Today was Sunday, a day of rest for us.
After yesterday’s challenges we decided we needed to give Parker a bit of a break— we needed it too.
PJ was responsive today, he has piercing, bright, blue eyes-- a gift from his mother -- and they seemed to be seeking his environment all day today.
His temperature seems to be controlled by the Doliprane (Tylenol-equivalent) but the diarrhea continues. They don’t have a clear idea of what is causing the fever and we are trying to be patient waiting for them to work through the different possibilities.
They let him try semi-solid foods this afternoon—Renee spoon-fed him apple-pear sauce and he ate half of the little jar before we decided that he needed to have some milk as we didn’t want him to lose his appetite. They have also moved his milk intake allowance up from 100 to 120 ccs and his weight seems to be slowly coming back.
Florence from the ICU dropped by to visit Parker and helped us finish his bath. It was good for him to see a friend and she reminded us how far he had come and how excited everyone in the ICU was with the progress he had made and that we shouldn’t expect so much so quickly. It was also a touching, but hard to explain, cultural moment with her as we decided that we would use the informal form of French—it was then that we realized that up to that point she didn’t even know our first names.
The end of the day is always difficult for us— difficult to leave but difficult to stay any longer-- tonight especially so as Parker was clearly agitated and flailing about somewhat wildly. It is painful to watch and yet reassuring that there is a possibility he could actually fling himself out of his bed. Eventually he calmed down and was resting peacefully.
We decided to take some time today to write down some of the details of how we got here 14 days ago while they are still somewhat vivid. Although I have had my computer at the hospital for probably the last 10 days with this purpose in mind, I have always found an excuse not to open in up and have preferred using my Blackberry to send out updates. Part of this is the fact that there is a challenge in blending the narrative of both of our perspectives. Much of this is due to the difficulty of having a look back and being honest with ourselves where we had lacked appropriate judgment—if we had done something differently, if we had recognized the signs earlier, if we hadn’t been so selfish with our time – things may have evolved differently. Also, I am not sure that I had the courage in putting all this down because for us; this has been an intense emotional, physical and spiritual experience and there is a certain level of fear and difficulty of committing all that to a tangible record. Another reason is that the events that have happened contain a very real religious aspect for us and I feared that those dear friends and family who do not share our particular set of beliefs would feel that we were trying to push our religion. We have learned much about our religion but we have also learned that Prayer, Faith, Hope, Charity and Love are not proprietary doctrine to any one religion and these can just as readily be found in people who are essentially non-religious. So, for whatever reason, today, on this silent Sunday, we feel that we are in a safe enough place to attempt to document the events leading up to our arrival at Necker, hospital for sick children, without trying to adjust or justify the reality.
The day he got sick was Friday, February 20th. There was a two-week break from school and Renee, Sarah (our au pair from Arizona who has been re-named Saint Sarah) and the kids were invited to the countryside to stay with our friends, the Quimbrots, at their country house in the town of Saints, an hour east of Paris. After four days of being separated, I took the day off that Friday and took the train to meet up with them with the plan to spend that day at Disneyland, stay the night in a hotel near there, and then go swimming at the indoor pool on Saturday before returning to Paris Saturday afternoon. Early in the day Parker seemed fine but as the day progressed he became a bit groggy. Sarah was watching the kids while we went out to dinner and while we were gone Parker woke up screaming with a fever. We gave him Doliprane and he slept that night but was wheezing with very shallow breaths. Our three-year-old daughter Axelle also came to bed with us that night complaining of ear-pain. As our five year-old Hannah had been diagnosed with an ear infection the day before (not uncommon in our house and an unhappy gift passed on by their father) we reasoned that this was likely the cause of all the problems. The next morning Parker’s fever did not respond to the Doliprane and we decided that swimming was probably not a prudent move and we needed to see a doctor. We packed up and returned to Paris late in the morning.
Renee called SOS medecins, the roaming house-call physician service that we had used so many times before, and a doctor arrived and looked at Parker and Axelle. Axelle had a burst ear-drum caused by an ear infection and he prescribed antibiotics for her. For Parker, the doctor looked in his ears and checked for stiffness in his neck (typically a sign of meningitis) but then concluded that he likely had a viral infection which would clear up in a few days. He was concerned about the risk of dehydration (he had really not eaten or drunk anything since the previous evening) and told us to give him fluids with electrolytes. He also told us that if the Doliprane didn’t work to alternate with Advil.
We gave Parker Advil and he slept the entire afternoon. Sarah noted that he was making some strange noises when he awoke and he looked like he had vomited – but the liquid was clear and was odorless. Sarah held him with a look of anticipation and concern. I am not sure why but I have an instinctual reflex to avoid hospitals or emergency care both personally and more importantly for our children. The sense of handing over control of your child into unfamiliar hands without a clear timing of when you will regain control is hard for me to accept. I also tend to trust that the body takes care of the majority of its own sicknesses without external intervention. At the point where he awoke in a pool of saliva, Renee suspected he might have had a seizure and suggested that we should probably go to the hospital. Needing some comfort, and having previously experienced the difficulty that hospitals in France have with any kind of religious vestiges, we asked a friend and fellow church member who lived nearby, Curtis Stone, if he could come by the house and we could give little Parker a blessing. Blessings, by those having authority to act in God’s name placing hands upon a persons head, are an important part of our faith for instances where someone is sick or in need of comfort. We have had a special relationship with Curt and his wife Janet, as when Penelope was sick last summer 8 days after her birth, I was out of town and Curt filled in and gave Penelope a blessing which was very comforting for Renee. On that Saturday evening his blessing promised Parker that he would be healed and would be blessed to grow up in a home where the power of God was present. Near the end of the blessing he also added a blessing upon the medical professionals who would be working with Parker that they would be inspired in caring for this little boy. I am not sure that Curt was aware of the trials that lay ahead for Parker but I remember finding it comforting that he had promised healing but disquieting the reference to medical personnel. We were reminded of the words of his blessing several times during the first critical days in the ICU and have clung to them in moments of doubt and despair.
That night, we decided to try and re-hydrate him and started giving him drops of the electrolyte-rich fluid by a syringe. As he slowly began getting more liquid, he eventually could take the bottle and we eventually got him around 200 ccs of liquid. We debated a bit but finally decided that we would see how he progressed overnight and if there was no improvement we would take him to the emergency room. That night we had him sleep in our bed with us and observed his shallow respirations through the night. In the morning he would cry every time we would pick him up or move him and we determined that it was time to take him into the hospital.
Being Sunday morning, we decided that Renee would go to the hospital, and I would take Sarah and the girls to church. Although Necker is the reference hospital in France for sick children, our previous three trips to the emergency room here were not reassuring as the facilities are very old and, as it is a public hospital, there is a lot of demand and long lines. We instead decided to take him to a hospital that had a children’s emergency room of Notre Dame de Perpetual Secours in Levallois, a suburb of Paris closer to our apartment in the 17th district. Renee had packed her backpack for what she envisaged to be a long day of observation and I dropped her and Parker off at the hospital around 9:40 and then drove to Church in down-town Paris.
Renee entered the emergency room and explained the situation to the receptionist and at that point indicated that she suspected he might have had a convulsion the previous evening. This alarmed her so she relayed the information and within five minutes a nurse was examining him and indicated to the doctor next door that Parker was very limp and he should look at him. After a very brief examination, the doctor indicated that the soft-spot was bulging and he felt this was a clear sign of meningitis. The doctor was on the telephone to British Hospital down the street to see if they could get a bed for Parker as they were not set up for anything more than outpatient care. As they could not guarantee Parker a place immediately they decided to treat him immediately and led Renee and Parker back to a makeshift treatment room and did a lumbar puncture where a large about of liquid was released and Parker seemed slightly relieved. They then hooked Parker up to an IV to start treating the potential meningitis with antibiotics and steroids.
At some point during this, 10:30 or so, Renee left me a message saying the preliminary diagnosis was meningitis and that it was most likely viral and he could be in the hospital for 2-3 days. If it was bacterial he could be hospitalized for 2-3 weeks. We left church quickly after the meetings and didn’t get a chance to talk to Rachael but I did speak with her husband, David, who told me the girls had told them that Parker was sick and he offered to come over in the afternoon to help if I wanted to go to the hospital.
At the hospital, the doctor was on the telephone with the doctors at Necker and at some point they decided that they needed to transfer Parker directly to them as soon as possible. The doctor informed Renee of the transfer and asked if she had reached me yet by telephone. At this stage I had only been getting messages from her but we had not spoken. As the doctor escorted Renee to the ambulance, he insisted again that she call me and gave her his phone to try but I only got the message.
Finally, when Renee was getting into the ambulance she tried again, I was putting together a pizza for the girls and talking to a friend on the house phone when Renee called me on my cell phone. She sounded distressed and said that they were being transferred to Necker and I needed to come quickly. I asked Sarah to finish the pizzas and told her that I needed to go to be with Renee. As I changed, I noted a phone number my caller id from an unknown cell phone which I called back to find the doctor who transferred Parker. He indicated that it was serious but somewhat re-assuring in that there was no immediate life-threatening risk but he encouraged me to go quickly to Necker.
As they turned the sirens on the ambulance and began the ride across Paris, the two medics were struggling to get their footing as they continually worked with Parker checking and re-checking his vital signs while Renee sat surreally in a state of shock watching as medicine and equipment would fall to the floor as the ambulance careened around corners. The drivers and medics would glance at her once in a while with a very non-reassuring look of compassion/pity while Parker’s vital signs seemed to be dropping and they prepared and administered medications.
When they arrived at Necker they immediately took him to the 3rd floor of the ICU where a team of 15 medical personnel waited in the hallway. As they took possession of Parker Renee felt herself being moved slowly away from the side of her son until at some point she was standing in the entry way trying to listen to what they were saying but not being able to comprehend what was going on. At several instances they would look over at her with that same look of pity and she could hear them talking about her observing the scene. One of the aides came and asked her to sit down in the waiting room but Renee could not sit down in a room filled with complete strangers to wait while around the corner they tried to revive Parker’s vital signs so she stood there wedged between the coffee machine and the garbage can with her backpack in one hand and Parker’s car seat in the other.
As they moved him out of the hallway into the unit, Renee called me again and said I needed to come quickly as she thought Parker might die in the next 10 minutes. Might die? Up to that point I was busily working to take care of the girls, and get a couple of things organized for the evening under the reassurance that Parker, my little boy, my only boy, was sick, maybe very sick, but he just needed a little medicine. Might die was not comprehensible to me. I clung to the words that what the doctor told me on the phone was the reality and that Renee was being an overly dramatic mother, but I was starting to feel a sense of urgency that I had not had before.
I texted Rachael to please come over as soon as she could and assured with Sarah that it would be ok if I left her there alone until Rachael came. I got the helmets for the scooter ready, found a map to see roughly where I was going and told Abby that I was going to the hospital and Parker was very sick. When she questioned whether he would be ok—I couldn’t say – I didn’t know. I hugged her tightly and told her she had to be a big help to Sarah and Rachael in taking care of her sisters. I walked out the door as another friend from church; Dave Daniel was coming in the door to drop something off. He could tell I was distressed. I made it halfway to the scooter and then came back into the house and gave Axelle and Hannah a hug while they watched a show—somewhat oblivious to their teary-eyed father.
Just before 2PM, Renee was returning from admissions as I arrived. The nurses told us that they tried to wait to intubate him until we were there but could not wait for us. They said we could see him briefly, give him a little kiss and then they would come talk to us as soon as he was stable. They showed us the locker where we could put the backpack and helmets, how to put on the blue gowns, the mask and wash our hands and then they showed us to the room. They told us he had been intubated to regulate his breathing and that in addition to the antibiotics and steroids they had started him on sedatives to calm him down. We had about 30 seconds in the room with him, looking at all the monitors and hearing all the sirens, then we each gave him a kiss on the forehead or cheek and were escorted to the bad news room. There we waited for about 90 minutes just working through what was going on and what it meant. Dave Arnold, who in addition to being one of our very good friends is also the Bishop of our church congregation here and an important spiritual guide through all of this, called and asked what we needed but at this stage we could only communicate that it wasn’t going well.
When Doctor Heilbrunner (Claire) and the nurse Nor-Edin finally came to talk to us around 5PM, we provided them a background on Parker and the events that had got us to that point in as much detail as possible. This is when they told us that he had a very aggressive form of, most likely, pneumococcal meningitis and that they were treating this aggressively. They also told us that there was the full range of possibilities, full health to death, but they did not have a good idea of the probabilities of this but that the next two days would be critical. This was a difficult thing for me to hear—I was still hanging to the fact that this couldn’t be happening to us, that the doctor from the previous day was somehow right and that the doctor from that morning told us that it was not life-threatening. But there, in that instant, mortality was tangible, life became a question and we became fragile.
Despite that sinking gut-punch feeling, we decided quickly on a couple of critical things. First: we could not do this alone. In general we like to believe in the notion of self-sufficiency and independence—we can do anything we set our mind to and there is no challenge that we cannot face alone. We perceive that dependence and seeking for help is weakness and strong people, good people, go it alone. We determined quickly that this was bigger than us and realized that the concept that God had always encouraged us to strive for was unity—not individualism. While in other circumstances it would be difficult to swallow our pride and depend on others, there was no logistical way to do otherwise; no way for us to shoulder the whole burden—the stakes were too high. If people offered to help, we would not, could not, turn them down.
Second: we decided that we needed to do this together. We know that the center of the family unit is a marriage; in our case between one slightly imperfect woman and one very imperfect man. That unit has strengths that can compensate for the individual members’ weaknesses and in retrospect it is clear that neither would have made it through on our own. As part of our newfound willingness to outsource a major part of our responsibilities, we came to the very difficult realization that in order to operate as that unit, one of the responsibilities we would also need to delegate, for a time, was that of our precious girls. We received blessings of comfort and felt reassurance from God that this was appropriate and they would grow from this experience as well.
Third: we decided that all of this belonged to God. Whatever the doctors said, whatever the empirical evidence showed, whatever the news was, God could perform miracles. We had seen them before and maybe ignored them but we were at a point where we wanted and were willing to believe in them again.
At 6PM that Sunday night, we sent an e-mail to the 7 people I had e-mail addresses for on my Blackberry asking them for help and prayers and asking them to forward this along to those who might be willing to assist. The result was immediate, overwhelming, faith-promoting and life-giving.
On the very Sunday we came to the hospital and before we even had started to inform people or knew clearly what was going on, Amy Herrick from our church family, brought over Lasagna to take care of the physical needs of our family somewhat abandoned at home. She had sensed when I talked to her at church earlier that day that she would be called to help and responded to the call from the Spirit. She brought the first of many meals (many of them not Lasagna) to assure that the basic care for getting people fed has been sustained in an over-abundant manner each day.
Renee texted her friend Claire Quimbrot, who she had been with the previous week to let her know that if she saw any signs of odd behavior in her kids, react quickly. Within minutes we were receiving calls and texts from friends and neighbors showing support and wondering how, desperately wanting, to help us in any way they could. They organized play dates with friends, had their neuro-surgeon friends call us and made us feel loved for who we were and not because of what we had done for them.
When our bishop Dave Arnold got the first e-mail, he was at a meeting with several other members of our church and passed the message to all those around him including the regional leader of our church who immediately organized a fast, asking people to go without food or drink for 24 hours and pray particularly for out little boy. In response, hundreds of people, from all walks of life and cultural backgrounds in the Paris region did not eat or drink for a period of time as sign of sacrifice to God.
Dave Arnold and Dave Daniel came to the hospital that very night and gave Renee and I blessings of comfort to help us through the trying times. They promised us strength and counseled us to release much of our burden to the strength of others. Then they went home and organized all of it so that it would work.
As we sent the first e-mail, people seemed to respond in amazing ways. Some friends we desperately wanted to contact as they had been through similar challenges somehow got our plea for help and sent us reassurance and strength. People passed the message along to their friends and their churches, and then they passed it along again, and again.
Each day has been a challenge. Each day has brought doubt and fear and worry. This is not a happy joyful experience where we sit back and continually bask in the warm reassurance that everything is going to be fine. We get tired. We get grumpy. We wonder if we are being selfish and requiring too much of others. We become critical of ourselves, each other and those around us. We ask why. We feel guilt. We fear. On the whole the days are long and painful—for our little boy and for us. Clouds which dissipate with breaks of sunshine seem to find their way back just as fast as they left.
We hope dearly that none of you ever has to go through something like this. We are so grateful for those of you who have-your experiences have helped us to understand ours, and put it in perspective.
We hope, we love, we find joy in little things, we draw strength from each other and from you. We find moments of happiness and belief. We have seen and re-experienced the miracle of life and have felt and feel the armies of prayerful souls lifting up our little boy, and us with him.
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