Parker has been doing well since his surgery.
On Thursday, the day after the surgery, they moved him from the step-down unit to the general neuro-surgery ward.
He is very responsive and smiles much more frequently. Slowly we are seeing parts of the old Parker shining through and it does our heart good.
The interns came by early in the afternoon on Thursday and said they were very happy with the results of the surgery and the CT scan (that they had done that morning) showed everything in its right place and that the shunt was working properly and the liquid was draining from the ventricles. Importantly, the subdural liquid was not increasing which was one of the main concerns we had with the surgery.
Later that day Dr. Puget came by and apologized for not having been able to come by previously. She was uncharacteristically positive as well. She indicated the previous evening's vomiting was not surprising to her given the changes in the pressure in the brain. She did respond to one of our questions saying that this shunt was permanent but said from her perspective that Parker should have no counter-indications from pursuing a completely normal life. We inquired about traveling to the US this summer and she said absolutely no problem for her-- they have neuro-surgeons there in case something went wrong but for her there would be little reason to worry.
In the initial scans and MRIs there was evidence of multiple small lesions on the brain and we asked whether the more recent diagnostics had shown how these were progressing. Dr. Puget said that she was not seeing anything like this anymore. For her she thought there was a possibility of some speech and developmental delays but not anything that wouldn't resolve itself. This was very good news for us as we have somewhat been dreading the what elses there might be. We are still cautious but we are looking forward to meeting with the Neurologist next week to hopefully confirm this assessment.
She said she would like to keep him in the hospital until Monday just to see how the scar heals but for the first time ever at Necker, someone gave us more than 24 hours notice of when we would be leaving. Renee had mentioned earlier in the conversation that it was very reassuring to see so many neuro-surgeons smiling. As Dr Puget left the room she stopped and came back and told Renee that there were two very different paths that Parker could have taken, they were all very happy he didn't take that other path.
Our next step is dealing with the deafness. Between now and the 15th of May when he is scheduled for the cochlear implants Parker has 8 different appointments with a variety of different specialists related to his hearing. Renee dropped the MRI off to Dr Couloigner and got a chance to speak with him briefly. Allegedly there is still a significant debate concerning whether to do one implant or two and we are waiting to see what the result of that debate is. On Monday his hearing aids should be ready so we can see if that provides any improvement in the interim.
Friday Parker was again in good form and the interns were hopeful they could convince Dr. Puget to allow an earlier release, but given there is currently ample bed space in Neurosurgery, Dr. Puget said today she preferred to have him stay until Monday morning as originally planned.
The girls visited him on Friday evening and he was beaming-- as were they. Hannah just wanted to hold him, Axelle even spontaneously announced that she liked Parker. It was Parker and Penelope's 10 month birthday on Friday-- this was the first time that we had brought Penelope to see Parker in the hospital. They still look nothing alike but the both have two new teeth.
Saturday was a typical slow Saturday in the hospital. Outside of the visit by Dr. Puget in the morning very little in terms of medical care was done. This morning his head bandage came off and we had hoped that they would leave it off as in the previous surgeries they did not require the full helmet after the second day. Today they decided to replace it which was bothersome to both Parker and his parents. I left in the early afternoon for about two hours while he was sleeping and upon my return the nurses were putting another head bandage on as he had awoken very upset and somehow managed to pull off the bandage. This time they used glue to fix it better. He certainly seems to have regained some strength in both his arms and legs. In addition to getting his head bandage off he is kicking quite vigorously with both feet. One of the reasons I felt compelled to go home in the afternoon was that he had successfully kicked a good portion of his lunch onto my shirt. It is encouraging to see physical activity from him -- it will be good to have him out of the hospital where he can develop this a bit more.
We are feeling a strong sense of God's love for us. This has been manifest both directly, through a simple reassurance that he is there watching over us coupled with a feeling of joy that has accompanied Parker's recent progress, and indirectly through so many people continuing to want to help us. I brought our four girls back to Paris from Spain yesterday. For the previous five days they had been staying with their Aunt Katy near Malaga as we decided that for the girls and for us it would be better if we could just fully focus on Parker. We also thought it easier for Katy and more enjoyable for the girls as there were built-in activities at the place we were staying in Spain. So Katy left her 13, 10, 8 and 5-year-old boys in Utah with my brother, Michael, and flew to Spain to take watch of our four little girls by herself. When I called her yesterday to let her know we made it back to Paris and thank her for coming she thanked me for letting her feel like she was helping out. I have known Katy for 16 years and adding the traditional "in-law" to "Sister" seems at best inappropriate.
It still amazes me that there are people like this, people who are willing to rearrange the hectic schedules of their own lives to unselfishly lend a hand and then express gratitude for having been able to do so. While this has taken the form of some people swapping their frequent flyer miles for a trip to watch our girls, sometimes it has been expressed by someone who wakes up at 2AM to call us in our time zone with a particular impression or feeling which has enabled us to have a sense of hope for a brighter day. I am not sure that I am that kind of person. I don't think I am necessarily unkind or particularly uncharitable but for whatever reason in the past few years I don't know that I have done an adequate job in rendering service to my fellow man-- to try and lessen someone else's load without having an ulterior motive or being compelled by guilt. Oddly, I remember the feeling of joy in service, freely giving of time and talents and not really thinking whether or not you were rewarded or even appreciated. Somehow, as time became an increasingly precious commodity, it seems that I had begun to jealously hoard this for myself and squander this on less meaningful pursuits which provided amusement, but not true happiness. Gratefully, there are so many others who prioritize service above other pursuits. As such, we have greatly benefited from these services and continue to do so.
