It’s another busy day here at Sick Kids, and it’s hard to believe that we have been here for 6 weeks! The time has flown, probably because the days here are so busy. Take for instance today, we have already had a visit from the dietician , a visit from the occupational therapist (and she is coming back at 4 today), two visits from genetics, one visit from someone doing a research study, our daily check-over by our nurse practitioner, a quick visit with a cardiologist, rounds of course came by this morning where they do their daily chat about Ava and that’s not including the nurse popping in every so often and it’s only 2:00 pm!
Yesterday was kinda more of the same, but it had a funny start to it. I had been up late with Ava the night before as her tummy was hurting her and then I was up a few times with her again in the night so I was so tired yesterday morning that I didn’t get up when my alarm went off at seven. And even though I like to up and be ready to meet the day shift nurse, I didn’t worry because I thought I would wake up when he or she popped their head in the door around 8:00 – except I must have slept through that too.
So I was still sound asleep at 8:15 when in through my door burst the Orthopedic doctor and the resident! I sure woke up in a hurry, and made an attempt to gather some dignity and look alive and alert as I listened to their findings with my foggy morning brain.
But I’m pleased to say that they only had good news. Based on Ava’s x-ray of her legs and hips and after their assessment of her, they didn’t find anything clinically wrong with her. They did see evidence on the x-ray of some previous interruption of Ava’s bone growth, but things are growing well now and she is healing. She also had an ultra-sound of her hips done yesterday and it was perfectly normal so that was encouraging. I know that Ava still doesn’t like being moved and complains at diaper changes but as my mom pointed out, she’s probably just sensitive all over , and I just noticed the discomfort of her legs more because that’s the only part of her that was being moved fairly consistently. But the bone people will follow her up in 3 months just to make sure.
And then because of her Turners Syndrome, genetics has also gotten involved. They also saw some things on the x-rays that made them curious, so they will also be following up with Ava in another 6 months to see if these things are resolved or need to be looked at. And when I was talking to them they agreed to another blood test on Ava to determine her Karyotype for Turners – this test will take 6 weeks to get results and I’m really pleased as it should give us some more information on what to expect with Ava in the long run.
So that is that… but we are still here at the hospital with no plans on leaving anytime soon. The biggest thing that has everyone concerned right now is Ava’s oxygen saturation levels in her blood. A healthy person has 100% oxygen saturation in their blood and you need that to live, but thankfully babies don’t have to be 100% and with Ava’s physiology, they would like her to be in the low 80’s. Because of her single ventricle heart, and how the Norwood surgery works – her lungs kinda steal blood that is being sent to other parts of her body. So when her saturations are high, that means that oxygenated blood is shunting back to her lungs instead of going out to her body and that’s not a good thing. It could also mean that her heart has to work too hard. So tomorrow Ava is getting another echo-cardiogram to compare with her January 2nd echo to see what exactly is going on and if her heart function is decreasing or not. I hope not! Oh I hope not, we just want to go home.
But God still has a plan. It’s cool today because when I was talking to genetics, the Doctor asked how I could seem so relaxed and calm with all we are going through, and I could reply without hesitation that it was our faith in God. My soul definitely has grown weary through this long journey, but God is in the process of restoring me which I’m so thankful for. I’ve been doing a devotional I found online called “15 Days in the Word with John Piper” and even though I think that I just found it, I know that God led me too it. The verse yesterday was this…
22 Cast your burden on the Lord,
and he will sustain you;
he will never permit
the righteous to be moved.
I think when the journey is long, it wears you down. But then I look back and I can rejoice at what God has done so far and how He has sustained us. And looking ahead, even though we aren’t where we would choose to be, and even though things aren’t necessarily going the way we want them too, I’m still excited to see what He is going to do.
Thanks again for your prayers, God is still at work!