Wednesday, August 22, 2007

It's been more than a week since my last post and I have much to share the short is that damage that the seizures caused Elijah's body was too much for his body to handle and he suffered total liver and kidney failure and massive brain damage - and was not expected to live 24 hours and so we gathered the family and let him go to Jesus when his ventilator was turned off to allow him to breath on his own which he didn't and he went to be with the Lord approx 5:40 on Monday the 13th of August 2007. For Elijah life has only changed not ended. I want to share the journey with you as I have for these many months, the last hours of my son Elijah's life, what I am going to share with you maybe hard for you to read as it is hard for me to write but as I have always share the raw reality highs and lows of the journey I will share it like that still - I will be writing in several posts.

- I slept overnight on Saturday night with Elijah and there was no real change to Elijah's condition. I am sad to say that Elijah did not make any more progress and than my last post. When the medical staff tried removing the breathing tube from Elijah on the ventilator on Sunday Morning he did not respond breathing on his own as he had been doing on the ventilator and so they had to put the tube back in. We learned on Sunday afternoon that some blood tests that had been done had brought back some significant results. at least two areas of liver function we abnormal. In most of us these levels would 100 and post seizure it's not uncommon for the reading to be up to 300, in Elijah's case they were 16000 and 17000 repectively - we knew that Elijah's liver had sustained a significant assault and so the decision was to add plasma, and some other medications to combat this assault, at that stage we really had no idea what other damage Elijah's body had sustained. Julie was due to sleep over and a close friend went into the hospital and I was going to sleep over. Francesca was sleeping over with close friends who live 9 doors up the road. I got a call from Julie to say that our specialist had decided to do a MRI scan. We had been alerted the day before that there was a possibility of Elijah sustaining brain damage, but the reality of this had not yet be realised. I said I would come back into the hospital. I found myself being physically sick and whilst talking to a pastor on the phone I really lost the plot. Because of the sustained length of time that Elijah had been on the ventilator that he along with Julie and I would be transferred to Starship Children's Hospital in Auckland at the other end of the country. Family soon 3 members of the leadership team of the Christian Community that we are part of were on the door step, to cry with me and to plan for the possibility of the the transfer which was almost certain to happen, so we worked through a plan and prayed and then one of the brother drove me to the hospital and another took my car in. I told them today is not the day for dying ! - to be continued - Darren

Saturday, August 11, 2007

Dear Friends and Family,

Thanks to those of you who have sent messages of encrouagement and support and offered intercession for us and Elijah as well feel buoyed by this and hapy to report that Elijah is progressing.

Julie slept in the hospital with Elijah and he was sedated overnight. This morning they stopped the sedation @ 5am and happy to report this ealy this afternoon, Elijah initiated breathing on his own - Thanks be to God. We now need to wait for him to awaken himself - his body will be exhausted and it will take some time for it to recover. The medical staff will only remove the intubation tube connected to the ventilator when he gains consciousness - in the meantime it is giving him some added oxygen and so it's now a waiting time for him to wake on his own and there is no time frame on this. The Medical staff have been just fabuluous. After the he is off the ventilator he will be move from the Intensive care to a children's ward and the whole thing reviewed from there and kept under observation. This is the worst lot of seizures Elijah has ever had.

I hope to have another update when he stirs or perhaps tomorrow morning - thank you so much again for your prayers and you emails txts and good wishes. Please also keep in mind another little boy Brady who also has angelman syndrome and live in Alabama in the U.S. who has also been hospitalised with severe seizures.

Love and regards to all
Darren - on behalf of the Humphries Family
Friday 10/08/07

Hi friends,

Elijah hade a fever as a result of of some flu - coldy stuff that's been about in our house this week. Woke at 5 with a 15 minute seizure this morning - can't remember what it's called - jerking extremities - was about to take to hospital and then he was having seizures every few minutes with short gaps and so we called and ambulance - when I got to the hospital he had sezied in the ambulance and was then had a prolonged seizure lasting and hour - with vomitting - the end result was that he was have difficulat with breathing and oxygen saturation low - the long and short is that he is intensive care on a ventilator - to help with his recovery - this will be reviewed but he may need to be on it for up to 24 hours and see from there.

We have had a good number of trips to the hospital before but nothing this intense. Julie and I have been on quite a rollercoaster this morning

If you pray I would ask you to pray for Elijah Julie myself and out daughter Francesca - if not please send us your good thoughts.