the amazing adventures of carson and kellen: Back to prayers for weight gain : )

Wednesday, April 17, 2013

Back to prayers for weight gain : )

Another update from the Clark household... First off, we are LOVING the warmer weather! The boys cannot get enough of the outdoors, however we are often limited because we live in Dexter's wind tunnel : ) The boys seem to be pretty much back to normal (in terms of health)...unfortunately, when Carson got the little 'bug' we also saw a return to his puking pattern. He is back to throwing up every day : ( So I ask for prayers for the little man...I was so hopeful that he may have turned a corner after his most recent surgery but it seems to have been short lived.

We had a follow up appointment today, with the surgeon in St. Louis that most recently revised his Gtube site. Overall, I thought the appointment was positive. The G tube site is growing excessive granulation tissue and we will be using silver nitrate to treat that with hopes of getting it to disappear. This is a fairly common problem with G-tubes or G-buttons. Preston and I were hopeful that after this surgery we could switch to a G-button (the lower profile tube) but Dr. Vane is not optimistic that it will work due to the high pressures in Carson's belly. He thinks we will have leakage issues. Dr. Vane believes Carson's stomach is NOT emptying like it should due to likely damage to the vagus nerve during the teratoma resection. Although Carson continues to gain weight overall, he is starting to lag behind his typically weight gain and is falling below the 25th percentile. As Dr. Vane reiterated today, growth is SO important right now for overall development but also brain development. SO...this leads us to our prayer request....WEIGHT GAIN!!! Dr. Vane is giving Carson a month to gain enough weight to reach the 25th percentile...this is approximately 1.5 pounds. If he does not gain enough weight, Dr. Vane will recommend having the pyloroplasty (opening the area between his stomach and small intestine) done. He says this is a very successful surgery with low risks. Of course, I do not want to have to add another surgery to his list because EVERY surgery has risks...but I ALSO want him to get proper nutrition.

Along those lines, we (I should say "I") have also been looking at a less invasive, alternative form of therapy that could assist in the emptying of his stomach and possibly improve his swallow (thanks to some insight from other family members). The issue here is that the therapist who is the most qualified and we would like to see is in Minnesota, which is a 12 hour drive. A trip like that would require ALOT of planning, coordination, time, and teamwork without knowing that this 'therapy' would actually be a fix. So, we have been praying about the best, next step to take and appreciate all your prayers too!

The boys continue to provide lots of joy and laughter every day...Kellen is Mr. Climber and loves to explore! Carson is walking more and more but still prefers to have a hand to hold. He is also continuing to taste more and more food and is trying small sips of liquid. This is an awesome improvement!!