(this is not how Micah looks right now, but it was the last cheesy smile I got on camera before he got sick)
Sorry for the delay in updating since Colleen posted to the blog on Sunday morning. Micah was in VERY rough shape over the weekend and we are beyond blessed to have him still with us.
When Micah hit the ER on Saturday, he was quickly diagnosed as "septic," meaning he had some sort of infection raging through his blood stream. He was also terribly dehydrated. He had been sick since overnight Monday. His temp and rash started Tuesday. Pediatrician swabbed for strep on Tuesday but it was negative. He had a super red rash on his belly on Wednesday (I posted a pic on Facebook... I'm glad I have that to go back to because that's my only documentation of the week and I think it helped the Infectious Disease doctor determine a treatment regimen this week).
Wednesday night his diarrhea started and he still didn't feel better on Thursday so I took him back to the pediatrician. Bloodwork showed a white count that was barely above the normal range. With no infection present in visible places (g-tube site looked fine, ears clear, throat red but not infected), the doc recommended to keep trying to keep him hydrated and bring him back on Saturday if he's not better.
Micah spent the majority of last week rolling around on the floor and appearing quite uncomfortable. Being held didn't make him feel better. He didn't sleep more than 1.5 hours at a time between Tuesday night and Friday. Then Friday night (after a very long day of 14 messy diapers.... I'll spare you the gory details) he slept from 11pm to 6am. I did not wake him to give him anything through his g-tube because he was so tired he was appearing delirious on Friday night. Sweet little guy... he kept signing "eat," and would open his mouth for baby food but once it hit his mouth, he didn't swallow it.
Micah does not know how to drink. He's had a few sips of water from a cup before, but he does not allow much of anything to get close to his lips. I'll share more about his feeding issues in a later post. Anyway, Micah signed "water" constantly on Friday. He even swallowed some when we tipped a cup to his mouth. Most of the water ended up on his front because he didn't know how to close his mouth and swallow it. But he knew he wanted to drink. It was heartbreaking. He finally had the desire to drink, but he didn't have the energy to learn how.
Anyway... after his long sleep on Friday night, he woke up with green bile leakage from his g-tube site. I took him to the pediatrician again. His white cell count was now in a range that looked like he had some sort of bacterial infection, so the pediatrician gave him a shot of rocephin (a heavy-hitter) and a prescription for an oral antibiotic. We decided to try to hydrate him at home for a few more hours before taking him to Children's for IV fluids. In retrospect... (trying not to go there)
So, he had been to his pediatrician on Tuesday, Thursday, and Saturday morning. It was not for lack of attention that he ended up so sick. Apparently kids tend to "tank" quickly, rather than do a gradual decline in health. Micah hit that point on Saturday afternoon. He tanked. His blood sugar was 5. His respiratory rate was in the 20's. His blood pressure was down to about 40. It was very difficult to get a line into him because he's a tough stick on a good day, let alone when he's dehydrated.
I think at one point I counted 13 medical personnel in the critical ER room with him. He vomited green bile while he was being intubated (meaning that got into his lungs... though that hasn't mattered given the fact that he has received so many antibiotics that it would be tough for any bacteria to grow in his body right now). Two docs came down from the PICU and within minutes he had a central line placed and he was intubed. I asked at some point, "When is he going to get moved upstairs?" The answer: "When he's stable enough to be moved." Honestly, this all happened so fast that I was still thinking he just had some sort of stomach bug and he was severely dehydrated. Sometime while all of the craziness was going on, someone from registration came and got him in the system.
Saturday night was one of the more difficult nights of my life. Micah was not without a doctor (or two) by his side in the PICU for hours. I mentioned to the doc that Mark was coming with some stuff for me and to see Micah. We were going to trade places (I would go downstairs to watch Nathan and Matthew while Mark went up). The doc told me that she would like to talk to both of us together about Micah's condition and she would find someone to watch the other two boys. Okay, kids under 5 aren't allowed in the PICU. How will that work? "Don't worry about that." Um, okay.
How sick was Micah? The doctor told us, "I'm concerned about Micah's ability to survive this."
But that doctor doesn't know our little warrior. More importantly, she may or may not know our God. But regardless, it appears that God has more in store for our little guy here on this earth. He made it through the night, thanks to the prayers of hundreds, I believe. And with a lot of help from a ventilator, a defibrilator, fantastic medical staff, and lots of drugs. He kept getting more red and VERY swollen. He was getting tons of fluid. His BP had dropped low enough that the doctor was concerned about blood flow to his brain (he had a CT scan overnight and there was no swelling, so that appears to be okay).
So... they were able to control his BP and his heartrate most of the night (barring the one time he was in atrial fib and needed to be shocked... scary). And his kidneys were still producing urine this whole time (his bladder got super full, though, as no one thought to cath him until the middle of the night after his belly CT showed the size of his bladder). By Sunday morning, he was doing a bit better. Still not out of the woods, but much better than the day doc thought he would see when he got in.
Sunday afternoon, the Infectious Disease doctor came in to check Micah and talk with me. I think she was there for at least 2 hours. Her best guess at a diagnosis was Toxic Shock Syndrome, though we still didn't have an isolated cause for it. She started treating him with IVIG, which is basically a transfusion of other people's antibodies in hopes that those antibodies would kill whatever toxin was in Micah's blood that his antibodies were unable to kill. It appears that (and the additional antibiotic) are working. He was doing better last night after that was added.
Early Monday morning the docs put in a chest tube to drain some of the fluid accumulating around his lungs. It gave him some very quick relief by draining a bunch of fluid off. Micah's color has gotten better all day and he is becoming less swollen (Sunday morning if you touched his skin, you felt like you were touching a drum because his skin was pulled so tight). He basically had about 8 POUNDS of excess fluid in him (keep in mind that he only weighs 22 pounds, if that).
So... after a couple of days, are you wondering, "How in the world did Micah get Toxic Shock Syndrome?" You are not alone. Everyone has been wondering that. The cause has likely been idenfied by a blood culture result that came back today. His blood contains "gram positive cocci in clusters," aka staph infection. Want to see a picture? Click here. Or look below. Mark and I went to a friend's birthday/Halloween party dressed as staph (don't ask... she's an infectious disease doctor, go figure... and she's the one who updated my blog on Sunday morning).
How ironic that Micah has our most original Halloween costume running through his veins.
Going forward, he needs to continue to pee off all the fluid. We spent the first three weeks of his life praying for poop. Now we're praying for pee. Gotta love being a mom.
So what went wrong? Could this horrible TSS have been prevented? Not sure. But there are a few things for which I wish we could get a "do over."
1 - Take him in for IV fluids earlier. Next time he gets a nasty stomach bug, you can bet that he'll be getting a bolus of IV fluids at the hospital to give his intestines a break.
2 - Do not let an antibiotic into my child's system before having a blood culture run. Why? Because the rocephin shot he received at the pediatrician's office compromised his bloodwork in the hospital. Once you have an antibiotic in your system, the blood cultures that are run do not have accurate data because there's an antibiotic messing with it all. Side note: that said... if he hadn't had that rocephin shot, he might not have made it out of the ER and into the PICU. But if the pediatrician had run a blood culture before the shot, she still wouldn't have known immediately what bacteria was there, but at least there would have been a quicker diagnosis. Hind sight is 20/20, though.
3 - Take better care of his g-tube site. A staph bacteria needs a place to enter the bloodstream. Best guess is that Micah's entered through his g-tube site because he did not have any open sores on his body.
Thank you for your continued prayers. Micah is making progress, but we have a long way to go before we bring our little boy with the cheesy grin home.
On a separate note... my mom came into town yesterday to help with the other two boys this week. She fell down the stairs and broke her ankle. We had an ambulance at our house on Sunday night at 10:30 to take her to the hospital because we couldn't get her to the car. She was white as a sheet and almost passed out. She stayed at the hospital and had surgery Monday morning to place 2 pins and a plate in her ankle. She'll likely be discharged on Wednesday. It appears she'll be spending a couple of weeks on our sofa. I won't lie... we didn't need that to happen. And I feel badly that I can't care for her right now. But with Micah in the PICU, I know she understands. We'll find some help for her at the house.
We have had so many offers to help with the boys and to bring meals to our family. We are quite blessed with a great community of new friends here in MN who have pitched in mightily to serve our family.