Little guy is asleep right now, so I thought I would post a recap of what has been happening the past few days...although a nap sure does sound good right now, as last night's 2 hours of sleep are going to catch up with me eventually. Seriously though, how does anyone get any sleep in the PICU? I mean it...I'd like to hear some tips for getting a least a little shut eye tonight.
Nathan started with some poopy pants on Thursday, but nothing that slowed him down. On Saturday evening, he started to run a fever which got progressively higher throughout the night, despite motrin. He was one sick kiddo by Sunday morning and threw up a couple of times and had a really high fever, but he was still drinking. He slept literally all day long. When he woke up at 5:00, he had such a high fever and proceeded to throw up or retch just about every time he moved and could no longer keep tylenol or motrin down. He was so sick, and after pondering for about half an hour on whether or not we should take him in, we decided that it was indeed time.
I only had to wait about 5 minutes in the overflowing ER before they wisked us back. At that time, Nathan was extremely lethargic, so they moved quickly on getting him meds and an admission. I have been highly impressed in the medical personelle here. They have gone by Nathan's ER/admission protocol letter for mitochondrial patients to a T and have been very vigilant with treating him quickly. Due to the nature of fast decompensation with mito and how sick he looked and how many meds he had to be hooked up to, they made the quick decision to send Nate up to the PICU. It was a really long night with vitals every 2 hours and glucose checks every hour along with 2 IVs (arm and foot) for the many meds, and multiple labs. Neither one of us got a lot of sleep, but the stress of the night was well worth seeing Nathan sit up again this morning. He had gotten to where he couldn't lift his head last night, so I knew he was coming around when he tried to prop himself on his elbow first thing this morning. And then when he kept pointing at the door and repeating "Bye Bye. Bye Bye." Poor little guy did NOT like being here for the first night and half a day.
We thought that Nathan must have gotten dehydrated, but that wasn't the case at all. Instead, he was in metabolic acidosis. His body had obviously gotten tired of fighting against whatever he is fighting, and it started to decompensate really quickly. Thankfully, we caught the acidosis in the early stages and were able to reverse it with Dextrose 10, insulin, fluids, and IV carnitine. This morning's labs showed a normal lactic acid and other troubling labs, for which we are very thankful! He did have some labs that showed that his cell turn around rate was really high. This level has always been high on Nate, but it was twice the level it usually is even for him. Hopefully it is just the extra stress from everything that is causing his cells to act inappropriately...hopefully.I just took the little guy on a wagon ride around the PICU, and he ate a few dry cheerios when he returned...the first solid food he has had in a couple of days. Unfortunately, he has another fever and is starting to retch from the cheerios. His darn stomach just doesn't handle stress much at all. Other than that, he is starting to smile again and say "Hi" to anyone who passes by our room. He's coming back around, the little fella. After talking to the attending a little bit ago, she said that he will be release tomorrow at the earliest, and we still need to get a couple more rounds of labs on him. Hopefully, we will be out of here in no time.
A rapid decompensation in mito patients can be quite serious (in the worst way), and I am so thankful that we have a wonderful hospital that is aware of the dangers of this disease. I have been nothing but impressed with the staff here. And thank you so much for your prayers during this time...we have felt them. And apologies to those of you coming from Lynette's blog on the heavy post...welcome to getting to know us. :) Thank so so much for the honor of showcasing this blog, Lynette. You are the sweetest!!
I will try to update when I can, but this post has already taken most of the day as my little man just wants to be held...and I love to hold him.