Well, even though it’s 80 degrees, summer is over… how do we know? Isaac got sick. And when Isaac gets sick he doesn’t mess around, he does it up right!

Two weeks ago the girls brought something home that for them manifested itself as a high fever, body aches, lethargy, chills, a stuffy nose, a small cough and blood shot eyes (this is the Adenovirus, so all of you who have or had these symptoms this is what you got!) This lasted for them almost a week. But Isaac got it and made it his own… that usually means a near death experience, he’s a tough-guy so that’s just how he rolls, ya know livin’ on the edge.

Isaac first got sick on Friday at 3:00 am. He was sleeping but breathing hard and fast and his sats (oxygen levels) were sporadic and he starting lurching. Please keep in mind that due to the Nissen Isaac cannot throw up. But he can heave and lurch which is painful and can cause the Nissen to tear loose (that is very bad). So we gave him some Zofran (anti-nausea med), I gave him a priesthood blessing and we slowed his G-tube feed to 30 ml/hr rather than his 60 ml/hr. His breathing seemed to normalize and he stopped lurching. So we went back to bed. The next day seemed okay, but he did have some lurching, diarrhea, and a stuffy nose, he also slept more than usual and refused to eat by mouth.

Saturday morning everyone seemed to be healthyish and we had plans to go to “Broomfield Days” (our local community festival) with Bryce’s family. So we woke up at 6 am and started dressing up our kids like clowns for a contest (we have titles to defend!) The girls dressed up like happy super cute clowns and Isaac went as a firefighter clown; we even set his walker up like a fire truck. The “oooohhh, look at him”s and “awwwwe, how cute”s and “he’s a little fireman”s were incessant and unrelenting, but well deserved. Just kidding we eat it all up and are very proud of him and know that he is pretty much the cutest little guy in the world and love showing him off. Our offspring defended their titles with honor and won tons of prizes including a bike and a 4 ½ foot tall giraffe (“pudraff” as Bria calls them). Bria got her picture in the paper for the third time in two years! After the kids (and Jenn) rode in the parade in their clown costumes, Kaylee started to shiver again and feel feverish and Isaac started to lurch some more. We vented Isaac’s stomach and drained some of his breakfast out to stop him from trying to throw up. That seemed to work. After a little while he just ran out of energy and fell asleep in his stroller (in retrospect he likely had low blood sugar, but we had no way of knowing at the time). We decided to go home early and allow the kids to rest and get some lunch. The girls both fell asleep. Isaac continued to have diarrhea. We tried feeding Isaac and he started lurching again so we gave him some Zofran. Feeling like we might have to take him in to the hospital we kept a close eye on him, he seemed active and his sats looked good. So we thought we might make it through this… “oh, how the proud fall!”

Since Isaac was sick and could not hold any of his normal blended diet we had no choice but to feed him Pedialyte through the night which is what the doctors always recommend.  This is good for replenishing ones electrolytes and hydrating the body again but in retrospect it was not a good idea. In the morning (Sept 20th: Sunday)  he was puffy and swollen. He was like a limp rag, no energy, his oxygen levels were 88 on ½ liter when awake (that is bad FYI) and he just wanted to lay down. He was also congested, all in all he was miserable. After much consideration we had another elder from church come over and we gave him a blessing. Jenn then took him to the ER at Children’s in Aurora. In the ER they found that his sugar levels were 42 (that’s VERY low; the norm is between 88 and 140 or so). The doctors immediately began an IV, gave him a dextrose dose of 10%, and began drawing blood for a lot of tests.  They also did a urine test and found that he had ketones (Ketone is a chemical produced when there is a shortage of insulin in the blood and the body breaks down body fat for energy). He was also diagnosed with the Adenovirus. After being in the emergency room for 5 hours they admitted Isaac.  As soon as Jenn and Isaac got up to the room, they checked Isaac’s blood sugar again and he had dropped to 36.  At least 6 medical staff came rushing in to hook Isaac up to every monitor they have and pump 10 % dextrose into him again but this time on a continuous drip.  Isaac was very lethargic and all he wanted to do is sleep.  This, of course, made everyone nervous as he could lose consciousness any minute. They tested his blood sugar levels again that evening and they did go up. Over the next couple of days Isaac’s oxygen sats got better and he was able to come off of oxygen during the day.  He stopped trying to throw up and we were able to feed him 105 ml of his blended diet over an hour (This is his normal amount but at a very slow rate).  Isaac slowly gained energy back but his blood sugar levels were all over the place.  At one point they even had to raise his dextrose level to 12.5 %.  The doctors informed us that with this level of sugar his veins would become very stressed but we did not have a choice.  Isaac was not having very wet diapers despite all the IV fluid that was going into him with the dextrose and this caused the doctors to question where all the sugar and fluid was going.  They told us that Isaac was the biggest question mark (as well as the cutest kid) on the floor and that we might have to go to the PICU (pediatric intensive care unit).  Fortunately they got his sugar under control and he started having wet diapers again so he was able to stay in the same department. But things still did not make sense. In the process of trying to figure it all out Isaac got to add two new doctors to his entourage; he is at 25 doctors and therapists. His new additions are an Endocrinologist and a Metaboligist. His test results kept coming back normal except for low Potassium, Iron, Vitamin D,  and Cortisone. I had to make Isaac’s food fresh every day and find a way to get it to the hospital as their policy did not allow them to make his food and Isaac’s food was only allowed to be kept for 24 hours at a time. By Thursday we were sure Jenn and Isaac would get to come home but at the end of the day the doctor on call said that his eating schedule was not narrowed down enough to an exact science of how often, how much, and how fast he should be eating.  Over the next 4 days Isaac was tested with at least 200 pokes trying to figure out how to keep his blood sugar levels normal and consistent before, during, and after he ate.  During this week Isaac’s G-tube button broke (the balloon popped) so a new one had to be ordered. We switched Isaac from a Mini G-tube button to a Mickey G-tube button. This will help us to be able to feed Isaac easier when doing bolus feeds.  Jenn and I had to learn how to check Isaac’s blood sugar levels on a daily basis and learn how to give him a glucagon shot in case his blood sugar levels ever get lower than 50 again. By the time we left all of the nurses and doctors had fallen in love with Isaac and were both happy and sad to see him go. In the end, Isaac was diagnosed with Ketotic Hypoglycemia and dumping syndrome.  These may or may not continue for the rest of his life.

There are a few test results that have not come in yet but to update you on some other things you may not know about: Last week we found out that Isaac does not have CHOPS and our insurance does not want to send him to Philadelphia until we find out if Isaac’s syndrome diagnosis has anything to do with Cornelia de Lange.  Isaac is now being tested for a syndrome called Kabuki Syndrome as they have Cornelia de Lange symptoms and Hypoglycemia.  If he does not have this they will begin Exome Sequencing tests to find out what Isaac has.

Thank you to the many people who helped us throughout this week.  We had the perfect storm with all of our children being sick at one point and everything that came with it.  Family and friends came to our rescue many times once again and we could not have made it through this week without you.  Thank you! Thank you! We are continually blessed to have you all.