Friday Jan 9th
"........it could be a very interesting week" This is how I ended my last blog entry last Thursday. Little did I know that would be a complete understatement of how this week unfolded. As Heather wrote on Wednesday, Tyler not only had his NG tube put in on Tuesday, but also decided to add to the drama of the week by puking it up on Wednesday which prompted a trip back to the docs to have it reinserted. Well, he had so much fun doing it on Wednesday that he thought he'd do it again at 5:30 am on Thursday morning as well. We've decided that he just has a crush on the gals at the GI office and is creating reasons to go back in and see them :):) He's honing his flirtation skills early. So we pull the tube out completely, get him cleaned up and head back down to the doc's. Tyler and I spent a couple of hours getting a new tube placed and discussing the possibilities of moving to a G-tube which is the feeding tube that bypasses everything else and just goes directly into your stomach. The new NG tube that was inserted was a little bigger and weighs more at the bottom end (the end in your stomach). The hope is that this one won't be as easy to puke up.
So, home we came, in time to get ready to pack up mommy and brother and head downtown to the pulmonologist's office. This is where we received the good news......yes, you heard me.....we received good news.....and believe me we were in desperate need of some good news!!!!! The pulmonologist took them both off the oral medication they were on and.....here comes the good part.......took them off of oxygen during the day!!!! YEAH BABY!!!! No more oxygen except at night!!! It is unbelievable how much of a difference it makes. For example, I was holding Parker last night and remembered I had left the formula bottle out and needed to get it back into the fridge. I sat there trying to figure out how I would do it when I realized I could just get up and walk into the kitchen with Parker in my arms and put the formula away.....I didn't have to navigate around two fifty foot hoses or anything.....I could actually be mobile with him in my arms....it was incredible!!!! This is the jolt of good news we needed. We have just felt completely defeated for over two months. Every day we have been watching the boys take steps backwards not forward. Progress was just no where to be found. This was progress, this was positive, this was just what we needed. Today brought more throwing up by Tyler, but fortunately he has not thrown up the tube yet. He has also started gaining weight again. We're hoping the throw ups decrease and he settle in on the tube. If he does he can continue gaining weight which will only help the situation.
This morning's pediatrician appointment saw both boys getting four shots each.....ouch! Needless to say we have been nursing sore babies who now don't feel well. They are on Tylenol just cranky as can be. ".....an interesting week..." boy what an understatement. So I am officially predicting that next week will be a boring, mundane week that doesn't have any happenings other than growing thriving boys. Monday's trip to the hospital to get an upper GI series done on Tyler will probably not start the week off that way, but we can always hope can't we!!!!!