24 Jul Quick Update & Prayers
Just a quick update. I’m not sure how many of y’all are following our mini-updates on Twitter, and even if you do, the last few were kinda vague. Keegan’s GI issues have been pretty bad this week. We’re trying to stay positive and praying it is a temporary setback. Yesterday was plain awful. The special formula he’s on has for the most part kept his diarrhea from coming back as terribly as it was last winter, but we’re about as close as he can be to that at the moment – lots of volume, lots of mucous, really irritated bottom, some blood, etc. Yesterday afternoon, he had an accident like he hasn’t had in a very, very long time. It was everywhere, and I mean everywhere when I went to get him up from his nap. Head to toe. Literally. Add to that the disturbances in his sleeping pattern, and I’ve been pretty darn anxious the last week or so. Terrified as to where this appears to be heading.
We already had an appointment with our GI doctor yesterday afternoon. The problem with not knowing what is exactly wrong with Keegan’s intestines is that you also don’t know why it might get better or worse. The treatment we put him on in Boston was completely a guess; neither the doctors here or there have any reason why it seemed to be working for awhile. The best guess we can make is that Keegan acts most similarly to a child with not enough length of intestines (called “short gut”), and the oral antibiotic he’s been on perhaps helped keep the bacteria in his gut in check. We haven’t made many changes to his routine lately, except that he’s begun to eat a bit more of the crackers and puffs he was already eating. This is due to us shortening his tube feeds, making him just a bit hungrier at dinner time. The GI doctor could only guess that Keegan’s intestines said “Enough! Can’t take it anymore!” This happens often with short guts; you have to progress very, very slowly, and still you may have setbacks. We’ve decided to cut one of his meds, leave everything else the same, and reevaluate in a week. If he continues to get worse or spikes a fever or begins vomiting again, then we’ll take additional steps.
SO, needless to say, we’re a little on edge this weekend. I am still waiting on word from our immunologist about the plan for the winter, but it is sounding like starting preventative antibiotics orally and IVIG for the winter. More when we know more!
In addition to praying with us that Keegan begins to start improving, could I please ask of you to continue to pray for our friend, Hannah? She seemed to be doing better and was scheduled to be discharged today. However, she began to lose a lot of blood in her stool and will need a blood transfusion and colonoscopy to determine what’s wrong. I know this sweet family would appreciate all the prayers they can get right now.
I continue to hold on to the promise that the Lord’s power is made perfect in our weakness. When we start to despair over the direction Keegan’s health takes or the battles of our dear friends, I know that if I let Him (isn’t that the key here? Letting Jesus into our hearts, into our lives, giving up the control that we so desperately cling to?), the Lord will show me what He wants to do in our lives, the miracles of which He is capable. Sometimes, I have to remind myself that even things that seem so small – a smile from Carter, the funny antics of Miss Avery, Hannah’s attitude and fight, Nate’s strength and giggle, Keegan’s funny faces that make us fall out laughing – those “small” things are immense miracles in these children’s lives!! He knows every moment of this journey and is not surprised by it. His grace is enough for us…even if we have to take it one day at a time. Thank you for supporting us and praying with us as we trust in Him on this road.