|Heidi in her little hospital cot|
Today, we returned to the Brompton with a lot of trepidation and a lot of prayer. I wasn't going naively this time. I had packed Heidi and I some stuff just in case we had to stay in. I was prepared for the worst, knowing that they had said it would take 4-6 weeks for the extent of the damage done by the Kawasaki Disease to reveal itself. I knew there was a good chance her coronary arteries would have further dilated. I was desperate for her not to have to go onto a stronger drug...
We entered the Brompton, the emotions so different to last time. Last time we entered so naively... so hopeful - concerned, yes, but with NO concept of how bad things were. And then we had the shock and our world was turned upside down.
This time, I was determined to be prepared.
We went for the Echo first... the sonographer sat and looked at Heidi's heart for about 20 minutes. She was so good, lying there happily kicking her little legs, cooing and smiling. My heart was in my mouth for most of it, my eyes flitting between the screen of blurry images that meant nothing to me, and his face. Watching, desperately, for some hint of an expression that would give away what he was seeing. He gave us nothing. I preferred it that way. We left the Echo with no clue what they had found... somehow we were reassured by that.
Then onto the phlebotomist. Heidi was not feeling generous. After three disastrous attempts at getting blood out of her, a lot of needles in and out, and a lot of screaming, they gave up and went for the heel prick test. It was so distressing seeing her so upset - not even the sucrose worked for her this time. If I had had to endure this a few weeks ago, it would have killed me. Weeks in hospital of them draining more and more blood from my little girl has meant I now realise it goes with the territory. It doesn't make it any less distressing though.
Then, the wait. An ECG, a weigh-in, obs and sitting and waiting for the blood results... longing, hoping, praying that her platelet count would have come down so that she could move onto the low dose aspirin.
After a little while, one of the Doctors, who we have got to know fairly well, came to see us. She said she had glanced at the Echo report and it looked pretty similar... she would go and look at it properly now, but reassured us that no change was a good thing. I was so relieved. We had been praying things wouldn't get worse.
David nipped out to get some food, and while he was gone, the Doctor returned with Heidi's notes.
"I was wrong," she said. My heart sank. "Her coronary arteries are looking much better..."
Nearly halved in size.
Nearly halved in size?
I felt like dancing... I literally could not stop grinning... I called David and told him straight away...
"Her right artery has come down from 5mm to 3.3mmm and her left coronary circumflex has come down from 5.6mm to 3.5mm at its widest point"
|First trip on the train!|
Heidi's arteries are still twice the size they should be, but they are heading in the right direction.
We travelled home with smiles on our faces, and not even a nightmare trip across London with delays and diversions could dampen our mood. Our baby girl still needs so many prayers. We return in 4 weeks for a meeting with the consultant and another Echo. We are trying to remain realistic. This could be as much "deflating" as her arteries are prepared to do... but we can hope, and pray, that perhaps, just perhaps God might continue to do a miracle in our baby girl's heart. He has already. He is so good.
We are so very grateful.