Wednesday, May 2, 2012

{Renewing my Strength}

untitled-22

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.

untitled-21

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.


untitled-20

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.

untitled-24

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?


untitled-23

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.  

untitled-25

untitled-26

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.




4 comments:

Xiomara Montes said...

There are times when I feel I can not more, but I thank God that I have Him as part of my life, He is who gives me daily strength to continue. I identify with you and admire you as a mother and wife. I pray to God you every day to help you and give you strength and peace to face each new challenge in the life of your children and as a family. God bless you.

Jessabells said...

Wow, what a week. You are doing a great job though. Those children are so blessed to have you as their mother. God gives us what we can handle, no more, no less. It is wonderful though it all you are able to stop and recognize that God is by your side giving you the strength that you need to help your children through difficult times. Many blessings to you and your family. Hope everything goes well on Tuesday with Angela.

Alyssa said...

Prayers from Oregon are flooding my eyes. I found you on IG and have been on your blog for the last hour soaking it all in. I'm a mommy to two babies in Heaven a beautiful biological daughter and two beautiful brothers through adoption... all in the last 3 years. My head spins, but my heart is so full after reading your stories. You will not know how your stories have touched my heart tonight. You are the extraordinary inside the ordinary.

Kyla said...

Good luck today!

Have you guys tried a prokinetic or different formula to see if that would help? My daughter was having a lot of trouble tolerating her Pediasure (which she has been on for years without issue) this year and we put her on Augmentin and switched to Elecare Jr and it made a huge difference in her motility.