July 20th

Truly the dog days of Summer from the Lou:
Will has been admitted back to the the hospital during the hottest weekend of the year. His lungs are great and from a pulmonary standpoint post transplant, he remains on tract for recovery.

However, his nausea and vomiting is still uncontrollable. He’s lost a fair amount of weight and the team is being aggressive rather to find a solution. It appears with the weight loss, the artery that supplies blood flow to the stomach (SMA) has lost its “cushion” and is now compressing the stomach in such a way that causes the path to become extremely narrow but different from a true blockage.

On Monday, GI will recommend to switch his g-tube, a feeding tube that he has had for years used primarily overnight for additional caloric intake and to sustain weight, to a different type called a g-j tube. This adds another tube directly into the jejunum making it possible for nutrition to be absorbed at a better rate. After weight is recovered, he can navigate back towards a normal diet and reverting to using the g-j tube as necessary.

It is also common after transplant to need some adjustment of anti fungal and immunosuppressive drug therapies to reduce the constant nausea and vomiting especially within the first six months.

Although the surgeon and Transplant Team forewarned that this could happen our mental focus was on the transplant process itself. Neither of us expected this setback. Will is being challenged right now but remains optimistic. The beauty of new lungs have provided an advantage that was always missing. #Life After Lungs.

August 4th,

Will has suffered ” the one step forward, two steps back” most of this admission. One anti-fungal drug in particular could not be processed and led to a deeper discovery (coming on the eleventh day) of a blood clot in the right hepatic vein of the liver. This congestion caused inflammation of both liver and gallbladder, brought on acute confusion, vision distortion, and on going pain in his abdomen which prevented supplemental feeding through theneewly placed g-j-tube to take the burden off of meeting nutrition goals. The GI team was initially optimistic in treating with a blood thinner but has taken the stance to be more aggressive as some of the blood work continues to trend in the wrong direction. Tomorrow, an attempt will be made to either ” bust through” the clot or to bypass the clot by placing a shunt around the area. These efforts should relieve the pressure and reduce the liver back to a functional manner. After that, business as scheduled will resume on Tuesday with the highlighted 60 DAY BRONCH.

The. Transplant team has been supportive and allowed Will and I a few hour pass both days this weekend. It is challenging to taste the good life and then return to the real life while sorting through a mental balance. I am hoping the tide shifts and we can put the coming days behind us stowed away on the bookshelf to reference at a later time if needed.