Monday, September 14, 2009

Now what...part 2

Make sure you read the post below for important updates. This is the follow up post to that one!

So...the surgeon that has performed Riley's FOUR bowel surgeries plus 2 central line surgeries, thinks we need to take a "wait and watch" approach to this leakage. The fluid is better out than in, and its coming out. Right now, he hasn't run a fever since Thursday/early Friday morning and he looks well. Of course, he looked fantastic prior to his last surgery, which was done emergently, so we can't really go by how well Riley looks and acts. He's just tooooo tough. Something that would have a grown man doubled over in pain and calling 911, he sits and smiles through. Amazing.

Anyway, they want to wait and watch and draw some lab work on his to check his white cell counts, etc. They are leaning heavily towards the thought that this is likely content from his large intestine. It has a free end that was stitched closed, and had a metal clip put on it to help in locating it in the future. But the condition of this segment of his intestine when they went in Sept 10 was not optimal so it is highly likely that the stitches are leaking (what IS it with Riley and leaking?!?!). The content can also go downstream and come out his bottom, so it has 2 ways to leave the large intestine and there can't be THAT much in there anyway. So everyone's hope is it will leak until its all gone, and then be done. He will be VERRRRY closely monitored the next few days, and ANYTHING out of the ordinary will be treated very seriously. They are going to let him continue to eat because he is REALLY getting behind in his nutrition. And losing weight rapidly at this point. He is now down 3 pounds from when he came in. That is 3 pounds in under 2 weeks. So much for those chubby legs. The goal is to keep him off TPN and lipids. So after the surgeons talked with us, they said he can continue his clear liquids tonight and as long as that continues to do well, he can move on to formula in the morning.

So now, every diaper change is a dreaded event. How much stool is on the gauze pad covering his incision THIS time. Hopefully it will become less and less and then be gone.





he stood in his window and watched Life Flight come in for a landing


Playing in his crib and looking out the window


Looking outside at this:


Here he is gulping up some chicken broth. He LOVED it.

Photobucket

5 comments:

Anonymous said...

Hang on Lindsey, don't let that knot slip! Riley looks so cute in the picture in his crib, looking out the window, but holding that green paci on his finger. Hoping all the drainage will stop, and he will be on his way to a full recovery. Poor little guy deserves a break, as does his Mom and Dad. Hoping Riley gets to eat more, and puts his weight back on. Keeping you all in my prayers!

Hugs for sweet Riley,
Dale

Anonymous said...

Prayers are with all of you during your time of need

brad.kellie.babyc.lucy said...

Somehow I suspected that Dr. H would want to wait and see. Seems to be his way. Glad to hear that it may not be too serious and we'll be praying that with each gauze change, you see less and less poo.

The picture of him on your sholder poking his lips out is so sweet.

-Kellie

Anonymous said...

As always Lindsey, Keeping Riley in my prayers. Waiting and watching and praying the drainage will stop and Riley will gain his weight back and be on his way home soon. Love, Pauline

Anonymous said...

Lindsey, you have been a inspiration through out Rileys life, Your strength has been so unbeliveable, stay strong, pray and let it out whatever way you can, God tells us its ok to ask why, we may not understand but He's still with you,Riley is a beatiful little boy, who is cherish by many, our prayers had been and still are with you.Doris

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