This past seven days brought on a whirlwind like no other. Jayden has been struggling with some aspiration issues for some time now and this past week it finally caught up to him. When we originally brought Jayden home he was doing great medically. But two things happened that seemed to create the perfect storm. The first is that the medicine that Jayden takes to help dry up his oral secretions, or drool, has lost all effect on him. Since Jayden has no swallow due to his brain trauma, whatever he does not drool out his mouth goes down into his trach and lungs. Normally since Jayden moves so much and has a great cough he seems to manage this rather well, but lately the volume has been just nuts and even him, being the mover and shaker that he is, is having trouble handling it.
Jayden did receive Botox two weeks ago but is was a fail. Sadly we have seen no results which was such a major bummer. The second issue is that some time over the winter Jayden's Fundoplucation came undone -- another really major bummer. When we would go for visits in December we would notice a small little puddle of spit up on the floor but the docs didn't seem to be worried about it. Over the past few months the small puddles have turned into much more and now we are seeing refluxed formula going down into his trach and most likely his lungs.
To make matters worse, my biggest nightmare concerning Jayden's lack of intact fundo came true -- he got a stomach bug. On Friday Jayden began to vomit full force and began to really struggle to breath since tons of puke was going down his trachea. We took him to the ER where they confirmed with xray that he does indeed have aspiration pneumonia. Thankfully we were able to bring him back home. The ENT and ER staff decided it was best to keep Jayden's trach inflated, which basically is a little balloon on the trach that kinda seals off the upper airway preventing anything from going into the lungs. With his trach inflated full time his O2 saturations are back to almost perfect, the best we have seen since bringing him home. So now we wait to hear some type of plan from his docs, which unfortunately seems to be more difficult than easy.
Then there is Miss Angela -- obviously feeling jealous of her baby brother. For the past month Angela has begun to not tolerate her feeds at night and the poor girl has been waking up in a puddle of vomit. She is not gaining weight and her hydration is not the best. So our plan was to try to place a GJ tube which would bypass her belly so she would not be exploding at night. No such luck. The team was unable to place the tube as her belly is showing no motility at all, and the pylorus, the opening at the bottom of the stomach, would not open to allow the J portion of the tube to pass through. So, instead of Angela getting her Adenoids out on Friday which was previously planned she will go to the OR on Tuesday to try to take a look at what is going on and to manually pass the tube down using a guide wire.
Phew. I'm tired how about you?
All this is crazy and it's keeping us very busy but my main point of this entire long, over detailed post was to say one thing. I can't do this on my own -- and I need to remind myself that on a daily basis. I often feel like God is just waiting, hoovering behind with this magic wand just waiting to grant me super mommie powers, but He needs me to stop, turn around and recognize his presence in order to blast me with the extra boost I so desperately need. Is it wrong to be thinking of God in a tooth fairly like form? Cause that's what I got going on in my head right now.
This week He once again reminded me that I need to stop, take a deep breath and renew my strength. Easier said than done since so many of us mommies feel the need to just keep going -- our mommie tunnel vision kicks in and we so often forget that God is just waiting for us to take a sec, recognize him and he will give us the strength we so desperately need.