We also invested in a HEPA air purifier. When I say invest, I mean invest! The thing even came with a protection plan! After researching different brands and quality levels. The highest allergen coverage, for a medium room like his bedroom, that was considered quiet, and came with HEPA filtration was almost $250. This purifier is going to be traveling with us quite a bit for overnight visits that are more than a single night. I did notice that it made the room smell funny. Tom and I thought that was strange. Then it occurred to me that “Ian’s air” didn’t smell, the rest of the air smelled. Ian’s room smells very fresh and crispy-clean. Apparently, it’s our air that’s smelly! We are looking into a home HEPA filtration system, but........ one step at a time.
Somehow or another, despite the recipe changes to help decrease Ian’s bowel troubles, we ended up in the opposite corner. We had three days of horrible diarrhea, yellow diarrhea. Now this may sound like TMI to most people, but coming from a GI standpoint, where half or more of your child’s life centers around his gut, yellow diarrhea is a big deal. The doctors at CHOP reassured us that it is most likely attributed to the dietary change, in the “switch-over.” After giving it a few days, it began to subside and we seem to be on the mend from that.
During this time, Ian ended up doing 24 hours of Pedialyte as well. Between the 24 hours of no food, and the 3 days of endless diarrhea, Ian managed to lose 5 ounces. This is no surprise, but does undo all the progress in weight since the surgery. Another trouble to follow was blood glucose. When diarrhea is significant, intestines do not absorb nutrients as they should... (partially because food is moving too quickly through the intestines and food needs time there to be “processed” properly.) Since blood glucose levels were not easily maintained, hypoglycemia began to rear it’s ugly head again.
Ian’s sugars were dropping into the 40s for a few days. Now 40 is not typically dangerous to the brain in terms of seizures or cell death, but an ongoing level of 40 isn’t going to help you any either. Ian experiences a lot of irritability, lethargy, pale color, and “glazed” looks. Thanks to Similac’s Glucose 10% water, Ian was brought up quickly into the glucose amongst the healthy. Even today we are still seeing glucose levels in the 50s. We have been reassured again that levels in the 50s are not troublesome until their are symptoms. This morning, Ian was running and laughing at 53. Sometimes he amazes me. I think I throw the towel in somewhere are 65 ;)
Last night we dove into a new experience..... wet, violent, gasping, wheezing, choking coughing fits. These are pretty scary. Ian had his first one at midnight. The coughing fit lasted about 3 minutes so. During that time, Ian turned all sorts of colors and we could hear the “stuff” moving around in his esophagus and upper airways. What that “stuff” was, we didn’t know yet. We did give Ian a few puffs of his Albuterol to help him. It seemed to allow for easier breathing, but of course did nothing for the root of the problem.
After he settled down, he slept very well until his overnight meal was finished. As we unhooked him from his meal, he awoke and had another coughing fit. Once again, the coughing was wet and thick, and seemed to have Ian choking and gasping between coughs for breath. There were no breaks in between coughs, gasps, and wheezes for either episode. It was continual. Again, the Albuterol gave him some relief.
As we had previously been concerned about viral symptoms prior to our CHOP visit last Thursday, this got the gears in my head turning. (Hey, you knew it would..... would you expect anything else from me?) While I didn’t want to diagnose anything, I wanted to be prepared for illnesses and symptoms before the appointment at the pediatrician at 10:30. I have found that it is almost always imperative that we do our research before going to hear what any medical professional has to say.... so we can listen, counter, and ask appropriately. Ian’s symptoms tended to fall into the categories of Whooping Cough and Pneumonia. Thankfully, Ian has been vaccinated for both of these (unless diagnosed as viral pneumonia).
After an examination showing perfectly clear lungs (go figure) and no ear, nose, or throat troubles, we began to make connections with Ian’s other troubles. And around and around we go again. The conclusion was that these sounded pretty much like Ian’s regular episodes, only with actual “stuff” in his throat..... stuff that he was actually getting up into the esophagus. Although unable, or unwilling, to vomit or spit out the “stuff,” it was still caught somewhere between the stomach and the mouth. This caused Ian to struggle.
As the daytime came, the coughing fits stopped and he continued to run around like nothing ever happened. He continued to laugh and play while not sounding congested at all. The congestion only seems to come during sleep...... nap time and overnight. We were glad Ian didn’t have some type of serious viral or bacterial infection. It was nice to pull the “less dangerous” card for once.
We will looking into Rx Singulair for Ian to help with allergies, as well as breathing ease during the coughing fits. Hopefully, that will help us make some more progress. Working with allergies for a kid who can’t vomit up junk or blow his nose is incredibly frustrating. I can hear him moving it around, trying, but failing to get it where he needs it to go.
CHOP Reflux Clinic Website
I spoke with the web and marketing chair at CHOP yesterday about Ian. The reflux clinic Dr. Blinman and Robin have created will now have it’s own webpage. This will give families a chance to learn about their philosophies. We are hoping that it will make it easier for families to find advice and seek care. This is going to be a huge step in getting the word out about what they do and how they can help children who usually do not respond to medical therapy for the treatment of GERD and associated diseases.
They have asked to feature Ian as a story on their site. I interviewed with the girl over the phone for about 90 minutes. it’s amazing how much you have to say about a story when you keep talking. The site aims to be up and running by the end of the year. Tom and I were excited to contribute to such a great cause.
We also had a chance to celebrate with family this weekend. Saturday was a cousin’s 2nd birthday party with lots of kids and fun. Sunday was a family reunion picnic with an awesome playground and nice weather to play. Ian had a lot of time outside this past weekend, which I am sure didn’t do much for the allergies. Once the medicine is in routine, we are trying to fee optimistic that it will make a big difference.