Once again, thank-you to everyone for your prayers and support right now. And we also wanted to shout out a huge thanks to Jason’s sister Lija’s co-workers at the London Courthouse… they had a fundraiser to help us out with staying at the Ronald MacDonald house and we were super blessed! !!!! Thanks guys!! We were really very honoured and the money will be a huge help, so thank-you. There have also been others who have contributed financially to our journey along the way and we are so grateful. It’s humbling to be at the receiving end but we accept it all graciously for Ava’s sake, it’s all for our sweet baby.
And that sweet baby does seem to be a bit better. It’s crazy that they still don’t have any things conclusively wrong with her – in terms of infection that is. Clearly her biggest problem right now is her her terribly functioning heart, and so any infection, or even a cold or stress just escalates things to a point that almost tips Ava over the edge, as her Doctor’s so nicely put it.
Wednesday morning things seemed very dire and the outlook for Ava did not look good at all. She had spiked a fever of 41 degrees and her heart-rate was over 200 beats per minute and there was no way her heart was going to be able to sustain that rate for very long. They had to start Ava on CPAP to take some of the pressure off of her heart (it’s a mask on her face that forces pressurized air into her lungs). Unfortunately, but not surprisingly she HATES it so she has had to be sedated since yesterday morning so as not to upset her too much. Yesterday they also put Ava on a cooling mat that seemed freezing to me, but thankfully she tolerated it and it brought her temp right down which helped bring down her heart-rate as well. They also increased her heart med – milrinone – to the highest dose to help her heart but that is only supposed to be a temporary measure and they plan on weaning that back to the middle dose that she was on earlier this week. She’s also on a low but constant infusion of morphine to help keep her calm and to keep any pain away.
But as of today her heart rate is back in the normal range and Tylenol seems to be keeping any fevers at bay. She came off the CPAP for a few hours this afternoon, and then again tonight. Tonight when she came off of CPAP, they had left the sedation wear off so I cuddled her and then when she had enough I put her in her chair, and she was actually bright and alert for about 15 minutes. But she wouldn’t smile. If Jason had been there she would have smiled as she always smiles for daddy, but she was being stingy with me. 🙂
She’s kinda puffy still as she is retaining some fluid – always the fluid – and still really sleepy. But at this point things are looking like she will be staying this side of the cliff that she seems to live way to close to the edge of… and I’m glad because each of these episodes seem to age me 10 year at a time.
In all of this we are so grateful to all the dr’s and nurses who have been so kind and caring. One of our nurses who is also a believer painted the verse for Ava from my last post on a little plaque that now sits in her crib, and one of the residents who had seen that verse came by and shared she was also a Christ follower and prayed for Ava today which was so encouraging. And both of our parents dropped everything to come down yesterday to be with us and that was so kind and the kids seem to be handling this OK as well.
And our biggest thanks is to God – our refuge and our fortress in times like these. He alone gives us the strength day by day…
1 He who dwells in the shelter of the Most High
will abide in the shadow of the Almighty.
2 I will say to the Lord, “My refuge and my fortress,
my God, in whom I trust.”