I am not going to get into all the particulars (because I could rant and rave for a while), but Max has not been improving at home. His fever continues and does not let up even with medication. We finally convinced the pulmonary that he needed an antibiotic, but it was this morning and it was too little too late. With a fever that wouldn't seem to quit and worsening lung sounds we knew we were at decision time. His breathing respirations were consistently in the 50s vs. his typical 20s and he was just having to work so darn hard. Why are respirations important, well, given his short shallow fast breaths there was concern for gas exchange, we didn't want him exhaling off too much CO2, there was also the fear that he would simply wear out and not be able to breathe even with the Bi-Paps assistance. The LAST thing we want is an emergent intubation. We were so concerned that we actually had him transported via ambulance this afternoon. For those keeping track this is our 3rd ambulance ride in less than a year...not a trend I want to continue.I was a little alarmed when the paramedic with Max told the driver to roll "10-50"...for those in the know that means full lights and sirens, so sad Max couldn't appreciate this. I gotta say, it is a lot more unerving rolling through an intersection when that light is red and you are praying the other drivers are paying attention and did I mention rain and tornado warnings, sometimes I do feel like our lives are an episode of Grey's Anatomy.
Well, after spending all afternoon in the ER we were finally admitted to the PICU...they were seriously busy today. Max's chest x-ray does show "infiltration," but pneumonia results take at least 24 hours. They are treating him like he has...wait for it....wait for it...aspiration pneumonia! Hmmmm, sounds so familiar, oh I know, it's what I've been trying to explain to all of his docs for the last four days. Wow, it's almost like I've seen this before or heaven forbid can use my amazing mommy powers of deduction or that Aaron and I may not know crap about all of medicine, but we know EVERYTHING about Max. I just want to point out that I don't think we have avoided the hospital for 2 years on luck. I also think that the staff finds me, Aaron and Max overwhelming...how many type As can you put in one family. Just so you know Max also still has his wits about him, he is introducing himself as "DJ Max E Max" and then proceeds to do a little "beat box" for them. The staff has even commented on how polite he is, he even thanks Aaron after each cough treatment. There is nothing sweeter and more heartbreaking then hearing Max say, "Thank you Daddy" after Aaron does a cough machine cycle on him. I have to say Max has been much more in tune to the benefits of the cough machine this time, even asking to be coughed and directing Aaron to turn up the pressure settings, wise beyond his years. These are good signs. He is verbal and he is digesting food, we would be much more worried if these two things weren't happening.
So that is where we are at: Max's CO2 levels are normal and we are on some broad spectrum antibiotics. Our hope would be that we would see a turn around in the next 24 hours. A turn around would be lower temps and less work of breathing, also, getting off the supplemental oxygen (right now he is on 4 liters). I would love to make a prediction for this, but for my faithful readers you know as well as I do that Max drives this profile. Thanks for all the prayers. We will update again soon.
A few comments:
1. I am all chest-puffed-out Momma Bear FOR YOU right now. The word "frustrating" cannot possibly describe how you must feel after knowing+voicing what was wrong only to have doctors discard you. "Angry" probably isn't even sufficient. How dare they? Max is your child. You know.
2. DJ Max E Max is going down in history as the single greatest name in the universe. And he beat boxes for the doctors? I hope he wins an award for his awesomeness.
3. The fact that he thanks Aaron for giving him coughing treatments makes me ache. Max is so sweet, Traci. I mean, I know that you know this, but you have been absolutely and totally BLESSED with him. He is smart (perhaps too smart for his own good?), witty, kinder than kind, hilarious, and did I mention smart? He is a gift.
Posted by: Natalie | January 27, 2012 at 03:14 AM
Dear Traci,
All of us here at St. Doms are praying for Max's speedy recovery. He is amazing. Sending you my love and prayers. Hugs, Row
Posted by: Rowena Trzeciak | January 27, 2012 at 06:31 AM
Max is such a special child. He is so kind and smart and brave and strong. He is absolutely beautiful, inside and out. He is also amazingly blessed to have you and Aaron for parents. Yes Traci, he is :-)
Hunter would like you to tell DJ MaxEMax "hi" for him. You are all in our prayers and we wish Max a super speedy recovery. Nurse Robin
Posted by: Robin | January 27, 2012 at 02:01 PM