Parker had his ventricular shunt surgery today and is now resting.
We checked him in yesterday at 3 PM and except for the blood draw and the chance to take his vitals, there was very little else that we did that required a stay at the hospital. The anesthetist did check him and noted a slight stuffiness in his sinuses but said that unless this developed into his lungs the surgery would go forward.
Dr Puget also came by and spoke with us briefly about the procedure. She indicated that the fluid in the ventricles had been increasing significantly and the hydrocephalus would likely increase without the shunt. She did indicate that the subdural liquid was very minimal but cautioned that part of the reason for this might be the ventricle pressure forcing the liquid from the subdural. Once this pressure is released they will continue to monitor the subdura to see if this starts producing liquid again and, possibly, replace the subdural shunt.
Dr. Puget did indicate that the new shunt would not necessarily preclude bilateral cochlear implants and had discussed with Dr. Couloigner concerning this.
Despite all of his internal issues, Parker was happy and playful most of the day and continued to blow his lips as if he were playing the trombone. Sometimes when we would smile at him, he would coyly turn his head away with his own grin -- this was something he used to do quite a bit and we were encouraged that he was remembering some of his old habits. He still does not want to sit up and his head wobbles around when we put him upright, he does not immediately cry though.
We came back to the hospital this morning just before 5AM as this was the last chance he would have to eat before the surgery which was scheduled for 11:30 AM. We all slept most of the morning and they finally came to take him to the operating bloc at 1:30 PM. Two hours later he was in the recovery room still sleeping and with a mask on for a breathing treatment. They indicated that this was only because of his congestion and that the surgery went well. The anesthesiologist also spoke to us in the recovery room and said that there was a significant amount of pressure in the cranium and it was good that they placed the shunt when they did. He also told us Dr. Couloigner came at the end of the procedure and implanted tubes into the ears to drain them in preparation for the cochlear implant surgery-- that saves us one surgery and another trip to the recovery room..
He was significantly more drowsy this time in the recovery room. The previous times he was shaking his head, flailing his arms and crying rather constantly, this time he remained almost asleep for most of the two hours we spent in the recovery room. He also needed to have the oxygen on him more often as when he would doze off his oxygenation level would drop down. The nurses were not overly concerned and subscribe this to the congestion.
He does not move his head at all, likely due to the pain and the restrictive head bandage. He was not moving his arms much either but part of this was due to the left one being bandaged to keep his iv in and the right one having a blood pressure monitor attached to it. He eventually started raising his legs in the air and pawing at them with his encumbered hands.
In his room he wakes up in occasional fits of pain and discomfort but he has continued to perform his lip-blowing trick and has even managed to smile once or twice. He is frustrated by all the bandages and wires and that his currently dominant left hand cannot grasp his pacifier. Mostly he just continues to rest although around 9:30PM he started vomiting which is a common side effect of the anesthesia.
Today marks two months to the day since we first checked into Necker. From our room in neurosurgery we have a view of ICU and can see the windows of room number 2, the waiting room and the bad news room. Yet even those memories start to fade as we see the state he is in now and imagine where he was then.
This surgery was particularly difficult for us to sign up for as we could not see any clinical signs of the problem. There were no seizures or tubes sticking out and we kept hoping he would just get better. On Monday when they did the CT scan, even to us it was clear that the problem had not gone away-- yet we hoped that we would not have to put this more permanent shunt in, always living in that shadow of fear that it could get infected, or blocked, or somehow make it's way into the intestinal tract again.
It is also hard to take an innocent and unknowing child to that process. Friday will mark ten months since his birth so even if he was capable of verbal communication there is no obvious way to explain it to him. Our choice was either to be dour and anxious, and somehow transmit a level of concern to him or just take advantage of the time we had with him to do a little home physical therapy and play with him. We chose the latter but there is a sharp and deep sense of guilt when you go from one moment making "kissy-faces" with your baby to the next handing him over to a relative stranger to be carried of into the operating room as you pray he does not feel that sense of betrayal that you feel. Today, in an act which I considered humanity, the tech who took him into the operating bloc did not put him in a gurney but cradled him his arms.
I have stopped asking why each new step occurs and just ask questions to make sure that it is an appropriate course of action and then pursue. Renee is getting to that point as well. We still have our hopes; we hope (beyond reason) that maybe the ventricle fluid was somehow pushing on the auditory nerve and he will hear naturally again before he has to have the cochlear implants, we hope that the subdural fluid will not come back, that the brain lesions that were on the first scans will not be on the subsequent ones, that he will somehow get back into a normal development cycle-- and then we hope that we can continue to press forward even if our other hopes are dashed.
We have also stopped constantly searching for a reason for all of this. At first we thought there was something that we would have to learn and prayed that God would let us know what that was so we could learn it and move on. We then thought maybe it was something that PJ was supposed to learn or do that required him to have this experience, or maybe it was for his older sisters or his twin sister. Maybe it was for a friend, or a friend of a friend, someone we didn't know personally but somehow they needed to see a process such as this one. We were obsessed with finding what the one lesson was before; now we are looking at this as a series of lessons, not knowing for sure the length of the course or who else is in the class but feeling the only way to pass is to keep progressing.
