Aerodigestive Clinic

I don't even feel like writing this. I've become so overwhelmed by all of this new medical information and all I'm behind on at home that I would much rather shut down and stop trying to deal with everything. Why bother when you're so behind that you have no hope of catching up? At least, it feels that way. And, sadly, where Judah's health is concerned, there's just no light at the end of the tunnel...no end in sight...no fix. Just more questions, more complications, more tests. Possibly more meds. Ugh. Yesterday was tough. I must say, though, that thanks to the little cleaning fairy that visited my house, a great parent/teacher conference, and dinner with best friends the day did end well. Thank You, Jesus. I know You orchestrated all of that for us.

Here's the run down from yesterday's clinic:
Feeding/Swallow Specialist - After watching Judah eat she determined that he was coughing too much, eating too loudly, and sounding too "gurgly". She talked to the docs and decided to try thickening his milk/formula. He took another 2 oz. that were thickened and the difference was immediate and amazing! No coughing, much quieter eating, seemed to go down much better. I didn't even realize he was that bad. I guess we just got used to it. Thickening is also supposed to help decrease spitting, but I haven't seen much improvement, if any, in that area yet. From now until his swallow study we need to thicken everything he eats; cereal in the formula and a special thickener for my milk.

GI Specialist - He gave us some good information about acid reflux. We got more of an education from him than anything else, but that was good. He wasn't sure that an Upper GI was necessary at this point. (That would show them the anatomy of Judah's stomach, spleen, liver, diaphragm, etc. I believe.)

Pulmonologist - This visit wasn't exactly encouraging. He was very nice, and I liked him; but the first thing he said was that he would actually use the x-rays of Judah's lungs in a text book to show what aspiration looks like. He said that doesn't mean he is aspirating, but it really looks like it. Hm. Because of that, & the severity of Judah's reflux, he & the GI dr. decided that an Upper GI was important at this time, along with the swallow study. So, if the Upper GI shows a funky (my word!) anatomy, then he will need to be put on another medication that will empty his stomach more quickly, keeping him from spitting so much. He would still stay on the Prevacid, though, to keep the acid level down. (Anyone else's mind spinning yet?) He sent us home with an inhaler to use if and when Judah gets another cough or begins having trouble breathing. [Judah officially has enough "stuff" now to take over an entire cupboard in my kitchen. Stinker.]

Dietitian - This was my favorite,because she confirmed (just like the dietitian at the CDC) that Judah is getting the calories he needs and he is a healthy weight. She recommended a multivitamin, and based on the GI's recommendation, encouraged us to have Judah weighed on their scale every couple of weeks for a little while to make sure his weight is stable. There are a lot of different factors that could effect his weight gain at this point. I get it. I don't like it, but I get it, and I'm thankful that at least they're not worried that he's not getting enough or something.

ENT specializing in aspirating - he gave us an education in the anatomy of the esophagus, larynx, vocal chords, and epiglottis that I really don't remember. We saw him last, and by that point I was having a hard time squeezing anything else into my already overloaded brain. He told us about a procedure that he would need to perform along with the pulmonologist and GI dr. if the swallow study shows that Judah is aspirating. Well, we don't know for sure that he is, so I'm not going there today.

Judah's swallow study was moved up to the 22nd, and his Upper GI is on the 15th. The next steps in this process hinge on the results of these 2 tests. I just kind of can't believe this is happening. I have a hard time wrapping my mind around the 2 diseases Judah has already been diagnosed with. Now to add all of this... An unbelievably complicated situation just got more complicated. It's like, this syndrome, this gene, this...thing, whatever it is that Judah has that caused all of this...it just went right down his middle and touched everything from head to toe. Nothing seems to be right. And how do I mesh this with my core belief that everything God does is right? Did God DO this, or did He just ALLOW it? I don't believe that He just allows babies to be created. I believe He's intimately involved in the creation of every person. His fingerprints are all over us! But did He just allow this part of Judah to happen...because pain and disease are a part of this world as a result of sin? But Judah is still created in the image of God. I don't know how to believe that God's plan, His purposes, His ways are perfect and good, and then see and experience everything with Judah that is so not good. I guess... I guess what I see and feel and experience and know to be true from my human perspective is secondary to what I know to be true about God. I have no idea how to mesh everything, but that just might not be possible given my incredibly small, finite mind. I guess regardless of what I perceive in all of this, I need to cling to my core beliefs and trust God to work everything out for His glory.

But, Lord, some answers and solutions would be nice. And a maid. I love You.