Saturday, September 1, 2012

Crazy Doctor Week: Caleb's Medical Status

Last week, on Friday, Nate and Caleb went with Grandma and Auntie to the Brigham City Temple open house.  Russell and I were planning on going with, but since he was sick we stayed home and had a pajama day.  Nate was really looking forward to showing Caleb the Temple, since he loves looking at pictures of them, singing the Temple song, and gets so excited every time we drive by the nearest temple.  So they went to Grandma's house for lunch, after which Caleb threw up.  It didn't seem like a big deal, because he has been throwing up once a day lately.  But then he fell asleep in the car, and it wasn't even nap time yet!  Then, once they were in the Temple, he wanted to be carried everywhere.  This was clearly not the Crazy Cal that we are used to.  After touring the first little part of the Temple, they headed upstairs.  While close to the lobby, Nate recognized the warning signs and somehow communicated to the tour guide that Caleb was going to throw up.  She pointed to where the bathroom was and tried to help him over to it, but Nate knew they only had seconds to get to a "vomit-safe spot" and between him and the bathroom was carpet.  [You may not think much of that small fact, but when you deal with vomit throughout your house on a regular basis it sure makes you glad that the majority of your house is hardwood floors and/or laminate.]  So, Nate rushed to the nearest spot of tile, which thankfully was very close, and, being the wonderful hero that he is, sacrificed himself for the sake of the beautiful, new, clean temple.  Yes, he caught most of the vomit on his white church shirt, although of course some of it landed on the tile.  He was covered.  And he threw away that shirt when he got home.  No point in trying to clean it, he said.  It was a lost cause.

So, Caleb and Nate had to spend the next little while waiting for their tour group to get back before they could go, and then they had to spend the next hour in the car in their vomit-covered clothes.  Caleb fell asleep in the car again, and once they got home he dry heaved many times.  We put him on his feeding pump running clear gatorade into his stomach at 45ml/hour all night.  He slept for 15 hours!  He normally sleeps for 13 hours.  When I got him up, I detached his pump and he fell asleep on the couch, which he hasn't done in probably about a year!  So I thought to myself, "Self, I'm going to give him a few ounces of rice milk to see if the extra nutrients and calories, although gentle on his stomach, will give him some energy."  So I hooked up his extension and "vented" his stomach (letting his stomach contents into the extension tube; we do it to get any air out of his stomach and to check if he is digesting his food fast enough) and what did I see?  Blood.

I've seen specks of blood in his extension tube before, which can be attributed to irritation, but this looked like diluted coke.  The blood, paired with his symptoms, was very concerning, so we packed up right away and dropped Russell off at Grandma's and Grandpa's and headed straight to the Children's Hospital.  [We have learned never to take a complex child to the local Emergency Room.  They are really bad at putting IVs into dehydrated children's veins and they never seem to know what to do if the answer isn't obvious.  And they don't have access to GI doctors.  So the Children's Hospital it was.]

We got there and Caleb was so brave.  He enjoyed "I Have a Dream" from Tangled while they put his IV in.    They ran the regular blood tests and everything came back normal except for his blood sugar.  A "healthy" blood sugar level is 70-100, but Caleb's was at 40!  So they immediately gave him sugar water and a few hours later checked his blood sugar again.  It was at 68, so they gave him more sugar water and called it good.  His blood pressure was on the low end of normal, which was slightly concerning to the doctors.  They decided to admit him to the hospital based mainly on his appearance--he was so, so lethargic.

He had retched many times that morning, but after being admitted he was able to keep food down.  We put him on rice milk through his pump and he slowly got better and better.  By the next afternoon they discharged him and we went home!

They were saying that it was most likely a virus that made him throw up, but since he didn't have diarrhea (in fact, he was constipated) they said that the virus most likely caused temporary gastroparisis, which is where the gut literally becomes paralyzed.  They said that the blood must have been from the irritation of throwing up so much and the low blood sugar was from not being able to keep much down (although he kept down over 20oz of gatorade throughout the evening and night before we went to the ER, which should have helped his blood sugar, but didn't).

But I'm not buying it.  It's normal for him to be constipated to the degree which he was, and although recently it was normal for him to throw up once a day, in the past it was completely normal for him to throw up three times a day.  And he never had blood in his stomach or problems with low blood sugar (that we know of).  And no one else in our family caught his "virus."  I think it was all related to Caleb's digestive problems, most likely the mystery that causes him to vomit so much.

To me, the symptoms mimic FPIES (Food Protein Induced Entercolitis Syndrom).  The only problem is that we micromanage Caleb's diet to a very, very strong degree and we know that there is no way that he ingested a new food that he could have reacted to.  So it's a mystery, once again.

So, we scheduled a follow-up scope with the GI doctor.  But just a day after discharge, Caleb caught Russell's cold.  I gave him the only benadryl that I could find without food dye, but it turns out that one of the inactive ingredients is natural banana flavor.  So, although I only gave him one dose, it is best to wait a few weeks for any eosinophils that it may have caused to be out of his system before we scope.  And he can't have such respiratory problems if he is going to go under anesthesia, so we will have to wait anyway.  Hopefully we won't have to wait more than two weeks.

While Caleb was still suffering the aftereffects of his vomiting/bleeding/blood sugar/blood pressure problem and simultaneously dealing with a horrible cold, I have never seen him so sick.  He was pale.  He had no energy.  He couldn't even talk fast.  He didn't torment the cat or the baby.  He got skinnier by the day.  He would wake up many times each night coughing, crying, "Daddy/Mommy, hold me."  I would lay awake at night, trying to prepare myself to see how wasted away he would look the next day.  I can honestly say that I've never been so worried for his life.  Not even when he was a tiny preemie on life support.  I knew then that he would get better, but now I just don't know what the future holds.  Will he always vomit?  Just how much weight can he lose?  He has only gained 1lb 5.5oz in the last nine months.  Two months ago he weighed 9.5oz more than he does now.  He only weighs 22lbs 6.5oz, despite all of our efforts to get him to gain weight.  We have now talked to three dietitians and they all say we're doing a great job.  What comes next?  How long will it take him to gain back all of the weight he has lost?  I wish I knew.
This was Caleb a month ago, when he weighed six full ounces more than he does now.  I want to cry every time I look at this.  It breaks my heart every time I see him without his shirt on.

Thankfully he seems like his old self today, a whole week after his hospital stay.  He still has a cold, but his color and his energy are back.  I missed my Caleb.

Now we need some answers, and maybe a new plan.  I can't live with the stress of it all, and Caleb can't weigh less than 23 pounds forever!  We have looked into what it will take to get him seen by a specialist in Denver, and as soon as I can muster the energy and time, I hope to get his medical records sent there for them to review.  But that's going to be quite the feat with his medical history.  Whew!  Wish me luck.  We need to get this boy feeling better!


MeganandClaudy said...

how scarey! At least you know you are doing everything you can. I will pray for you guys, and pray for peace. There is nothing like worrying for your children. You guys can get through this. Someday when he is an adult and healthy, he won't believe all of the stories you'll have of him when he's little--and he probably won't even remember them!

Katie Bradley said...

It's all such a mystery. How do you know when he's just got an infection or virus or something and when it has to do with EE? So difficult. If you were to go to Denver, I know my in-laws would be happy to house you, though they're about 45 minutes from the city. It'd be so great to get the best of the best to look at what might be going on with him- he's such an incredible kid, how do we get him healthy?

Coffee Mama said...

I agree, we can schedule our Denver appointments together! You need better specialist working with your son. I know the feeling!