Parker update March 10

Today was a long, tough day for us. We have now been introduced to the bad news room at the waiting place.

Renee was on first shift. Upon arrival at the hospital she noted his IV was gone-- unhappily they informed her that it was not functioning and that they would be putting it back in.

His neck seems to be getting stronger and he seems to be in less pain when we pick him up. He can do more physically each day and he continues to be curious about his surroundings.

We had planned an auditory test at 1PM but they ended up having a slot open in radiology for an MRI. For the first time in 16 days Parker went outside as a nurses aide pushed him in a jog stroller across the road to radiology while I carried the monitor closely behind trying to keep the wires from getting tangled in the wheels.

For the MRI they placed Parker on a flat board and then wrapped him onto the board with gauze until only the top of his head and nose was showing through. They then picked up the board with our little cocoon boy and hauled it into the machine while they took another cocoon out. Once the door is shut there are a lot of noises that sound like someone is trying--unsuccessfully- to find the right radio station while on full volume. Luckily the nurse tech was very cheery and joked with us quite a bit-- otherwise we could have been a lot more apprehensive.

After the MRI we went for the auditory test-- which was in another building. While we have come to be very fond of the competent personnel at Necker, and the equipment seems appropriate, the facilities are less than optimal. Two-hundred year-old buildings which seem to have been last redone sometime in the 1970s do not provide a feeling of "modern".

The auditory test (ABR) confirmed our deep suspicions; Parker tested completely deaf in both ears.

The doctors are suggesting cochlear implants which should allow him some type of hearing but they suggested doing this quickly as there is a risk of ossification--that the membranes become brittle and the implants become impossible. We are trying to grapple with what that will mean for him.

Following the auditory test, we went to yet another building for an echo-cardiogram. As we walked to the other building the rain fell briefly and the wind blew stiffly in our face. We bundled Parker a little tighter in his blanket to try and protect him, still trailing the monitor in the other hand. From this time on, Renee pushed the jog stroller.

The echo-cardiogram showed no abnormalities.

We then went back to the radiology building for ultra sound on his abdomen, head and thigh (where he previously had a thrombosis).

His circulation and organs seem to be fine. There are some nodes which they indicated as normal given the infection. There is still some liquid in the cranium.

The results of the MRI confirmed the cranium liquid, that it may have slightly increased and also noted several small lesions on the brain in different locations.

In the new bad news room we had Dr Claire, Dr Halfen, two ENT doctors and a Neurologist. The ENT's are confident that they can provide some sense of hearing but it is unclear whether or not the communication centers in the brain will allow him to be able to speak. The neuro-surgeons are discussing his case in their staff meeting tomorrow but they will likely either do a new puncture to relieve the liquid or put in a shunt in the next two days. They have indicated that he will be in the hospital for at least a week and then will need to transfer him to a therapy center.

When we came back from the new bad news room, he was sleeping beautifully in his bed. We saw that the feeding tube was now gone and, having never been able to get an IV in, no more life supporting/sustaining ties bind him to his bed. That phase is over.

Yesterday, I really wanted some answers, today I miss the questions. Ignorance is not bliss and in the end we all have to learn what we have to learn, but there is a certain level of comfort in imagining that all options are still open.

Did God hear Christ? As He suffered in the garden, was whipped, flogged; as the nails pierced through him, as he hung on the cross; did Jesus cry out? Did God hear Him? Scriptures tell us that God hid his face -- that he did not, could not see His only begotten son go through a part of the agony-- but could he block the sound? Did Jesus' mothers watch?

For 90 minutes the nurses, then the doctor, tried 11 times to get an IV into Parker without success. I could not watch-- Renee stayed by his side. As I sat in the hallway, thankful that Parker's voice was still at the whimper stage, I thought of my 7 year-old niece Emma who has spina bifida, does not have use of her legs and has been in the hospital many times. The most recent time they couldn't find a good IV line, after 9 tries, my sister Stephanie had to leave and waited in the hall while she only heard the cries of her daughter.

Sight is a gift that comes with a self-regulating mechanism that allows us to block out what we don't want to see; hearing, not the same. Sight allows us to interpret the environment around us -- we pull information with our eyes. Hearing is pushed on us-- sometimes we can choose not to understand -- the pained cry of a child, any child... our child, is difficult to deny.

Maybe Renee and I needed daily reminders of the lessons we are learning. So easily we forget what we have learned today. So many fears have suddenly rushed back to us. My perfect little boy hears nothing-that is the reality of today. He is still my perfect little boy but now he will have external signs which others will interpret as imperfections which are not his fault.

10 days ago when my sister Stephanie told Emma that Parker, like her, was going to get a shunt, she responded naturally that it was ok and that one day Jesus would heal him, just like he was going to heal her.

We keep our faith-- not the cheerful, child-like faith of my niece-- the faith that Jesus showed, the faith that compensation comes through suffering and work and trial. Because He suffered we hold firmly, desperately, to knowledge of a resurrection to perfect restoration. That He could cry out and ask the question 'if there was another way?' assures me that I too can cry out and ask.