Michael Warechowski IV

Updates on our sweet Michael

New Meds

on August 7, 2012

This picture is one that Mike took of Michael wearing daddy’s hat. Love it!!

Well, we finally had Michael’s swallow study last Thursday and the good news is that as of right now, he’s not aspirating at all. He still gets a little choked and coughs when he drinks thin liquids but they say it’s good that he coughs – he’s protecting himself from aspirating.

Feeding Michael continues to be a very big struggle. He has lost weight and is just so skinny. Those cute little chubby cheeks aren’t so chubby anymore. It makes me so sad to see him this way. Mike and I watched some old videos of Michael and I had almost forgotten how much and how well he spoke. How mobile he was. How happy he was. This is a cruel disease.
After a couple of weeks of Michael not feeling very well, we’ve decided to go ahead and add another medication; it’s time. Baclofen is supposed to relax his tight muscles. His legs are so tight – he never bends his knees and he keeps his arms bent and fists clenched up under his chin most of the time. I’ve been trying to give him massages but he won’t lay still so I have to distract him and massage him at the same time. I think he likes when I rub his legs.
As you know, his g-tube/fundo surgery is scheduled for 8/21. We will be in the hospital with him for 2-3 days. The g-tube surgery is pretty easy with very little risk. The fundoplication surgery is a little more complicated. The purpose of the fundoplication is to prevent reflux by tightening off the top of the stomach where it meets the esophagus. Because the g-tube is placed at the bottom of the stomach at an upward slant, there is the risk that when you inject the formula (or whatever else you put in there) it can go right up his esophagus and cause reflux.
I just can’t wait to get some nutrition in my baby – put some “meat” back on him. I miss those chubby cheeks.

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