"Yes Kyle?" I replied struggling to find a stronger cell phone signal in the confines of Miami Children's Hospital (MCH).
"When are you coming home?"
"Daddy, I need you to clip my fingernails."
"We will be home real soon."
True to my word, Brennan, Johely and I returned home after a short 4 day stay at our home away from home. This time, the impetus for our visit was much less urgent but important nonetheless. And, Kyle's finger nails didn't suffer from our absence.
Since we left the hospital in mid-January, Brennan had been doing fantastic. Gaining weight, eating and being a typical toddler. All the while, we fought the nose tube (NG tube for nasogastric tube). It turns out, little B was a Houdini at spitting up the tube placing us in the position of becoming NG placement home specialists. Not a duty we coveted. Alas, he needed it to satisfy his required fluid intake.
In late February, after another episode of expelling the evil NG tube, he decided he would take the requisite amount of formula by mouth only! Glory day! He was so happy without the tube and he eagerly consumed the proper amount of formula and his bloodwork results were great!
One early March day he awoke from a nap and decided not to eat any more. Back in with the NG tube. But that was a supreme struggle to keep it in longer than 24 hours. In the ensuing days, his intake decreased and his general demeanor was not the same.
After talking to Dr. P and doing bloodwork locally in West Palm, which was not very good, we decided on a trip to MCH for some IV fluids and to discuss the possibility of the placement of a G-tube; a direct access to the stomach and...another surgery. Not something we were so inclined to concede.
However, without the required volume the only alternative would be a form of dialysis. After discussing further with Dr. P the advantages we decided to undergo the procedure. Three short days later, we were home and B was recovering nicely and hitting his target intake.
With the G-tube, we can do a bolus or a large quantity feeding in a short period of time through the tube along with medication. In early May the tube will be replaced by a MICKEY or a low profile plug type implement. He can swim, go to the beach, run around or sit on brother's head! There is a reduced possibility for infection with g-tube than with the dialysis catheter he had before.
Things are starting to become normal again. Kyle is almost done with school this year. Brennan is tearing up the house and harassing big brother. Work is keeping Mom and Dad busy.
We met with the transplant team in April and things are moving forward as we accumulate time on the list, the longer on the list for a baby the higher the priority. We are standing on "G" waiting for "O" for the transplant call. http://www.miamiherald.com/2011/05/04/2201358/child-ready-to-go-home-after-receiving.html
The ironic thing with Brennan is that he looks healthy, plump and very, very active so when we see a new doctor for the first time, we are met with skeptical queries. After detailing everything he has been through, they quickly understand.
Thanks again for all your prayers, well wishes and support! I know it has been some time since the last blog but I will now update the first week of every month. The less I need to write the better the news will be and I will fill the space with pictures!
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