Tube Tales

Hello!

Our thanks for all the wonderful feedback from our last blog. Jared tells me we got 1, 1oo hits last month - that seems crazy to me but shows how many peeps care about Noah! We've felt pretty run down this last week, so it was of real encouragement to us.

First up......Noah of course!

Noah was supposed to have a mickey (skin level button type g-tube) inserted this past Wednesday. We were mighty nervous about the removal of the PEG (his current style of tube) but also excited for the prospect of our monkey having just a flush button on his tummy. When we arrived at clinic, I quickly felt overwhelmed throughout the teaching. Noah still retches often, and does so with vigor. With a mickey, we would have to change his feeding line out for a venting line. By the time we do that, we may have missed the retch and the chance to vent. Not releasing air puts the fundoplication surgery at risk.

We must have looked overwhelmed but at that point the nurse asked how things had been going lately. Now, for the most part I consider us to be realistic about Noah, using respite to ease the strain of his medical needs by getting out and taking breaks, we are doing pretty well in the sleep department and even pregnancy has been manageable. But at that moment, I looked at Jared and tears began to pour out of my eyes. We both said "not great." Now, let me clarify. Noah is GREAT. Noah is developing normally. Noah is slowly gaining weight. Noah is a generally happy and smiling little guy. Noah likes a good joke, usually meaning his parents acting in a ridiculous manner. Noah is making progress on taking faster feeds. BUT Noah is 100% tube dependent. Unable and unwilling to eat or drink much by mouth despite several attempts a day with all kinds of different foods. Noah retches, day and night. He has no diagnosis. All of "this" is what makes us say not great. It is hard. It doesn't seem to change or improve all that much. We know we have it so much better than many but in that particular setting, we both felt weary.

At that point, Dr. Wong arrived and after being briefed by the nurse said he could change the tube but we would probably come back in a week wanting the PEG put back in. Accordingly, we decided then and there to leave the current tube in. Thankfully it isn't showing any sign of wear (cracks, leaking etc.) so it can continue to work for Noah.

And now...the main event...ANIKA AND ANDREW'S WEDDING

Congratulations to Auntie Anika and Uncle Andrew who had a most spectacular wedding! We had a great visit, sharing in family time, watching M and Noah (the cousins) play with each other. M shared all her toys while Noah wouldn't give them back! Haha. It was all so special. Thank you again, Oma, for putting up with us and taking such fine care of Noah. Thanks too for having us at the farm, Grandpa and Grandma.

We wish the newlyweds much happiness and blessings for their life together.