10/03/2025
Hey everybody, just wanted to give a quick update on Ryan. The live I did last week discussed his transfer over to Carolina‘s Medical Center in downtown Charlotte and how they had to externalize his brain shunt and place a chest tube to get rid of all of the extra spinal fluid that has been draining in his lung. The hope was to have that tube for a couple of days, but unfortunately, he still has it. All the procedures he has had with that lung over the last month along with the excessive fluid I think was just too much for his lung to handle. He developed a partially collapsed lung as a result, so the tube has had to remain in place. He has regular chest x-rays to monitor the amount of air in his lung. The doctor did decide to do a water seal today, which is a step towards removal. He will have another X-ray tomorrow to know whether or not it is safe to remove the chest tube. Also, unfortunately, they have not been able to re-internalize the shunt drain yet. It can definitely never go in the lung again, but I believe we are looking at the abdomen, which is where it was initially placed 3 years ago. The requirement is Ryan needs to be 48 hours fever free before they will consider that. We were actually on a really good track and had hit 48 hours until earlier today. He ran the highest fever he’s had yet of 102.9. His white blood count skyrocketed last week, but it is back down to almost normal now. Just super strange. We also got some unexpected news from the doctor yesterday evening. The cultures from all of the spinal fluid have been clear and not growing anything. The last thing we expected was something to randomly show up. But the lab contacted his doctor to let them know that Staph had shown up in the sample of his cerebral spinal fluid. I can’t begin to understand how that happened but just to make sure that this is not a false positive and that the sample was accidentally contaminated by someone else in the testing process, they collected a new sample of the fluid last night and now we wait for those results. Help us pray that this was just a fluke and a false positive and that he does not have Staph/ MRSA in his brain shunt. We still don’t understand why he would be having such a high fever and also a decline in neurological status which warranted another head CT yesterday. He has been responding pretty well the last few days which was quite the turnaround from the last month we spent in Pineville. But yesterday he started to stop responding again during his neurological exams. Fortunately, the CT does not show anything new. No additional swelling or signs of a stroke. So, we just continue to wait for right now. Last week’s culture did show pseudomonas in his sputum again, which could also be colonized, but they started him back on antibiotics just to be safe. They sent off several new cultures today. They did remove the indwelling catheter and went back to an external catheter to minimize the risk of infection for now while he’s in the hospital. He had a very large blood clot from that, but it seems that has resolved. I am home for a couple days to be with our kids. It’s birthday month for the girls. We should be planning a birthday celebration and doing all those fun things in preparation but we can’t. Please help us pray that miraculous turnarounds happen in the next few days so Ryan can get better and get home. My kids absolutely hate us being apart, and the last thing I want is for them to have to spend their birthday without all of us at home together. The exhaustion is real. Especially for Ryan. 43 days in the hospital. I know he wants to be home so incredibly bad. 💔 It breaks my heart. Thank you for praying and for all you are doing for us!❤️