Savannah went for her three month injection yesterday. It is hard to believe that she has made it so far, considering that she was not going to come home, according to the medical staff where she was born.
The last few weeks have been challenging, more so that all of our previous children, who were by comparison quite easy. She has been putting on weight thanks to a healthy appetite, which keeps us busy supplying her with about 120 ml of formulae milk every few hours - at last count she weighed about 3 kg. This after three months is still severely undersize; I remember how our boys doubled their weight in the first three months to nearly 7 kg's.
Just lately we have had some touch and go situations with Savannah, and as I write she had been stopping and starting breathing through the night. She suffers with something called Sleep Apnea, which is just that - she stops breathing for 10 seconds up to 2 minutes (that we know of). Then her body, which becomes limp in the process, losing colour and vitality, seems to jerk the lungs back into action again, and she gasps, or cries in pain, as breathing resumes.
It is quite terrible to watch, and one does not know what to do - shaking her or moving her seems to hasten the recovery, or prolong the attack, since the alternative is that she may not start breathing again. I was called at work last week at about 3 pm, to say that I should hurry home because the frequency of attacks had become severe and it was not certain that she would make it. Two faithful colleagues at work prayed fervently with me before I left, and Melanie said that she had prayed with our friend (a doctor) who had advised Melanie to call me home urgently. This seemed to stay the attack, which stopped after three hours or so.
We discussed the use of medicine to minimise the pain that she was obviously experiencing, as this type of controversial treatment has been researched in HIV/ AIDS infected infants who stop breathing or are struggling to breathe, instead of ventilation. When one sees your child's little face contort and go purple and pale, and hears her muffled gasping shriek as her lungs snatch some air, while her body contracts at every muscle, it seems the least that one can do to cause some abeyance to the suffering that is so clearly happening.
I wonder if brain damage is happening each time she stops breathing, and how much of what she is going through she can comprehend. One thing is plain - her cries of pain when she does recover from an attack are very real.
Last night Melanie called me to the bedroom, her face distressed, the fear in her eyes telling a tale that we had hoped not to hear . . . Savannah had stopped breathing and had not started again as she usually does. I picked her up, her body limp and discoloured in my arms, wondering if this would be the moment that I had dreaded yet expected. Fortunately she gasped, sucking in precious air into her oxygen starved lungs. Her breathing sounded like a rasping, grating effort, as if her lungs were sawing through the air as it came down the air pipe.
This continued until late into the night, until we could bear the shrieks and muffled gasp no longer, and put her into her cot, closing the door, to try and get some sleep, the stress induced fatigue overtaking us. Our prayer was that god would either take her during the night, or that she would recover from this episode, as she had always managed before.
Apparently she has a chest infection so she is breathing through porridge or syrup-like mucus, which just aggravates the situation, putting more strain on her already tired and aching body. She was examined early this morning by a doctor friend, who kindly offered to treat her at home, as our chosen alternative to rushing her into hospital again, where they would have to stick needles into her soft arms and stick tubes down into her stomach for feeding, and ventilate her. Apparently home based care is quite common overseas but is relatively unheard of in "terminally ill" patients here in good old SA.
She is sleeping now, after some new medical treatment to ease her suffering that we are trying as of the last prolonged episode of Apnea's. I do not know how long she will still be with us, our daughter of the open spaces, who for now seems confined to a body that is malfunctioning, misfiring, struggling and yet persevering.
Some scriptures that come to mind, by grace from our Father in my devotional this morning, if you are given to pray with us;
Psalm 77
For the director of music. For Jeduthun. Of Asaph. A psalm.
1 I cried out to God for help;
I cried out to God to hear me. 2 When I was in distress, I sought the Lord;
at night I stretched out untiring hands
and my soul refused to be comforted.
3 I remembered you, O God, and I groaned;
I mused, and my spirit grew faint.
Selah
4 You kept my eyes from closing;
I was too troubled to speak.
5 I thought about the former days,
the years of long ago;
6 I remembered my songs in the night.
My heart mused and my spirit inquired:
7 "Will the Lord reject forever?
Will he never show his favor again?
8 Has his unfailing love vanished forever?
Has his promise failed for all time?
9 Has God forgotten to be merciful?
Has he in anger withheld his compassion?"
Selah
10 Then I thought, "To this I will appeal:
the years of the right hand of the Most High."
11 I will remember the deeds of the LORD;
yes, I will remember your miracles of long ago.
12 I will meditate on all your works
and consider all your mighty deeds.
13 Your ways, O God, are holy.
What god is so great as our God?
14 You are the God who performs miracles;
you display your power among the peoples.
15 With your mighty arm you redeemed your people,
the descendants of Jacob and Joseph.
Selah
16 The waters saw you, O God,
the waters saw you and writhed;
the very depths were convulsed.
17 The clouds poured down water,
the skies resounded with thunder;
your arrows flashed back and forth.
18 Your thunder was heard in the whirlwind,
your lightning lit up the world;
the earth trembled and quaked.
19 Your path led through the sea,
your way through the mighty waters,
though your footprints were not seen.
20 You led your people like a flock
by the hand of Moses and Aaron.
(higlights my own)
also;
Ask, Seek, Knock
7"Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. 8For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened. 9"Which of you, if his son asks for bread, will give him a stone? 10Or if he asks for a fish, will give him a snake? 11If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him! 12So in everything, do to others what you would have them do to you, for this sums up the Law and the Prophets.
(higlights my own)
We pray that she will be comforted and at peace, without pain and suffering, and continue to trust for a complete , miraculous recovery and reversal of the current conditions and symptoms which seem to be getting worse.
Scriptures courtesy of BibleGateway.com
