Parker continued his battery of medical visits this week and we are progressing towards the next surgery with a sense of unsettled inevitability.On Monday we had our first visit to Trousseau, the hospital where the cochlear implant operation will take place. It has a different feel than Necker and seems slightly more updated. While the ENT area (surgical, consultations and patient rooms) are contained in one building, there is a significant amount of green space in the hospital complex and there is a children's play area and a well-maintained flower garden. It helped that Monday was very sunny and warm but the overall feel of the place was a little less ominous.
While at Trousseau we met with Dr. Loundon, the ENT chief there, as well as the anesthesiologist. She indicated that it was still not determined whether or not they would do one or two implants and if one which side it would be on. According to her with one implant there is a 95% chance of success "hearing", with two there is a 98% chance. We had understood that the preferred single-implant side would be the left, but Dr Loundon indicated that even though the Neurosurgeons had placed the shunt valve farther to the back of the skull than was typical, there would remain a risk of infection from the shunt that unless there was a major difference between the two sides, she would prefer implanting on the right given the reduced cranial real estate on the left.
Thursday Parker was scheduled to visit with the occupational therapist in the morning and the speech therapist in the afternoon. There was some confusion and Renee and Parker ended up missing the occupational therapist and in the process Renee lost her cell phone with all of the different doctors phone numbers with it. The people who found it decided to keep it so she has been somewhat unreachable for the last several days.
Several doctors have expressed a keen interest in Parker meeting with the occupational therapist more than the physical therapist. Prior to this it would have been difficult for me to understand what the difference is but as we understand now the physical therapist would normally ensure that the physical aspects are functioning; legs move, head held up, etc. The occupational therapist works to make sure that the brain is connecting to the body and he is picking up skills; crawling, using a spoon, playing with a ball, etc. Interestingly, the French social security system covers physical therapy but not occupational therapy (which is covered by my work insurance). We have a hard time working with him consistently to help him regain his strength as we don't know when we are pushing him too hard so tend to back off as soon as he starts to whimper. With the hearing aids as well he seems to find no joy in wearing them and putting them in seems to bother him as well. It does not help that we see very little improvement when he wears them so our motivation is limited.
We are firmly entrenched in our cycle of good days and bad days-- this week was difficult for Renee for many reasons.
Abby has been absent for the last few days as she is on a class trip to the Dordogne and her presence has been missed. She is a very energetic child who tends to bring a level of excitement to every situation. This is not always in a positive way but the energy she brings tends to dissipate the melancholy of the would-be quiet moments. We have missed that energy and its strength.
Parker started vomiting yesterday after a hearty lunch and we became instantly concerned that there was something more serious involved. We have had significant experience with sick kids but with PJ we wonder if there is something wrong with his shunt or something else we haven't had to deal with yet. I don't think we will ever quite get back to a point where a cold will just be a cold with him.
The week before us seems to be lurking in ominous shadows. We keep hoping that his hearing will spontaneously come back or we will get some definite sign that he is progressing, fearing that once we get to the actual implant surgery it isn't going to work or there will be complications. Renee is hoping for that additional miracle and has a strong amount of faith that he can still be healed.
I debate whether or not the whole concept of cochlear implants is the miracle in itself and we should be grateful for modern medicine, and then vacillate into wondering if this is my way of apologizing for my own lack of faith not being able to spare my son this surgery and its attendant permanent hardware attached to his skull.
In any case we will be happy to be past this week. It feels much too much like the waiting place and we have places to go.
