So… this happened last night March 21, 2018
My little soldier 💙 Things can change in a flash ~ One minute you are all relaxing together and enjoying the evening and the next minute in a flash things can totally change.
We all see Cami as this strong little warrior and she is, but it’s important to remember too that she fights battles none of us really understand at times and it’s a matter of connecting the dots and following her new patterns.
So… Cami just had what Im going to call well hmm 🤔 a Spell!
She was in the middle of moving towards me on her knees (perfectly normal) and once she made it over to me she was a little flushed, and seemingly had a hard time speaking as if she were choking and or as if she were dry heaving, like she was going to vomit. My thoughts begin to race… I’m running down a pre-made checklist thats etched in my noggin 🧠 OBSERVE OBSERVE OBSERVE & ASSESS YOUR PATIENT 🧐
1… Is she breathing… why is she struggling… is she choking?
2… Did anything seem to trigger the attack?
3… Look at Camis condition?etc… you get the point!!
Once my son Hunter and I basically determine that we don’t need to call 911, (haha and yes after the panic of going back and forth lol) because it was that bad. At this point she’s dramatically laying in my arms kinda weak, so I quickly run her upstairs to her PICU/room😻 I put her pulseox on to check her heart rate and O2 level she was saturating on point at 💯 and honestly I can’t remember what her hr was ugh 😑 really kicking myself for that. Odds are it was likely a little low, but at this point she was totally perking up! I also immediately put her on the Farrell Valve Bag it attaches to Cambria’s G-Tube. This bag helps get rid of extra air from the stomach and venting prevents the stomach from becoming swollen, hard, or painful because of the build up of air etc. furthermore I listened to her bowels, because my thoughts are could it be the following; Vasovagal syncope Also known as the common faint, vasovagal syncope refers to faints caused by excessive stimulation of the vagus nerve. Cami’s Vagal nerve was severally damaged, but we’ve seen a significant healing so… however all things add up because this week we’ve been battling her Gastroparesis 💚 it’s a “beast” and not a lot of people understand what that even means 😯 so people offer a lot of incorrect feedback or advise. Which sadly can cause a lot of painful problems or situations for Cami and for people like her. Anyhow, not to be gross, but for six days Cami didn’t have a tata 💩, but the day before this started she had a total of 7 blow outs umm a total clean out!! Now that’s a lot, so I haven’t been all that concerned, but I’ve definitely been working with her, her nurses and her GI Dr for a plan of action etc. today she had 3 tata’s 💩 SO… this is a good thing.
However, our body’s are tricky and can cause all kinds of weird issues especially when you bring in anything neurological, spinal cord injury, paralysis just to name a few. Certainly at this point I begin to think her distention is playing a roll (although distention is minimal) in this though I think her bowels or stomach is perhaps pressing on nerves causing her to want to pass out. I’m tracing back the last months events in my mind and she’s had 3 episodes like this. Episode ONE, (February 21st)
she was standing in her KAFO and AFO (leg braces) and she did this dry heave motion so I grabbed her right away and same type of pattern as tonight she was breathless and a little weak etc. Episode TWO, I wasn’t in the room with her but my son was and when I approached her she appeared to be choking, (on a gummy bear) so naturally I did the baby Heimlich maneuver and she reacted the same way, became very weak, but quickly got better.
And now!! Episode THREE, I see a pattern same type of scenario but no food in her mouth. My senses are heightened and I’m trying to process everything. When your child lay limp in your arms whether that be for seconds or minutes it is an overwhelming sense of helplessness and quite frightening ~ a feeling no parent wants to endure, but we have to Lace Up our Boot Straps and Soldier On!!!
Idk friends & loved ones but I’m gonna get her seen just as soon as possible, so we can make certain we protect her healing and most important keep her moving in the right direction. It could be something… It could be nothing… 110% #CamiStrong ~ I kindly ask you for prayers over Cambria 🙏🏼😻😽
You can observe a lot just by watching – Yogi Berra