Parker update Feb 28

It was a quiet day today for our little guy. I think he is building up the reserves he needs for the next couple of days.

PJ was alert more in the morning and he was moving all his little limbs. He also seemed to shake his head back and forth when they rubbed him down today. His finger grip is also getting tighter and he is coughing a lot on his own to try and clear himself.

The intern said he was doing much better and that they were lowering his oxygen and respirator intake. No convulsions again today.

As it is Saturday there was a lot less going on at the hospital and there was limited staff. Gaelle, one of our two favorite nurses (the other being Florence) was back but was under a lot of time pressure and Doctor Oualha was difficult to access throughout the day so we really never got a formal update. Gaelle assured us that it was a good day and that he was clearly getting stronger.

We were trying to figure out if we could sleep at home tonight but although things are looking up -- it is still hard to imagine him being so far away-- even if it is only a couple of miles. I went home for the first time since this all started last saturday to take a real shower and see the kids (only Abby was awake) but Renee couldn't see herself being gone for so long. So we are back to the bad news room couch.

A dear friend dropped off a talk on meeting the challenges of adversity and we found a lot of comfort in reading some of it. One passage seemed to be particularly appropriate in that it stated "we experience hard things so that we too can have compassion and understanding for others."

We have now spent six days and nights in the ICU and we have seen some people come and some people go. One little girl left yesterday after being here for eight months. Another small baby arrived and has been crying quite a bit-- how great it has been to hear a baby cry. Many of the childrens parents come each day for a couple of hours but then have to get back to their other responsibilities. While we feel so blessed by the prayers that have sustained us spiritually-- the physical and temporal support is no small miracle. We live several thousands of miles away from the majority of our family yet our four little girls are having their temporal, physical and emotional needs (and honestly a lot more of their wants than if it was just mom and dad) met on a daily basis by an extended cast of loving people. This enables Renee and I to be near our sweet boy all the time. With such a level of compassion shown to us we are striving to find how we can be more compassionate to those around us in an honest and meaningful way.

Parker update Feb 27

Today was a good day. We were somewhat concerned that yesterday was the calm in the "eye of the storm" but it seems that, at least for the risk for Parker's life-- the light of heaven is dissipating the clouds.

At the start of the day we noticed that Parker's eyes were opening a bit. We also noted that is left foot was flexing somewhat and that he was kicking from under the covers. As involuntary movement is not a good sign I was initially very concerned that the convulsions were back but the nurse indicated that these were Parker's own movements and there had been no convulsions overnight.

He also did well in his respiratory therapy and he recovered quickly after his treatment. For those unfamiliar with what this entails it basically is a therapist trying to forcefully massage mucous out of your lungs and make you cough up junk which they then suck out. Even on healthy kids this is a somewhat traumatic experience.

After his respiratory therapy they got a slot to take him to the CT scan and they rushed us off to get that done. This time they gave us the lead shields and let us stay in the room during the scan. He remained fairly stable during the scan and after although his heart rate did drop a bit. After he got back to the ICU his heart rate and body temperature dropped a bit but the doctor's and nurses seemed to be less concerned and they were willing to let him recuperate himself (which he did after a matter of an hour or so).

They hooked him back up to the EEG but they said it was just to confirm the lack of convulsions as there had been none in the past 24 hours.

They also told us that we no longer have to wear masks in the room with him-- something about being able to see the doctors and nurses faces and reactions and they ours has made a big change in the feeling in the unit. Renee couldn't stop kissing him. Its just not that easy or satisfying to kiss your baby through a paper shield.

They also seem to be gradually reducing his oxygen levels to reduce his dependency.

This afternoon Abigail, Hannah and Axelle were able to come in and see Parker. They were excited to see their brother and put on the blue gown, hair nets and masks and now they all want to be doctors or nurses when they grow up. They did well and were not too afraid of the machines. Parker also seemed to respond well to them and at one point opened almost completely his eyes -- which is quite a feat given he is on two different types of sedatives.

In the evening briefing, in addition to our doctor and nurse, there were two neuro-surgeons who explained to us his treatment plan. They did not find an Empyema (Quick editorial note-- in yesterdays update we mentioned hematoma--as opposed to empyema-- apologies for the misunderstanding but we are just getting used to the french neurological terminology). They did say there was continued fluid on the brain which was cloudy. They then indicated that they envisaged putting in a drain for the cranium which would allow the fluid to drain into the stomach. They also mentioned that the drain would not be permanent and that we could come back and remove it in a couple of months. In that short phrase our hearts lept several times as they were saying that there was a horizon past tomorrow and that he would not be in the hospital all of those months. Dr Oualha confirmed that today we saw improvement-- this was huge for him to say. He said we are still in a critical stage and would like the improvement to be confirmed but there were several positive signs today.

The plan is to do the operation on Monday or Tuesday of next week and confirm the functioning with an MRI around the same time. This will give us a chance to see what kind of neurological damage has been done but it gives us a few more days to gear up for that next battle.

There is a room at the hospital here that lies in stark contrast to the rest of the hospital. It has leather chairs and a matching leather couch (that folds out to a bed), some dark oak furniture, classic looking lamps and a couple of posters of Matisse paintings. It is supposed to create a feeling of serenity and it is about 50 feet down the hall from where the ICU is. This is where the doctors come to tell you what is going on and we have come to call this "the bad news room". This room has also been our home for the last 5 nights. Each night they have told us that we can use this unless there is another child who arrives who is sicker than ours. For five days we have woken up in this room with a knot in our stomach and walked down the hall with anticipation of what we might find. This may be the last night we spend in the bad news room.

Today we feel mostly a profound sense of gratitude. Gratitude for so many people who have sustained us through so much-- some that don't even know us or Parker. Gratitude for a tiny foot wiggling in a bed and thinking that one day this could kick a football. Gratitude for a weak but determined grasp of my pinkie with the thought that one day my son could walk by my side holding his hand firmly in mine. Gratitude for small eyes furtively blinking open with the hope that one day those crystal blue eyes will open wide with that sparkling smile of recognition and love. And gratitude that even if these plans are never fully realized in this life-- they are still beacons of hope.

For those who have prayed for us and Parker we express our heartfelt thanks for your amazing faith which God in his mercy has responded to in clear measures. For those continuing to pray, please add a prayer of gratitude for what he has given us so far.

Parker update Feb 26

Yesterday was a very tough day for us and I think we needed some small rays of sunshine. Our little trooper seemed to sense that we may have been at our limit and gave us a couple of cherubic handfuls of hope.

The convulsions seem to be less frequent and they are better controlled by the medication. They also determined that the pressure in the cranium was a bit more subdued and did not need to do another liquid drain from the cranium.

He also responded better to some of the therapies that they did on him without his vital signs declining dramatically.

Our doctor (Dr Oualha) is quick to point out that these are one days results and tomorrow could be like yesterday and that stability is no replacement for improvement but right now we have a renewed hope in his survival. The doctor also has started talking about next steps and things they will be looking for during early next week. While this means that the path has yet some steps to be trod it also means that we have another day or two with our son.

Parker was the focus of the ICU services conference today and they spent several hours with pediatric neurosurgeons and neurologists discussing treatment options.

They now believe that there may be a hematoma on the brain and are planning to run another CT scan either tomorrow or Saturday to localize this and treat it. They are not sure if this will be possible by accessing through the soft spot or if they will need to perform a more invasive neuro-surgical procedure. They are also not sure if the CT scan will be sufficient in which case they will need to do an MRI which is a bit more complicated. In any case the next couple of days will be a bit active.

Rachael (Renee's sister) was able to come into the ICU unit to be with him today. Tomorrow the girls are going to have a chat with Dr Oualha and a psycologist and then maybe get to come in and see PJ as well.

We have started to realize that while we want the right answer right now the only immediate conclusion is not a happy one so we are willing to wait a little bit longer, or maybe a lot longer to get to a happy non-ending.

We realize that our lives are going to be changed by all of this and Parker's life as well may be changed by this-- and we are starting to work towards acceptance of that eventuality as a possible outcome.

We are so blessed to have the love and support of so many and feel so undeserving and humbled by the strength of the pure charity of heart that has been shown to us. I spent the better part of last night fighting to get away from an overwhelming sense of despair and trying to find that perfect brightness of hope. The scriptures you send, thoughts you share, candles you light and faith you express give us those first few beams of morning light.

Parker update Feb 25

Today is difficult for us and our little guy.

He slept well through the night but when they went to hook up the EEG at 8 o' clock this morning, he started having some visible convulsions with his right hand moving involuntarily.

When they got the EEG hooked up they noted that he was basically having convulsions fairly continuously now on the left side of the brain whereas yesterday this was on right side (due to the pressure caused by the liquid). Anti- convulsion medication was not having any effect so they decided to do another brain drain this afternoon and they pulled off 34cc of fluid from mostly right side of the brain. The convulsions seemed to stop for a time but then returned indicating the brain is in distress.

We are now relying on faith in God as it is only he who has the ability to produce the miracle. We are also looking to reinforce our faith that we can withstand all things..

We are hanging in there and drawing hope from small miracles. The fact that his soft spot has remained open has enabled them access to his brain without having to drill a hole through his skull.

They have him on a lot of saline solution to help drain the liquid from the brain which has caused him to swell up in his appendages and has some reaction that makes his cheeks very rosy so he looks very cherubic right now albeit with a lot of tubes and lines going into him.

I ventured across the street to a grocery store to buy some water and found they sold Dr Pepper and oreos-- in our almost nine years of living in Paris I have never seen that magic combination of comfort food.

We saw the girls for a little while today and they are in excellent hands with some earthly angels. They seem to be coping well but they want their brother back. Penelope seems to be benefiting from the positive attention of being the only baby around.

We have been living in the hospital for over three days and we are having the realisation that the adrenaline is running low and we need to recharge a bit but it is difficult for either of us to imagine leaving here without Parker.

We are looking for what the lessons we are supposed to learn from all this are but we are having a hard time accepting that one of those may be patience.

Thank you all for your continued support through this. We feel that we are taking the steps we can take and that your combined faith and prayers carries us that much further. Renee and I have exchanged periods of highs and lows and when one of has started to falter we have always had the other one to lean on throughout the day. I am so proud of her and feel so richly blessed that she is my wife.

Parker update Feb 24

Parker was calm the night and this morning. His vital signs drop quite a bit when he is moved so they try to disturb him as little as possible.

He was coughing some today which is a positive sign that the cerebral stem is still working-- although this does tend to increase the pressure on his head.

He was on the EEG today for five hours and for a period of two hours he was having involuntary convulsions with his left hand which they interpreted as there being a possible abscess on his right brain. In order to determine they decided to do a CT Scan even though the risk of decline was higher as they would have to move him. We were able to accompany him all the way to the room and he remained stable throughout the scan. They did not find an abscess but did find that there was excess fluid on the right brain which was likely causing the pressure.

They had to stick a needle into his head through the fontanel (soft spot) to drain out the liquid which should relieve the pressure on his brain. On the first attempt they determined that the platelet count was too low so they gave him some platelets and then tried again. The second time they pulled out 20ccs of fluid which was dirty (has bacteria in it). They are hoping this will relieve the cranial pressure and will be monitoring this. Tonight he is being monitored very closely as there is an elevated risk of decline.

While we have had a very emotional past few days we have been sustained through the prayers and fasts of friends and family across the world. It has meant so much to us that so many of you have been praying for our little son and we have derived strength from this (and know he derives strength from this as well) throughout this time. We have been encircled by such a level of love and support and so many offers of help for us but also for our girls who have been without their parents for the past few days. We can never express the true measure of gratitude for your e-mails and texts as they lift us up when we have our very real moments of fear and desperate heartache. The road before us and
Parker is still very uncertain but want to thank you for the sustaining support you have given us the past 48 hours.
We feel the heavens resounding with your fervent prayers.

Our love

John & Renee

Parker update Feb 23

We had an update from the doctor and basically here is what we know:

The menigitis bacteria was a pneumococol strain and was a particularly aggressive one.

There are signs that it attacked the cerebral trunk (we think the cerebellum) which controls his heart and his lungs. There is also the possibility that it attacked the brain itself. Both of these are "incompatible with life".

He does have brain activity-- and he has some capacity to breathe for himself.

They are pretty confident that they have wiped out the bacteria with the antibiotic treatment but they are continuing.

He has been given a blood transfusion as his hemoglobin count is low.

He basically can be stable, decline or improve. Unless he improves over the next 48 to 72 hours his life remains in danger.

After that they will be able to determine what damage may have been caused to the brain.

The doctors are doing what they can for him but at this stage it is up to God and Parker which way this will go. Please keep him in your prayers.

Parker Update Feb 22

Would call but it is difficult to talk right now.

Parker was admitted to the hospital this afternoon and has a serious form of bacterial meningitis. He is currently intubated, has a central line in and is under heavy sedation. The bacteria is very aggressive and has attacked the part of the brain that controls the heart and the lungs. He is now on antibiotics to combat but they are not sure how the treatment will impact and the next 24-48 hours will determine his survival. We are at the hospital Necker which is a specialist pediatric hospital in Paris.

Assuming he makes it through this there is a clear risk of neurological damage and they have no way of telling at this stage if there is permanent damage and to what extent.

I woulld ask you to please pass this on to the rest of the family or friends you may know (yours are the only adresses I have on my blackberry) and also ask them to have a special prayer for our little boy. We are working through a lot of possibilities at this stage and don't have a clear vision on probabilities but will keep you updated as we go along.

I have my blackberry on and will look at my e-mails from time to time. We are only allowed into his room intermittantly and there is no phone number to the room. Rach is at our place watching the girls.