Yesterday seemed like a regular day, well, regular in our world... However, Ian’s vomiting and diarrhea had other plans. Over the last three months, Ian’s bloody and mucus filled diarrhea has remained steady and slowly crept up to an unacceptable rate. Not that I am advocating bloody diarrhea for any period of time, but enough was enough. The cessation of vomiting is a thing of the past. Slowly, since the gastroenteritis, Ian has been vomiting again. The last 10-14 days it has been pretty much everyday.
Topics to be covered: Vomiting/Upper GI, Diarrhea/Lower GI, Metabolism, Endocrine/Hypoglycemia, Feeding/Swallowing
Let’s begin with the upper GI and vomiting problem. In January, as mentioned before, during our nosebleed admission, Ian’s herniated Nissen fundoplication was found and confirmed again. Shortly after, the occasional vomit occurred. While we didn’t like this, it was NOTHING compared to before the Nissen was done, so we didn’t think so badly of it. Ian seemed to struggle to get it through the Nissen and right before vomiting, lots of air would release in a burp. It would fall from his mouth. Since the Nissen slowed it down, projectile was far from present. Since Ian continues to gain weight and avoid hypoglycemia and dehydration, no biggie was made.
Now that it is occurring everyday, it’s a biggie! We included this in our emergency visit with the ped yesterday afternoon. I had spoken with CHOP GI over the phone and they advised an ER trip, but wanted the ped to confirm first. After assessing all the issues, the ER trip was confirmed. The ER at CHOP was notified that we were “en route” and they were expecting us..... from 3 hours away.
playing at the ped
rolling in to CHOP last night
In addition to the upper GI vomiting, the diarrhea was a concern. The bleeding didn’t help. Three months of this is not normal. No one seems to be able to attribute it to anything. Bacterial and viral tests are all negative.
After a positive fecal occult blood test, duh! ... the Er trip was becoming more definitive. The ped waited to speak with GI here at CHOP and she decided it would be best for us to come in and be admitted so that quicker testing could be done.
Now, the admission
view from our floor
Once we got to our room last night, things started rolling a little more. Testing was done down in the ER, but we have been admitted to the GI floor. These guys know their stuff! They even have a formula room that makes/ mixes all his food. Other hospitals watch us like we have an alien child as we concoct his food each night. Since CHOP seems to be on top of GI treatments and such, they take care of it.... amazing! I have no been spoiled.
Overnight, Ian was able to stay on regular feedings... today as well. Of course, he didn’t poop until lunchtime, and it was very small and not enough for a sample. they are waiting on a second one to complete the sample. Another (7th) c.diff toxin test will be done as well as another stool culture. At least they have been able to SEE what we are talking about. Isn’t it the truth then when you are in the presence of answers, the problem never occurs??? We have been explaining to doctors and nurse, and hopefully well received, concerning Ian’s demeanor and spirit. He does not look like a SICK CHILD. Doctors weigh very heavily on LOOKS for sick kids... not sure I agree with that! Waltzing into the ER at 11pm with a smiling child doesn’t bode well for your case.
Until the c.diff test and stool cultures return negative, and they can rule out bacterial infection, AGAIN!!!!, Ian cannot leave the room! He is on “room arrest” for another 48 hours at least... with the exception of procedures. Thankfully, CHOP has exceptional accommodations and we have been able to avoid cabin fever over the last 24 hours.
GI did come visit this morning with rounds and the first test to complete is an Upper GI series. This will be Ian’s 7th Upper GI. The purpose of this study will be to evaluate the Nissen. As it is herniated, there is a concern it has advanced or opened completely, or torn open. This could be where the bleeding is coming from that is present in the diarrhea. Also, with a loose Nissen, Ian would be able to vomit MUCH MORE easily from the uncontrolled severe GERD. The radiology department shuts down on weekends, go figure, so this will be completed on Monday.
Depending on what they find, it might be ok, might need surgery, might elude to a lower GI issue, who knows? They will wait and decide on Endoscopies and Colonoscopies at that point. The doctors are prioritizing things and the bleeding and vomiting come first since hydration is not an issue with diarrhea right now.
The question I have with this Niseen and bleeding is color. Bleeding from the upper GI tract is usually darker red, brown, black, and/or tarry in nature. Bright red blood, such as the flecks and spots Ian has, is typical of lower GI tract bleeding. Ian’s esophagus where the Nissen is would certainly be upper GI tract.
Many of Ian’s genetics and metabolism tests from Wednesday have come back negative. Not all of the results are in quite yet.
Endocrinology has been nice enough to come and consult with us while we are here. The reason for their visit is analysis for risk of hyperinsulinism and evaluation of the presence of post-prandial hypoglycemia/ reactive hypoglycemia. This is known as Late Dumping Syndrome, a side effect of gastric surgeries. Ian has already been diagnosed with this..... however, the surgeon that runs the clinic we visit here based it totally on clinical history and no diagnostic confirmation was worked up. Honestly, I don’t care... the treatment worked wonders (new food recipe and regimen) and the retching stopped. I have much respect for this man and I trust him.
Endocrine has other emotions. They don’t understand how we can “know” he has late dumping syndrome if it was never “seen” on a test. To some degree, I understand where they are coming form. Tomorrow we will be doing a glucose test to confirm hypoglycemia after eating. It is called an Oral Glucose Tolerance Test. This is the same test completed during pregnancy.
If Ian’s blood sugars are erratic and fit a specific pattern, the PPH (Post-prandial Hypoglycemia) diagnosis will be made. Regardless of this result, they will also be performing a 12-18 hours fasting test for Ian. At this point in time, they will begin taking blood sugars after he has been fasting and see if he is buffering his own blood sugar, if large amounts of insulin are being secreted, and/or if hypoglycemia is present.
This site also speaks of the Oral Glucose Tolerance Test (OGTT)
Honestly, this test was done at our request. The endocrinology department did not seem overly concerned about hyperinsulinism because he most likely would have started having major troubles long ago. However, they were extremely concerned that no formal blood sugar testing has been completed in the fast when a diagnosis was made, and that we were never requested to take blood sugars at home. We will see what becomes of these tests. If the fasting blood glucose test comes back negative, or normal, then there is no chance of hyperinsulinism.
Ian’s blood sugars were tested today with a regular feeding routine. He had his normal 4 ounce meal at 12 noon. Thirty minutes after he finished, and every 30 minutes for 3 hours, they took blood sugars. Everything was normal and the sugar never dropped below 88 and didn’t rise about 106. If the diagnosis for hypoglycemia IS in fact late dumping syndrome, the feeding routine he is on now is working..... hence hypoglycemia is not causing the vomiting. It gets a little confusing sometimes! ok, a lot of times!!
I am thankful for my medical background and my ability to understand and digest most medical terminology and knowledge. I truly believe that my ability to understand and my desire for research, combined with my stubbornness for answers is a big strength. It keeps me focused and “in the know.”
I don’t know how many times I have corrected or mentioned things to medical professionals that seem common sense to me that slip by them. They are wonderful people and do so much to help Ian and our family, but sometimes I wonder... Fortunately, CHOP has not been an issue with this, ever. This evening, I needed to speak to Walgreens, our Home Infusion company. I needed to find out if there was a branch in Philadelphia that might be able to service us some equipment. When the Pharmacist called to speak with me, she told me there were none in Philadelphia. She did however mention that there were some in Pennsylvania... and then asked if that was nearby!!! I was speechless... it was all I could do not to laugh. I wanted to say “No, but thanks anyway.” As I bit my tongue I was polite and respectful.... on the outside. This is a Pharmacist mind you!
Feeding Therapy/ Swallowing Clinic
There has been lots of talk lately about intensive feeding therapy programs for Ian. I have had at least 4 or 5 medical professionals say the longer we wait, the harder it will be to teach Ian to eat again. G Tube fed children simply lack the desire to eat most of the time because all their nutritional needs are met by tube..... no need to eat! CHOP has a large intensive program and I called earlier in the week to inquire.
Now that we have been admitted, they will be coming to do a consult. I believe they will do another swallow study since so much has changed since the one in 9.2011 prior to the Nissen and G Tube surgery. I’m not sure what they will find because Ian complicates it more, go figure.
In additional to having anatomical and physical reasons for rejecting food, he has a strong behavioral component now. He will gag at the mere sight or offerings of food sometimes. Certain words have even set off the retching before. However, sometimes he surprises us. Tonight, he ate an entire french fry. I cannot believe the last time he ate that much... probably when we were in the hospital last for the viral gastroenteritis.
There is potential for inpatient programs that are intensive therapies. I don’t know which way it right, and I don’t think there necessarily is a right and wrong. I don’t want to force my child to gag, vomit, and choke on food, but I also know that the muscles need retraining before they can get used to normal functioning. He needs to re-learn how to eat. We will here from them next week most likely.
Moving along, we feel good about being here with Ian. I really don’t think we could be in a better place and if we were somewhere else, I would be wondering if we were missing something. Everyone has been so supportive. I literally have hundreds of people praying for our family whom we have never met, in person. Some I have never spoken with and probably will never know about. Candles are being lit and prayers groups are formed. We have even had Ian added to Franciscan Friars National Prayer Circle. Regardless of faith or religious background, all the support is truly welcomed.
I have many people ask me if it is ok if they pray for us. I never doubt myself in answering this question. I believe that determination, knowledge, and support have blessed our child, and our family in ways unimaginable. It is because of all of you that we get through each day. The response is heartwarming, and overwhelming. Thank you to each and every one of you for being there.
As we gather more information over the next week, I will make sure to keep updates coming. Our little Ianer Beaner is being strong and is still the happiest sick kid I know. His biggest concern is the initial fear of someone entering and the irritation of the equipment. He continues to run around laughing and giggling. If we are going to run the course of chronic disease for a long time, I can’t imagine a better way.
With tomorrow being Easter, we will be watching him play with all kinds of things. We brought his basket filled with goodies with us so he could have Easter in the hospital. While we didn’t dye eggs this year, we will be playing with plastic eggs. It is hard to fill an Easter basket for a child who does not eat. Toys and trinkets will bless his day and hopefully more giggles.
Goodnight, and God bless all of you!