On Tuesday, Domenic was admitted to the Childrens Hospital. The purpose was to have him cleaned out ( clean his stool out of his system ) so that he could have an Endoscopy and full Colonoscopy on Wednesday. We arrived at 11:00am and it took them until close to 4pm to get him settled in his room and start the ‘cleaning out process’. They inserted a N.G. tube ( Nasal Gastric Tube ). A N.G. Tube basically is inserted into his nose and goes down into his stomach. From there, they did a constant drip of a medicine called ‘Go Lightly’. It’s a medication that helps to push everything out. The idea was that by late Tuesday evening they would have him completely cleaned out in order to do the procedure Wednesday morning. Well, that really didn’t work out as planned. It would seem that Domenic’s G.I. track didn’t want to cooperate. He still hadn’t passed any stools.
Around 6pm on Tuesday Domenic started to become extremely lethargic. It would take close to 4 – 5 times asking him a question to get even a slight response from him. He basically just stared at the television regardless if you were speaking to him or not. After speaking with the Doctors about it, they decided to put an I.V. in him, but also took some blood work to see what might have been causing it. His blood sugar dropped to about 50 which was way too low. They then increased the sugar content of the I.V. and slowly got his sugar up to about 75, which brought him out of the danger zone. You want your sugar level somewhere around 125, but 75 was much better than 50.
By Wednesday morning, Domenic was starting to act like himself again. Having the I.V. in him all night helped to get his blood sugar level where it should be. The doctors were concerned though that he should have had enough liver sugar reserves to keep him going on Tuesday.
The doctors kept monitoring his G.I. in hopes to be able to perform the Colonoscopy and Endoscopy on Wednesday, but by late morning they could tell he wasn’t cleaned out enough. All of our curiosity kept growing as we were unsure why it was taking him so long to get cleaned out. Another child was admitted to the same floor as Domenic on Tuesday morning, was given the Go Lightly, and was cleaned out by mid afternoon. She had the procedure that same day and went home that same day. And here was Domenic, day two and still not nearly cleaned out enough. It was kind of proving all of our suspicions that something was definitely wrong with Domenic’s G.I. track. They canceled the procedure for Wednesday and put him on a stand-by list for Thursday.
Thursday morning came and by mid morning it seemed like Domenic was cleaned out enough to have the procedure done. We were just waiting on the O.R. to let us know when they had a spot open for Domenic to have the procedure done. They called up to us at about 12:15pm and said it was time. The procedure was suppose to take anywhere from 30 minutes to 1 hour. It took roughly 2.5 hours. As soon as the procedure was over, the doctor came into the waiting room and took Lil and I into another room to discuss everything with us. The doctor said everything looked ok with the naked eye in his esophagus and stomach. The right side of his G.I. track also looked good, but the entire left side of his G.I. track was completely inflamed and had puss packets
( sorry for the horrible image
) along the walls of the track. This not only confirmed everything we were thinking, but also gave us FINALLY a diagnoses. It was Crohn’s Colitis.
The doctor said Crohn’s Colitis is rare in children Domenic’s age. More than likely, Domenic was born with this. We can trace the symptoms back as far as when he was 6 months old. This also explains why Domenic has always been on the small side, and why his Development and Growth Curves have been slow and under the normal scale.
The good news was that we finally had a diagnoses and we could start treatment. The bad news is that there is no cure for Crohn’s or Colitis. Its similar to Asthma. You always have it, but you treat it so that you can limit the inflammation and attacks you have.
Because this disease is rare in children of Domenic’s age and his blood sugar levels being so low on Tuesday, the doctor felt it was best to bring in other specialty teams to consult with him. We wanted to make sure that there wasn’t something else causing all of these problems. I have never in my life seen so many teams of doctors. Thursday and Friday we were flooded with doctors. Every team of specialist have anywhere from 3 – 6 doctors on it and every one of them are hands on. It isn’t one doctor, nurse tech, or grunt doing all the work and reporting back to the rest. Each one gets involved and performs a thorough workup on Domenic. Its great, don’t get me wrong, but the bad part is that it kinda turned Domenic into a piñata. Obviously blood work was the major issue. Each set of specialist wanted to do their own set of blood work to see if his Immune System, Metabolism, Genetics, and other areas were playing a part in all of this.
Late Thursday, while all the other specialist were still doing their evaluations and work ups, the G.I. doctor and I were coming up with the best treatments for Domenic. The first treatment that we felt was the best course for Domenic was for him to have a N.G. feeding done on a nightly basis. Basically Domenic will receive 80% of his needed nutrients supplied to him through the N.G. tube nightly while sleeping. The nutrients is a constant drip that will be supplied to Domenic over the course of 10 hours each night. Not only will this help to get Domenic’s growth and development up to where it should be, but it also helps greatly to keep the inflammation down in his G.I. track. They call it Nutrient Therapy and its largely used in Europe. Domenic will also be taking another medicine 4 times a day to also help with the inflammation. The Nutrient Therapy helps so that Domenic will only have to take 1 medicine instead of others, greatly reducing side effects and other problems associated with taking prescription medication on a daily basis.
Today I had to take a class on how to administer, install, and maintain the N.G. tube. Needless to say, it wasn’t fun. The idea of having to insert a tube into my 4 yr old son’s nose and into his stomach, isn’t a fun thing to have to do. Infact, its downright scary.
We all thought today was going to be the day we got to go home. Then again, we thought that every day since Wednesday! But today the Metabolic Specialist team decided they wanted Domenic to do a 12 hour fasting test. This will help to see if Domenic is able to process sugar correctly and also if his Liver is storing sugar reserves correctly. The only way the test can be done is in the hospital, and I couldn’t bare the thought of having to come back and do this all over again. So we elected to just get it done tomorrow ( Saturday ) and hopefully go home on Sunday. I think Domenic is starting not to trust us ( Myself, my Mom, and my Dad ) because each day we keep saying he can go home the following day. Then the following day comes and we say the next day is the day we go home
He keeps looking at us funny like we’re lying to him or something
My low participation lately....
They wouldn't let us leave on Sunday afternoon until I successfully inserted a N.G. tube into Domenic. Domenic was very happy that Dad paid attention in the class I took
