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Hello everyone. My name is Katie. My son, Ian, is a former 29-weeker born premature due to severe maternal HELLP syndrome. He has had quite the adventurous journey. Through Ianer Beaner's highs and lows, we have learned more about prematurity, digestion, and food than we ever thought possible. My husband Tom, Ian, and I, live in Northern Virginia, just west of DC. I am a dental hygienist and work part time. Working in the healthcare field helped me understand Ian’s struggles much easier. I believe in making medical resources more available and easier to understand. This blog is both our story, and a gathering of resources. Please feel free to email me anytime with thoughts or questions. I love sharing our story ~~
Despite the antibiotic and diarrhea along with the recurrent ear infections and the thought that we will be meeting with an ENT next month for potential surgical ear tubes... Ian is thriving in LOTS of areas.
It is very easy to spend so much time dwelling on the negative that sometimes the positives go unnoticed. Ian is doing exceptionally well when it comes to many of his developmental skills. He made m laugh today while we were playing outside. It was in the mid 60s and above today in northern Virginia and Ian was driving his Lighting McQueen car around on the driveway.... and I mean HE was driving it!! All I did was turn the wheel as he was getting to the edge. He was pushing the button and putting his hands on the wheel. It was too cute!
He was running all over both inside and outside. He has also discovered that he can push the coffee table and ottoman away form the stairs and crawl up. We have removed all of our baby gates as our house is up for sale... or, it WAS up for sale. We currently have a contract pending and also have a contract offer on a new townhome! it is all very exciting.... and Ian is taking advantage of all the lacking babyproofing!!
He continues to thrive with his feeding and oral therapy. We are on hold right now with the specialist because until they begin removing and-or decreasing his tube feedings, we cannot do much more. Ian is eating several things now in small quantities. While they do not constitute a meal by any means, he is broadening his range. His new adventures include Cheerios, Lucky Charms and marshmallows, Cinnamon Toast Crunch, Goldfish, pieces of chocolate bar, crackers, and even a few wet and slippery things. As I was eating a sub the other day, a red onion sliver slipped out. Ian was sitting on my lap and immediately picked it up and began chomping on it! Ian’s feeding specialist said he would especially love foods that provided lots of oral feedback: sounds, taste, spice, texture. I suppose that is why he likes the pepperoni and onions.
The feeding specialist is keeping a close eye on his speech as it has a very minor delay. She does not seemed concerned at this time which is wonderful. Ian has mama and dada down very well. He has also started saying “nah” for no and “uh” for uh oh. We used to get a few sounds for duck, book, and ball, but he seemed uninterested at this time. His first word was “DUCK” back at the end of 2011.
He also still really enjoys his Baby Einstein videos and Sesame Street. Elmo is his favorite of course!!! His favorite Baby Einstein seems to be Baby Neptune now.... he LOVES the ducks! That’s mommy’s god boy!!!! (I love ducks by the way, lol) We watch a lot of SPROUT TV which is a PBS kids channel. He likes the music especially and still seems to be my RIGHT BRAIN kid. His free spirit and contagious happiness is extraordinary. On the flip side, he has become quite the whiner! And is also beginning to refuse nap times... that won’t be happening!!
All in all, he seems to be doing very well and surprises us with something everyday! We are excited about his progress and about the progress we seem to be making as a family. Hopefully, by the end of March or the first week in April, we will be living in our new homes with a large stressor put behind us. March and April bring another slew of appointments for Ian: consult with the ENT, consult with the metabolic diseases and genetics department at CHOP to rule out genetic problems and disorders, and also a followup with the surgical department at CHOP for his blood sugar/feeding/tube/vagus nerve control.
I apologize for the delay in getting all these new updates posted, but with the hospital admissions racking up here in the last 6 weeks, we have been enjoying every moment we can with Ian. Thanks again for all the support, prayers, and love!
Ian was diagnosed shortly after his return home with another ear infection. As usual, he was placed on an antibiotic. I knew this would be trouble, as Ian’s little body simply cannot tolerate antibiotics. It was only a matter of hours before the explosive diarrhea return, as worse as before. However, Ian seemed able to stay ahead of his hydration and blood sugar this time.
We continued to watch as things progressed and hoped we would not end up back in the hospital. After being on the drug for 4 days, we had to make a trip to the pediatrician. I mentioned my strong feeling toward c diff and she agreed it was a possibility.
The cause for the visit was the new addition of blood and mucus in the poop. Tom and I both knew that was not normal were concerned. The doctor informed us that the mucus and blood were from colitis. Because Ian has been having continual diarrhea for one month now, he had eroded away the lining in his colon. As serious as this sounds, it can get much worse. This needs to be addressed before a perforation is established. the c diff can wreck serious havoc on his colon.
The pediatrician recommended we immediately stop the antibiotic. She said his ear looked fine now. She also put us on poop collection committee! Many vials and diagnostic tubes came home with us and we started scoppin’ poopies!! HOORAY! We finally filled all the vials today and I will be taking it to the lab tomorrow. I am both hoping and fearful of some kind of diagnosis.
We also started Ian on a different probiotic. Ian had been taking the Cultruelle for Kids daily. We now are giving him Florastor for Kids. He has taken this before, but we had switched him because of the much much much higher cost. As this is an over-the-counter product, Medicaid and insurance offer no relief. After looking into other combinations on the market, Tom and I decided to buy in bulk to save some money. The Florastor for Kids has saccharomyces boulardii in it. This is a special yeast that has been proven to target diarrhea in the GI tract and can be helpful for c diff infections. Sometimes c diff infections can last months or years. Antibiotics can also be helpful, however, Ian has a new note in his chart that reads:
Child is NOT to have antibiotics unless absolutely necessary!
I am sure that c diff would qualify... however, they do not want to give him the antibiotics now to treat c diff until the toxin tests confirm it is there. Since removing Ian from the antibiotic and adding the Florastor for Kids, the diarrhea has subsided. We are down to about 3-4 diarrhea diapers a day instead of 8-12. When we were in the hospital and when he was on the antibiotics for the ear infection, we were anywhere from 15-30 in a day.
I am hoping that we are starting to make some progress. Tom and I continue to tackle each scenarios as it presents itself. After the GI trend, I can only imagine what will be next... I am afraid to even think it!
After Ian’s first visit to the hospital for the stomach virus, he came home and was doing well... for about 12 hours. We ended up back at the ER the following morning for the same diarrhea and dehydration. While he was not as hypoglycemic as the first few times, he was running low on blood sugar. We were admitted, again...
Once we arrived in our room, all of the nurses and doctors immediately recognized us. This was Ian’s third admission in 6 months on the floor. They ran another Clostridium difficile (c diff) test... or so we thought. A few days later we discovered the lab never ran the test. Apparently they have the ability to override physicians orders. Due to the new “sensitivity” of the toxin testing, only one test is run per 7 days! Well, thanks for telling me that!
For a few days, Ian was on isolation due to the unknown virus that might be circulating inside his little body. This time, I offered the information from our doctor at CHOP. They called him immediately. The surgeon removed Ian’s food right away. This time, he was going to be 36 hours without tube or oral feedings. The IV was going to provide enough sugars to string him along for a bit.
Ian missed his buggy rides around in the hospital and we eventually had the chance to take him to see the fountain and playroom. He is such a flirt! Even as a sick kid, he picks up all the nursing students and clinicians. Somehow, he managed to be full of smiles and giggles. Sadly, I feel that he has started to feel at home in the hospital at times.
Once Ian has been without food for a bit, all he wanted to do was eat! Imagine that, my child, eating by mouth!! It was actually a struggle to keep him satisfied. once the surgeon at CHOP began introducing feedings again, we offered food orally. Ian ate a couple hundred Cheerios while we were admitted. He even ate a chocolate chip cookie and some yogurt. I wish this would have stayed... while he is still eating orally, it has scaled back considerably from the hospital.
The final diagnosis again was viral gastroenteritis. The doctors believe he was simply discharged too early and had not been given the time to recuperate. Being off the feedings for a longer period of time allowed him to stabilize more. We were there for one week this time. It was a long week, and while things weren’t perfect, we came home.
Ian was glad to be home and back in his own bed. I was once again amazed at how resilient and brave he can be. Watching your child be poked and prodded and stuck over and over again, it begins to both become normal, and become horribly depressing.... neither of which is good.
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