Speaking about Monday 31st, Matt wrote:
Today has been extremely difficult for us. As I write this I am exhausted & feel emotionally beat up and spent. Our heart is broken for Phoebe.
Phoebe has continued to run a fever throughout the day but it finally broke this afternoon. She has had tests for pretty much everything imaginable, neurological, respiratory, infections, bacteria & so on. Every test that has come back, has come back negative but we are still waiting for some results. Right now she seems to be improving some physically but getting worse neurologically. The neurosurgeon has ruled out the possibility of a shunt malfunction/infection and he has ruled out further tumors. This leaves only one likely possibility of a problem, infection. As a result, she has been put on a very broad spectrum of antibiotics to cover a wide array of possibilities including Meningitis, but Meningitis has not been ruled out yet.
A neurologist has now been called as Phoebe appears to now be having seizures although this isn't confirmed yet. She is also going in and out of consciousness. She has said extremely bizarre things like "don't you dare hit me with that" or "please daddy can you carry my plate to the kitchen". It hurts deeper than imaginable to see her this way. Tonight she is hooked up to an EEG machine and we will know more about this tomorrow.
We are completely at a loss. No one knows what's happening in her little body or mind and therefore her treatment is likely to be too general to cure the problem. Please take time to pray for Phoebe, as often as you think of her or us. We are powerless and the doctors are powerless but there is one who holds the power to life.
A friend reminded me of this today "The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus."
The Lord is at hand. Please pray that we will continue to trust Him now. We need our Father to intervene to heal our girl.
Big hugs!
Their situation is summarised by Matt writing this: "I couldn't beg you more but please pray for Phoebe."
Messages received today (1st August):
[31/07 21:16] Matt: Just spoke with Neurosurgeon and
a doctor for Infectious Diseases. At this stage they are wanting to focus
everything on the likelihood of infection, virus or bacteria. Could even be
some extremely rare water born bacteria from Lakes. She got through the lumbar
puncture just fine but is far from being well. They don't think it is
shunt/neuro related at this stage.
[01/08 00:06] Rachel: Lumber puncture was hard because of all the associations of Feb 2015, but we're glad that it looks v unlikely to be shunt related , but frustrated that we still don't know what we're dealing with . Feeling calmer again now and being well supported by church here.
[01/08 13:12] Rachel: Only test that's come back
positive is for CDif which would explain the diarhea, stomach pain and fever...
but I can't imagine how something so common could cause such neurological
issues... neurologist has looked briefly at EEG results so far and says it does
suggest seizure activity but the test isn't finished and this isn't confirmed
yet.
After lunch we (Jon, Rosanne, Jen and Marcus) had a video call with Phoebe and Matt. Phoebe has bandages around her head holding electrodes in place while they track the activity in her brain. She knew who we were but was confused as to where we were. Then, as her eyes fixed, it seemed that she had a mini seizure.
It was so good to see and speak, but it underlines the gravity of the situation.
We seek to comfort each others with words like this:
Psalm 46:1-3 NIV
God is our refuge and strength, an ever-present help in
trouble. [2] Therefore we will not fear, though the earth give way and the
mountains fall into the heart of the sea, [3] though its waters roar and foam
and the mountains quake with their surging.
Thank you!
May the Lord bless you too!
Marcus and Jen
