We’ve been waiting to hear back from the hospital for two months, since our son had a CT scan.
Yesterday we received the letter.
The letter to tell us that our little one is now on the Cardiac Surgical Waiting List. We have an appointment with the Pre Assessment Clinic next week, where they will discuss all the details of the surgery and the risks.
That’s triggering of all the memories where we sat down to discuss those the last time.
When we spoke to the cardiac liason nurse, we asked about the priority our son has for surgery. She told us he is priority 4 which mean’s surgery could happen in 3-12 months time, but it doesn’t mean it couldn’t also happen in the next 3 months! It all depends on the waiting list.
How do you wait that long knowing you need to continue protecting your baby from viruses, that you can’t really make plans as you never know when that call will come, knowing that even a holiday especially if it involves flying comes with risks?
Waiting is hard and I feel like we are living on the edge, waiting for the post, waiting for the call. We have gone from being told in December that surgery may be in March to now being told that it could be anytime in the next year.
Some might think this is great news, and to an extent it absolutely is as we don’t want him to have surgery at all! But it also means that the season of him being vulnerable and needing protecting from viruses continues, which I personally find hard and isolating. His oxygen saturations are currently sitting around 77 at the moment, (a healthy baby would be 95-98), which just seems crazy that he will need to keep operating with those levels when he is so active. Believe me when I say, he doesn’t stop!
Since receiving the letter we have both felt exhausted. It is really strange how PTSD can affect your body. It’s like a weight that sits on you, always there, even when people think you are fine, its just hovering.
At the start of the week I felt in my spirit that we would hear from them this week and I told my husband that on Monday. I don’t know why because we have been waiting for two months to hear back from them, but we have been praying. We are always praying. Seeking God in all of this.
We have always prayed for God’s timing, and believing that maybe the delays are being used for his purposes. We continue to pray for His timing, and his strength as we wait.
As we wait.
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