Owen was in the hospital for a few days at the end of April...
He started running fever at school on a friday afternoon (April 20th) and was sent home around 2:30. His fever was just over 101, so we got him home, gave him some ibuprofen, snuggled on the couch, and watched a movie. Owen only made it a few minutes into the movie before he was sound asleep. We decided to let the ibuprofen kick in and let him try and sleep it off, before we attempted to get him to eat...which is always our ultimate goal when Owen gets sick! He seemed to be feeling better when he woke up and actually ate a little and drank his formula.
He had a pretty high fever for the next 48 hours, but we alternated between Tylenol and ibuprofen every 4-6 hours which managed it pretty well. He kept a little bit of an appetite, drank his formula, and did a lot of snuggling/sleeping and... by Sunday he was fever free! Yay! He was still pretty tired, but was eating better and didn't have a fever. At this point, we thought we had made it through this illness without having to go to the hospital.
He went to daycare on Monday and Tuesday, but still had a decreased appetite and wasn't quiet himself. It was a gorgeous day on Tuesday and I got off early, so I picked up the kids and we headed home to play outside. I noticed that Owen was a little sluggish when I picked him up, but I was wishfully thinking that he was still recovering from being sick and that he probably didn't get a good nap at daycare. But I knew it was time when we got outside to play and he was just sitting or laying down and asking me to hold him. He wouldn't jump on the trampoline (one of his favorite things to do), play ball, or play with Ava Kate....he just wanted to lay on Ava Kate's blanket. At this point, we decided that we would eat some dinner, change clothes, pack a bag, and head to the hospital (after shift change).
being transported to radiology via the choo-choo train....he kept saying chuga chuga choo-choo!
After dinner and preparing to sit in the ER with a 3 year old (packing a bag with snacks, phone charger, Ipad, change of clothes, candy, etc) Owen and I headed to the hospital while Josh stayed home with Ava Kate. We have a VLCAD protocol letter that helps us navigate our way through the ER and we've unfortunately been to the hospital quiet a few times, so the process went pretty smoothly. They drew blood work to run his VLCAD labs and ran his IV at the same time....one less stick is always a good thing.
poor baby passed out around 11pm before they even got us in a room...
They swabbed him and tested him for everything and sent him for a chest x-ray as well. Turns out, he had the flu (influenza type a)! Talk about feeling like a terrible mom...not only had I not taken him to the hospital soon enough, but I had also sent him to daycare with the flu! Ugh....
Enjoying some snuggle time with Aunt Anna....
The biggest concern was Owen's VLCAD, not the flu. VLCAD not only causes Owen not to be able to metabolize long chain fats, but it also causes him to break down muscle when he is sick. Typically people store fat for energy, which is broken down for energy during illness. Owen, however, does not have any fat storage, so his body starts breaking down muscle for energy. When his first set of lab results came back, his cpk levels were 864 (typical levels for Owen are in the low 100's) which indicated that his body was breaking down muscle. Owen's protocal is to draw labs and immediately start an IV of d10 at a fast rate (160) for 6 hours and then re-run labs. So by the time the first set of labs were back, Owen had been on the d10 IV for about 1.5-2 hours and they decided to admit him and move us to the pediatric floor.
The second set of labs were drawn around 5 am on Wednesday morning and came back around 9:30 am showing that cpk levels had dropped from 864 to 591. They were moving in the right direction, but not as fast as I had hoped. Owen was acting better, but was still pretty lethargic (which is not typical for him after a round of d10....he is usually bouncing off the walls). At this point, I called and consulted with our doctors/nutritionist at ACH, who ended up recommending another round of d10.
Because the cpk levels were slow to normalize and Owen had the flu (which is unpredictable in length) and Owen still wasn't eating, they decided to keep us for another night. The third set of labs came back around 8:30pm on Wednesday night and showed cpk levels to be 456. This was disappointing news and concerned Josh and I. We had been in the hospital Owen several other times due to illness and VLCAD, but it had always only taken one round of d10 to get his cpk levels normalized and Owen back to himself. So, the goal for Thursday was to get cpk levels closer to normal, to remain fever free, and to get Owen to eat! Josh showed up on Thursday morning with one of everything off the Chick-fil-a breakfast menu...seriously! Owen hadn't eaten in 2 days, so counting fat grams was out the window! With all those yummy options...he only ate 2 hashbrown rounds and a bite of a mini chicken biscuit :(
After a not so big breakfast on Thursday, Owen slept while we waited on Dr. Lovell to round and discuss cpk levels and discharge. After talking with Dr. Lovell and consulting with our doctors at ACH, we decided to stay for the rest of the day, wait on lab results, monitor Owen's behavior, and try to get him to eat. If Owen ate and cpk levels continued to normalize we would go home that night.
Owen ate half of a turkey sandwich and some applesauce for lunch. Yay! AND...The fourth set of labs came back with ckp levels down to 311....
We're going home!!
We continue to learn about VLCAD and how it effects Owen with each experience. It's so hard to know what to do and when to do it. Each normal childhood illness affects him differently and we try to sick to the guidelines of "if he's eating well and drinking his formula, he's okay", but sometimes that's not the case. We don't want to run to the hospital every time he gets sick...and subject him all the blood draws, IVs, etc, but we also don't want to wait too long and let him get to the point that his body is breaking down muscle for energy. Owen is still the only child in Arkansas with VLCAD, so this will continue to be a learning experience for all involved....but hopefully as Owen gets older, he will be able to understand his own body more and be able to tell us what his experiencing.
