Tuesday scare

Pierce has been known to test my heart's function several times - thank goodness my heart has been able to withstand it all ;) We've dealt with things from him turning blue/stopping breathing/needing Heimlich (from aspirating) to scary breath holding episodes (from injury not out of anger/discontent). Tuesday was the day he decided to add unresponsiveness to the list.

Tuesday morning did not start like any other for Pierce. If you know that sweet little blonde haired boy of mine then you know that he goes a mile a minute from the moment he wakes up. He defines energy fairly well. You would also know that he is very persistent in getting what he wants, when he wants - he gets it from his mama. He also has the SAME routine every morning... as soon as we open his door, bright big smile followed by a hello then a "Milk, mama?" --- I give him a cup of milk, he crawls into "his spot" (also known as George's spot) on the couch, I put on the toddler equivalence to taking LSD (also known as Yo Gabba Gabba) and he becomes enthralled while drinking milk, curled up with his blankie........ So, Tuesday morning..... he came to us asking for milk - George told him to wait a minute. He asked me, I said to wait a minute, too. He puts his head down on my stomach and falls asleep for a solid 30 minutes. I needed to get up to get things ready for Brice so I placed him on the floor next to where I was. He woke up and asked for milk. I fulfilled his request and he laid on the floor drinking his milk... and continued to lay there... 7:30 rolls around and he is still there... George gave me a look in passing like something's not right because Pierce had his back to the tv... he was just so listless and so very lethargic. I took his temperature - a nice 98.5*. George left for work. 8:10am... Pierce is STILL in the same spot on the floor. I had to sit him up to get him dressed and I laid him back down. 8:35am... time to leave to take Brice to school... Pierce is still in the same spot/position. I pick him up and take him to the car... we head off to school.

At school, one of Brice's teachers asked if Pierce was okay. She commented on how quiet he was and how pale he was. I gave her a brief run down of our morning and how odd it was but that he was basically asymptomatic (aside from being lethargic and listless). It's now 9:30... I stop to get him a smoothie... he actually perks up for a solid 45 minutes! We leave one store to head to another one that is less than a minute drive from the first... he and I are talking and mid-word, I hear his voice drift off. I park, turn around and he is completely out. I take his vitals - resp rate in the mid to high 40s and heart rate is mid 130s. I notice that his arms, hands, legs, feet and torso were twitching - not convulsing - but twitching.... nothing alarming because he does this ,occasionally, when he is falling asleep - usually lasts about 5 minutes. 10 minutes pass and he is still twitching... I call our immunologist to get her opinion - she's in clinic so I leave a message.... another 5ish minutes pass and he is still twitching with the same vitals. I call our pediatrician - she doesn't have any sick visits but they suggest I take him into the ER. It hits me - my maternal instinct is telling me something is just not right but what? What is it? So I call my mom trying to hold back tears because I am legitimately worried. She says to go straight to Chnola. I call George, he suggests attempting to wake Pierce up... and then my phone starts to die.

I go home to grab my cell charger. While there I try to wake him up... except, that I can't. Several minutes pass by - I am shaking his leg and practically shouting his name... I start slapping his other foot, while shaking the opposite leg and saying his name very loudly... his head pops up, his eyes open for about 2 seconds, close and his head falls back to his chest. I decide it's time to head to the ER. I made another attempt, at a red light, to wake him up = unsuccessful... another attempt and he opened his eyes for a second... another attempt = unsuccessful. We get to the ER, I get him out of the car, walk towards the hospital, talking to him... he begins to become more alert and responsive. I wait outside for my mom to meet me - question whether or not I should bring him in because he seems better.... he pees all over my leg. My mom comments on how pale, clammy and cold that he is - she suggests that maybe it was a low blood glucose episode. She is diabetic so gold star for her on that brainstorm. We go to the car to change him and decide to head home for now to continue monitoring him (<-- any time I can bypass an ER trip, I 110% will). I gave him 5oz of milk on the way home - oh and Nana shared some gummy candy with him, too!

Once we get home, our immunologist calls. I brief her on our morning. She thinks the low glucose idea is a good thought. She still wants us to go in to the ER. She doesn't think that it is an infection but she wants someone to physically lay eyes on him and run some labwork. We (reluctantly) head back to the ER. Everything was okay until the triage nurse made my blood boil. Seriously, why ask a question if you aren't going to wait for an answer? "Why do you think it could be a low glucose episode" - "Well my mom is diabetic, she mentioned it and I ran it by our immunologist who thoug..." - "Does he have any health issues" - "yes, he has a mitochondrial disorder and is immunodeficient - his specific diagnosis is IgG3..." - "Why do they think he has a mitochondrial issue" - "well he had a muscle biopsy in November..." - "yeah, but what are his symptoms" - "what do you mean - then, now... I need..." - "what medications is he taking" - "leucovorin, levocarnitine, and OTC supplements" - "oh my god, he is just the cutest little thing - hey sweetie" - "so I know that he looks good but Dr. Pratt wanted us to come in to get him checked out, she wanted..." - "have a seat in the waiting room" - UGHHHHHHHHHHHHHHHHHHHHH, I was pretty pissed. I notice these two teenaged girls sitting across from us (likely 14-16 years old) - they were mouthing off to someone... I realize it's an NOPD. He tells them "I will not take those handcuffs off of you because you're not going to hit me and while you're in my custody, I am in charge. If a doctor needs to treat you, he will do it with you handcuffed." @#$#^$#^WHAT? Sure enough, they were both in handcuffs. I whisper to my mom that we need to find a new section in the room to sit in. As we pass by one of the girls GROWLS at Pierce (because he isn't terrified enough of Chnola, right?!). I stopped dead in my tracks with my head turning back to look at her with whiplash type intensity. I very bluntly said "Really?" to which she flippantly replied "yeahhh, really" (like whatcha gonna do about). I mustered up every bit of of self control I could find within my body and told her to grow up while walking away to them laughing at us. Sigh...

We waited about 30 minutes before we were called into the back. I asked our nurse if she wanted to actually listen to our events and his medical history and she did :) A doctor came in 10 minutes later and I told everything to her as well. She wasn't concerned about his glucose levels because we've never had an issue with those in the past. She gave him a physical, everything looked good. She ordered labs only because he was a mito kid. Everything looked good except for his WBC count being high. She said things would probably get worse before they got better and that he was probably contagious and that she expected it to result in a stomach virus. I emailed our immunologist asking her to take a look once she got in to the clinic in the morning. She emailed me back yesterday with the following:

I agree his labs support some sort of infection, likely viral but no way to know by the basic labs. His cultures are still pending so I will send the labs once they are all back....just remind me! How is he doing today? Has genetics ever said that he might decompensate quickly because of his mitochondrial disorder? wondering if that has anything to do with it. Glad you went to the ER so we have some support of a cause. Oh and his glucose was fine.

Talk soon

Yesterday, he wasn't himself energy wise but he also didn't have any new symptoms. And today, he is pretty much back to normal, no new symptoms to report either. We are still waiting back the results on his blood cultures although I anticipate those to be negative since he seems okay.


But I have to admit that I am REALLY confused about Tuesday morning. I am also a bit concerned/wanting to know more about the idea of him quickly decompensating due to his mitochondrial disorder. I placed a phone call on Tuesday to our geneticist... sent him an email yesterday and as of now, still no response. 


I wish I had answers. I wish I was smart enough to be able to answer my own questions. Tuesday morning scared me to my core - and for me it's a tad more frustrating because I have no answer as to WHY his body reacted that way. So really, I guess that's it... have a Happy Thursday.

{fear}

[this is the post in which so many of you will see that I am really not as strong as you think I am]

This weekend, I read a post on Band Back Together and it was like a light bulb went off in my head... definitely a defining moment for me.

I spoke with my psychologist today and she confirmed what I already knew... I am suffering from PTSD, anxiety and panic attacks.

Here is where I attempt to become transparent... Any time Pierce sleeps longer than he should or later than he should, I internally freak out. Recently, Pierce slept until just after 7am (not normal for him). While most parents would gladly welcome an additional hour of sleep, I laid awake from 6am on.  By the time 7am rolled around, I was in a full blown panic attack - heart racing and pounding, feeling like my sternum would give way at any moment and my chest would rip open. I laid there thinking those thoughts... you see, after you've watched your child turn blue and stop breathing, after you've watched your child turn blue and go limp countless times, after you've watched your child choke on things he likely shouldn't... your thought process changes - at least for me it has. I lay there thinking "what if I open his door and he is blue"... "what if I open his door and he is dead" - (as I type these words, my heart is pounding). And while I've been reassured that because of what I've been through, those thoughts are normal (for the circumstance) - what I say next, isn't normal. It takes me minutes - at times a couple, sometimes almost 10 minutes - to gather enough strength and courage to open his door... because I have this image of my blue baby stuck in my head... I am afraid that when I open his door, that's what I will find. And that fear paralyzes me.

Tonight I told George that I needed to tell him something but I was afraid that he would think I was absolutely crazy (because really, how normal is that thought process?) I was so hesitant in sharing with him, but I reluctantly did. I started talking and explaining the fear that paralyzes me... that puts me into a panic attack... I began to say "I don't want to open his door because what-if... what-if" as I was biting my lower lip because I didn't want to cry... I just flat couldn't get the words out... he looked at me and said "you don't need to say anything else, I feel the same way. I have the same fear." And as good (I know, maybe not the right choice of wording) as it felt to be validated, it felt that bad, knowing that he feels the same way - because it's a horrible way to feel. He explained that's why he checks on Pierce 3, 5, 10 times a night (we both check on the boys several times a night). Now with that said, his fear isn't as extensive as mine. He doesn't become so scared that he won't open the door... but he still fears the worst. He also said that it's becoming less of a big concern and more of a smaller one... his biggest worry with Pierce as of late, is him choking - we've been dealing with it much more than we'd like - let's just say, performing the Heimlich 3 times in 7 days aren't the greatest of odds.

I hugged George. I thanked him for not thinking I was crazy. My heart was hurting that he carries the same fear as I do. I thanked God for truly giving me my perfect soul mate.

I hate this fear. I hate the unknown - I am such a control freak and I feel as though know I have such little control over all of this... and I don't like it... not one tiny bit. But I do as I have to... I put my brave face on. During our crisis moments, I am grace under fire. I run on adrenaline. I do what I have to take care of my baby... to advocate on his behalf. And it's tough because to look at him, Pierce looks like your normal 17 month old - his insides just don't match his outsides. But I have my moments, where it all breaks down... and when fear creeps in like a thief in the night... I try not to let it steal anything, but clearly, sometimes it does.