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.
Reading with Grandma in the sunroom at the farm
Noah's with his only Great-Grandma and Great-Grandpa
Mr. and Mrs. Andrew and Anika!
Noah and mommy
M and Noah (one sharing, the other taking the duckie :-)
Jared and his brother Joel (one of his brothers!)
Noah's with his only Great-Grandma and Great-Grandpa
Mr. and Mrs. Andrew and Anika!
Noah and mommy
M and Noah (one sharing, the other taking the duckie :-)
Jared and his brother Joel (one of his brothers!)
Sounds like a good time was had by all in Ontario! Glad to hear you're managing everything well. Hoping and praying for you continually that things will improve with Noah and that he'll start taking food in orally.
ReplyDeleteA very nice blog post once again. I'm glad that there wasn't a tube change. Maybe it's just too early for another change.
ReplyDeleteI'm happy to hear that you didn't proceed with the tube change if you weren't ready. I know exactly what you are going though - our daughter Allie doesn't have a diagnosis and she is g-tube fed. It's frustrating and sometimes it feels like there is no end in site - but hang in there. My daughter got her peg tube removed and her mic-key button put in in March 2010. Children's Hospital of Wisconsin wouldn't sedate Allie for the procedure because it only takes about 5 minutes. The procedure is very painful when they pull the peg tube out and I HIGHLY recommend you have your little one sedated if possible. The 5 minute procedure traumatized Allie and she hasn't been the same since. She is now very protective of her button and fights feedings everyday. She is now in mental health therapy for post traumatic stress because of the procedure. I know the procedure to get the peg removed and mic-key button put in doesn't effect every kid like it did for Allie but I can honestly say that our experience was awful. So, if the hospital you go to will sedate him or give him versat, I recommend it.
ReplyDeleteI'm happy to hear that Noah is doing well - I'll keep praying for all of you.
Jodi Berndt
http://alliesabnormalappetite.blogspot.com/
wow i have read through the last few months of posts and my heart goes out to your family. we are dealing with many of the same things right now...our 3 month old is undiagnosed (he has a genetic deletion but it's the same deletion I found out I have and it doesn't affect me the same way at all so they think it must be something else), he had severe GERD, an abnormally small stomach (made smaller by a Gtube placement and fundo), severe retching (he also has a seizure disorder, dandy walker variant, malrotation (repaired), and the docs think he may not be able to see, or at least well enough to function normally :( His biggest troubles right now besides seizures are the retches and congestion that seem to be related. We are going to try the neocate if there's any chance it could be allergic (his big brother has milk allergies but mason doesn't have the same symtoms exactly; instead of eczema his eyes tear up, he hiccups, sneezes and retches with position changes..did Noah do these "vagal-isms" after his fundo, and did it eventually stop? i have read article after article praying this will get better...but i am not finding much except for "having the fundo undone." ?? at which point the child completely reversed and started eating normally again. i cannot imagine putting my child thru that type of surgery again but if it really is the only end, I dont know which is worse...to have the reversal and go back to reflux (although they say even neurologically impaired kiddos get better after age 2 on the reflux) or to keep he fundo and retch on and on with no end in sight. I will be praying for your little boy, that he will get better from all these issues and that God will give you extra special strength in the meantime. Mason's story is at www.masonjosias.blogspot.com
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