Tuesday, October 18, 2016
Day -1 ... (again)
Day -1 (again)
After staying up all night with Rowan in the PICU Sunday night, getting an MRI, a lumbar puncture, Xrays, 2 bags of platelets, and CT scan, we could have slept all day...but there was too much to do in preparation for transplant, and in order to get a hold on his current health complications. So we locked hands and set out to get it all done...
Brian had labs, a gcsf shot and is peripheral blood stem cell collection all day at SCCA. Rowan ended up getting his shunt tapped, which led to the decision to emergently take him to the OR for a vp shunt revision. Then, he and I had to take an ambulance ride (with 2 emts, 2 nurses and a doctor), over to the University of Washington for Rowan's final phase of conditioning- total body irradiation. Honestly, the whole day is kind of a blur, but here is what I do know...
Brian did a great job donating cells for Rowan's second transplant. He does not need to go again tomorrow. Thank you Daddy!
Rowan's shunt surgery was successful. The proximal end of the catheter (the one that goes into his skull to drain excess csf fluid from the area around the brain) was not working. That was the cause of his enlarged ventricles. They made the incision right where the old scar was, and he was out in about an hour and a half.
The ICU doctors made the decision to keep Rowan intubated as a safety precaution since he would be being transported to UW for the TBI after the neuro surgery. It's difficult to see your child this way, but we agreed with their reasoning.
Radiation went well. Its a big scary deal...but we made it through.
The only step left is tomorrow's transplant.
While we rejoice that we made it this far, we have some pretty big hurdles to still tackle. While Rowan's shunt revision was successful, it apparently is not the only neurological change going on. As they removed the sedation to see how Rowan did when he woke up, we expected big changes in his behavior. Since we fixed the shunt, and relieved some of the csf pressure, we should have seen nearly immediate results. However, Rowan remained pretty unresponsive. He is not talking, moving his body, or responding to commands very well at all. Now, they must quickly uncover the reason, and figure out how to resolve the issue as soon as possible. As we move forward with his second transplant, this, along with the growing kidney hematoma, obviously complicates matters. It is extremely heartbreaking and difficult to understand setback after setback...but, Rowan is a fighter, and we are trusting that God has got this.
"So we fix our eyes not on what is seen, but on what is unseen!"
2 Corinthians 4:18