1.6.11 - My love / hate relationship...

I enjoy looking back through my blog, seeing where we were at one year ago.  It seems appropriate that last year it seems the topic of discussion was very similar to what today's consensus was on Liam's recovery...the tube.

Oh, my love/hate relationship with Liam's g-tube.  I am SO thankful everyday that he has it, but at the same time, I really REALLY want Liam to just be able to be normal is the area of eating...to be able to feed him what we are eating, have him enjoy mealtime, to see his face light up when he eats his first piece of cake or a cookie...It's been a long road with feeding, and after my impromptu appointment with our pulmonologist today, we are temporarily back to square one. 

The doctors recommendation reinforced our suspicions and our plan of action.  So, Liam is NPO (nothing per oral) and on total tube feeds again for the next couple weeks. As much as I didn't like to hear this, I just want him to be safe, especially given he already has aspiration risks due to his paralyzed vocal cord.  Given some recent choking episodes after eating his usually-tolerated-fine foods, we suspected something in his airway has changed or has not healed from surgery yet.  The pulmonologist said its very common for children to endure some temporary dysfunction/weakening of the larnyx after surgery in the chest, which could definitely be causing his symptoms.  However, the good news is that Liam's lungs were clear, oxygen levels were in the normal range, and no fever to speak of.  We are to have another swallow study done between 10-15 days from now (which is not a huge window, given how long it usually takes to schedule one!) so we do not go too long without oral feedings which might cause other feeding issues...UGH!  If the swallow study is significantly different that the one he had back in August, then we will have a scope done to see what is causing the problem.

I must say, the tube feedings are getting a little trickier now that Liam is older and wiser! Ha!  He definitely knows he is not supposed to play with his tube, and of course he does a LOT because he knows he shouldn't.  Also, he has to be sitting quietly for an hour for each feeding or he will make himself sick...The nap nanny has been our best friend for so long for this reason, but Liam is quickly growing out of it's restraints, and doesn't quite have the attention span to sit for an hour +...3 times a day (thankfully we feed him twice while he is sleeping, 3 times if he naps during one in the daytime!).  I trialed feeding him sitting up in the wagon today, and it seemed to work, I just need to get the pump mobile so hopefully we can go for some walks.

On the homefront, we are all doing well adjusting to the new routine.  I actually cooked my first home cooked meal tonight since I can remember!  I really miss having time to be a housewife =)  I am thoroughly enjoying all of my new responsibilities!  I am also amazed at what a little chatter box we have on our hands...he is picking up on words so fast...this morning we were watching Mickey Mouse Clubhouse in bed, and Liam blurted out (on cue with the show) "Oh toodles!"  I shot up from my pillow and looked at him, like where did THAT come from??  He just smiled and giggled.  I couldn't get him to say it again, but maybe tomorrow morning...