Tough Little Man

We showed up at Children's this morning at 6:30am after a rough night. I was really stressed and woke up every hour or so, making sure I was following all the dietary restrictions for Noah while I prepared his feeds half awake (no formula after midnight, no breastmilk after 2am, etc). They finally took him away at 8am, and I started bawling. Just a simple straightforward procedure, but still scary for mom! Because they also did a CT scan while he was under anaesthesia, Noah wasn't done until almost 11am.

His tummy is SUPER sore, but if you know Noah, you know that he is toughin' it out. No bawling or intense screaming, just moans and groans here & there to let us know he's hurting. :( He is such a tough little guy! We want to avoid giving him morphine, and he's just on tylenol at this point. Depending on how he does tonight we'll make the decision whether or not to give him the morphine (to help him sleep if nothing else).

The g-tube doesn't look that bad. As Kyle describes it, it looks like one of the blow up holes on a raft or a floatie, that you put the plug in when you're done blowing it up. It's flush to the skin, and the cut at the surgical site is about 2cm, and there is another vertical cut right in the middle of his tummy that's about 1cm. It hurts when he kicks though because his tummy is stretching out. It will take about a week before it really feels better, and at that point we can use it. Until then, we have to continue with the stinkin' NG tube in his nose while the G-tube heals. We're so excited to have it off his face!

Dr. Perkins just came by Noah's room a little over an hour ago after reviewing the CT scan. After precise measuring (vs. the eyeballing we've been doing the past few months), on average Noah's cysts are 1/3 the size they were when he was born, meaning they've shrunk 66%! Crazy! We talked more about further treatment too, and Dr. Perkins is revisiting the idea of the schlerotherapy. Generally the OK432 (the drug they inject in to the cyst) only works on MACROcystic lms, and because Noah's have gotten so much smaller, he is on the fence between being MICROcystic and MACROcystic. So, in a few months we may try the schlerotherapy on the large cyst that sticks out front, and see how it does. It will take 3-4 injections to see if it works. At that point we can decide to use the schlerotherapy on the rest of his cysts, or we can still go ahead and remove the mass with surgery. Dr. Perkins said he wants to educate us as much as possible and then let us make the decision on the method of treatment. Which I totally respect, but that's what we pay him the big bucks for!! :) We are just very excited for the next couple years for Noah and to see the healing take place. We know God can choose to heal Noah over night. These are simply the plans we are making in case that doesn't happen.

I better head back to our room. I'll grab the camera and post pics too of our sweet little boy in recovery. Looks like we'll be heading home Sunday night if everything goes as planned!