Tuesday, December 16, 2008

A very long day for Riley

Well. First of all. The Xray came back clear! Yay. But...(and there is ALWAYS a but...). Once again, Riley has defied the odds and just stumped his medical team. Particularly, his surgeon. He was pretty much speechless when he came to see us this afternoon because he was absolutely SHOCKED that there was NO blockage, no fistula, no issues he could see OTHER than some inflamed and enlarged loops of bowel. He said he was amazed and that NEVER in his career had he had a child go through what Riley did and have a leak in an anastamosis and look this good afterwards!!! So...pretty much. They don't know what to do with him! His intestines worked, and had no blockage, but they are still inflamed. that is concerning. But yet, the dye passed through great. That is good. The surgeon was pretty much just flabbergasted and didn't know WHAT to suggest doing!! The fact they aren't blocked is great, but whether it's truly ok to feed him....NOBODY but God knows. There is no magic 8 ball for these guys to ask their questions to and get the right answers.

So after conferring with the surgeon and the attending Neonatologist (who is actually the director of neonatology here), we settled upon this: They are going to do xray tomorrow and Thursday (and further on as well, but those 2 days important for the moment). If the xrays continue to look the same or improved...then THURSDAY we will feed him pedialyte. A teeny tiny tiny tiny amount. And watch. And wait. And we will start from there. EVERYONE wants Riley fed. NO one wants feeding him to harm him. When is the best time to feed him that won't harm his intestines?? NO ONE knows!!! His feeds will initally be done via the D-tube he has in his nose. I incorrectly called it a NG tube earlier. A D-tube is a tube from the nose down through the stomach and into the Duodenum. He's gonna have issues with reflux and that too will cause feedings to go slowly. He may have to keep the D-tube for awhile and some babies with severe reflux end up with G-tubes which are surgically inserted. Those are all minor issues compared to the rest for the moment though, and we will just have to see how he handles the feeds. But when I got here to see him tonight, he had a tube in each nostril and poor baby couldn't suck on his paci cause he couldn't breathe well. That was short lived though and Nurse Rachael made his (and our) day by pulling out that nasty old replogle. Here's hoping it doesn't have to go back!

Oh and it seems that the issue with him only pooping while lying on his right side isn't an intestinal issue at all. It's a stomach issue. His stomach is slow to release it's contents into his intestine and that coupled with the reflux means he tends to puke it up before dumping it into his intestines. But when lying on his right, that helps it flow into his intestines easier. the fun never ends.

Riley's stomach full of dye:


D-tube and big dilated loops of intestine:


strapped down, hanging and unhappy (3 hours he spent like this rotated all different ways):


Nasal tube mustache:

5 comments:

Anonymous said...

See some good news for a change although it's baffling, we will take it. Thank God! Hope Riley gets an extra long cuddle for this day! May you all get a good nights sleep now and look forward to better news tomrorrow...Peace!

Anonymous said...

great news, praying that Riley will continue healing.this little boy is such a fighter what a example for us all. Thank God for the miracles no matter how small the steps are they are wonderful steps. Doris

Anonymous said...

Even though some baffling news, we'll take the good news too. Happy moments, thank God. Baby Riley, may you have a better day today. Blessings, Pauline

Anonymous said...

Thanks Lindsey for sharing. I keep the prayers coming your way. My how strong all four of you are! So today here's my prayer: Heavenly Father, watch with us over Riley and by the might of your command drive away from his body all sickness and all infirmity. Be present in your goodness; comfort his family; guide his healthcare providers with wisdom and compassion through Jesus Christ our Lord Amen.

Anonymous said...

Lindsey, I guess Riley is showing his doctors, that the power of prayer, and love,of many well wishers, can work as well as medicine. He is a very strong and special little boy! I do sincerely hope the inflammation in his intestine improves shortly. Blessings to all, and thanks for the news of the new "baby steps", that Riley has taken.
Love and Hugs, Dale

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