Troubling Times

Hello faithful readers. This post may be a reality check to some, but a reminder to others. Emily has SMA and her body suffers the effects of it every day. However, the issues below are not normal. Here is an email I wrote to our Doctors about our recent weeks. Often we find ourselves just not knowing what to do.   

Good day!  We are hoping to get some thoughts about Emily and a recurring problem we are having with her... blood coming out of her stomach when we burp her via her G-tube.  

  We have brought this up before and surmised that there was a ulcer type issue in her G-tube track so we have been giving her Prevacid.  Over the last week we have had a VERY difficult time with Emily having loads of air in her stomach at various times, not necessarily associated with using her BiPap.  We have been giving her gas drops for a couple of days now and it seems to be a bit better, things are still not good and she is uncomfortable.  Last weekend I heard her crying in the middle of the night and found that her stomach was severely distended and hooked her up to burp her.  She was in obvious pain and was getting very "junky" in the process.  I burped her, got everything out, and she went back to sleep.  About 15 mins later she was crying real hard again so I hooked her to burp more... then she started throwing up... I'm talking out of her mouth.  Also, the 30cc syringe that I was using to burp her was overflowing b/c of the amount of air pushing the milk out.  I got her suctioned out and burped and she went back to sleep.  This gas problem has continued through this past week and this weekend.

So, this past Friday night she was crying again and we started to vent her again, but this time a lot of air, stomach acid, and blood clots came out.  Not just a few little spots of blood, but quite a few trails of thick coagulated blood. That was all that we saw of it though. Could this have been a result of her instense gas that caused her to throw up? Could she have ripped her Nissan or something?

She doesn't have a fever, although she has had a lot of secretions and is on Omniceph as of Fri for an apparent infection.

We can't figure out what this could be.  Do we need to get some sort of scan done to see if she has an ulcer problem or something else in her stomach?  Is the various medication she is on causing acidity problems in her stomach?  I have strange stomach issues, so maybe she does too.  ??  Her stomach gas/pain causes more secretions which means she is even more susceptible to respiratory issues during this cold season, so we are hoping to figure something out so she can go back to being her happy Emily self.

Thanks for your time! :)



Grandma said…
I enjoyed reading your post, Nathan. Thanks for sharing your thoughts with all of us. Here's what I read today:

The Lord is the everlasting God, the Creator of the ends of the earth.He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary and young men stumble and fall, but those who hope in the Lord will renew their strength. They will soar on wings like eagels; they will run and not grow weary; they will walk and not be faint. Isaiah 40:28-31

Perfect for you guys, huh?

Praying, Mom