kids that are around 4 years old. It gives me hope to see that even though their children's condition still occupies a large portion of their life, there are fewer hospital admissions and more time in between doctors visits the older the kids get. Knowing I have this unbelievable group of women behind me brings me great comfort, they understand firsthand everything we are going through and that is invaluable to me.
I will do my best not to let as much time pass between posts. Now that you made it through this long diatribe, enjoy a few cute photos! B&W's courtesy of Anne Manning.
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