Today’s consultant is from Youghal in Cork so how could he be anything but nice?
Leah’s oxygen requirements remain unchanged & he is going to lighten her sedation so that she can respond to us. This makes me feel better as I miss her terribly when she’s fully sedated.
Her kidney function tests are “trending upwards” which is “doctor speak” for getting slowly worse, but they are not yet at the stage where she needs dialysis.
The problems with her kidneys could be caused by all the anti microbial agents she is on (antibiotics, antivirals, antifungals, ) or it could be all part of the inflammatory process taking place in her body.
The Docs are waiting on today’s update from the microbiologists re the samples that were sent off on Monday.
If none of these have grown anything then they will take her off some of her antimicrobials which will hopefully lighten the load on Leah’s liver and kidneys.
They will also be able to drastically increase her dose of steroids and they will give her the intravenous immunoglobulin that was recommended yesterday.
On Sunday when a church minister was visiting us, Leah starting playing the song “One Thing Remains” on her iPad and when we weren’t taking any notice she gestured to the iPad for us all to listen to the song:
“In death, In life, I’m confident and
covered by the power of Your great love
My debt is paid, there’s nothing that can
separate my heart from Your great love…
Your love never fails, never gives up
Never runs out on me [3x]”
Leah’s not so well today & her oxygen has been turned up again.
This & some other test results are giving some cause for concern.
They are keeping her more sedated so she’s very sleepy & can only stay awake for a few minutes at a time.
However she’s in good form & likes listening to music on her iPad.
She put on a song called “Nothing is Impossible” by Planetshakers & grabbed my two hands & we danced.
“For it’s You who give me strength,
Nothing is impossible
Blind eyes are opened,
Strongholds are broken,
I am living by faith,
Nothing is impossible!”
Leah gives me lots of hugs & kisses & insisted on me finding hand cream so that she could try to give me a hand massage but she couldn’t stay awake.
If she catches me not smiling she will reach out with her fingers & pull up the corners of my mouth. When staff come in the room she smiles & waves & gives them thumbs up signs.
Our night was punctuated by dropping oxygen levels, Drs visits, nebulisers & retching.
Leah’s going on a ventilator around 12 or 1pm today and the biggest risk to her life will be during the process of installing the ventilator equipment in her body.
Once it’s up and running everything should be ok.
When Leah was 3 years old she came home from Good News Club and said that she had asked Jesus to forgive her sins & live in her heart as Lord & Saviour.
Since then Leah has sought to love and serve God with all her heart.
In April ’13 when Leah was diagnosed she said two things “God has a plan for my life” & “Mummy, we have to see the bigger picture”.
After the Dr had called me out of the room last Saturday to give me his “your daughter might not survive talk” Leah typed on her iPad “What did the Dr say” I answered her truthfully & in simple terms. She nodded her head & shed a single tear but showed no fear then or since.
Leah knows the truth of the Bible verse “To live is Christ, to die is gain.”
Of course Leah wants to live and I want – more than words can express – for my child to live, but it’s also hard to see your child suffer so very much.
I know that 100s maybe 1000s are praying for her healing and this is what I want, but I have to trust her in the hands of the one she loves & Who died on the cross for her & for us all.
“Never once have we ever walked alone”