Ian’s progress seem to be yo-yo-ing back an forth lately. In good Ian fashion, he does well on a routine or treatment for about 4-5 days and then resorts back to his retching and gagging and coughing. Inconveniently, it seems to always reach to edge during the weekends.
This morning he woke himself up and had 3 major episodes, all with spit ups. The spit ups seem to be getting to be more prevalent. CHOP told us that this is overall a good thing because it means the Nissen isn’t too tight; however, with him retching so much, it means more spitting up than what should be happening.
He is still on the same routine and recipe for food and is being treated for blood sugar instabilities. Overall, we are still at an improvement from where we were before those treatments. Five steps forward and three steps back... I suppose is still two steps forward. We are continuing the Benadryl, but he may have acquired a tolerance to that. he has also gained a little weight, so he may have outgrown the dosage.
His post-prandial hypoglycemia is being treated with microlipid and 2 T of corn starch in his “meals.” They can add a little more for this treatment, but they may also want to increase or change some medications. The surgeon said they only use the medications when they have to, and they may decide to try a few other things first.
I have sent an email to CHOP this morning to hear what we will do next. Most of Ian’s am retching episodes seem to be either triggered or exacerbated by mucous. He seems to only be able to “fix” this by spitting it up. His vagus nerve doesn’t seem to be “eased” enough. He also has trouble during the daytime, but mornings are worse.
Last night, we tried VICKS Vaporub and the vaporizer with the Vaposteam to try and help keep him “open” more easily, but it did not help. It actually may have made it worse because everything was loose, and moving around more. The Benadryl should help dry things up, but it isn’t doing enough of that right now.
I am curious to see if any nerve medications will help Ian, but I’m not sure they will want to jump to those yet, or if they would do anything to ease the vagus nerve during mucous exacerbation...
We began feeding therapy again on Friday and between food play and “food kisses,” we are beginning to expose him again. We are presenting opportunities everyday, multiple times a day, for him to play with and touch foods. It is amazing how incredibly smart he is that he knows every single food from a toy, even if he has never been exposed to that food before. All toys will go in the mouth, and no food will... smart little cookie!
We continue to play with the Nuk brushes, textured spoons, and battery operated vibrating toothbrushes. He likes the toothbrush... good boy! Last night, we used strawberry preserves and smeared them all over the tray and the spoons and brushes. He did let some of it get into his mouth with the brush and from my finger. Most of it was spit back out, but he still had the exposure. Later on, when we went to put in him into the bath, once I removed the preserves from his cheek, he had a large red rash underneath. I suppose this is his way of telling us he is allergic to strawberries! We will now have to keep record of this and watch it carefully. It subsided in about one hour and was a flat rash, no bumps or scratching.
He continues to be absolutely adorable and makes us smile everyday. He does not seem at all interested in the Christmas tree and doesn’t even seem to know it’s there. he seems much more interested in the laptop and electronics, as well as climbing on top of everything! SPROUT TV is still our #1 channel and Sesame Street makes multiple daily appearances in our home, alternating with Baby Einstein of course.
He did have a good report at the ped on Thursday, no infections or troubles from their end. He is now 21 pounds and is back on the growth chart for height. Proportional growth does seem to slowly being happening. With his feeding belt on and such, he does need to go up a size, but is wearing 18 months clothing in general, right where he should be.
He is all boy and is perfect in every way according to the surgeon. We are just still struggling with the food and digestion an someday it will all be gone, hopefully. Plowing through yet another day, week, month, and year... Looking back, one year ago, Ian fit into his stocking, hard to believe... 5 pounds to 21 pounds!
Please continue to pray for Ian as he perseveres and works through his challenges.