“No one else will ever know the strength of my love for you. After all, you’re the only one who knows what my heart sounds like from the inside.” ~unknown
I’m finally finding the energy to post an update since Chance’s 11th surgery. The last week and a half has been beyond draining. We’re still in the hospital as I share this update but we just received word from the doctor that we’ll be discharged today.
Chance’s 11th surgery went well. Thursday was a challenging day. It was one we looked forward to so we could move on. Yet it was also one we were fearful of given how many issues we’ve had with shunts. But Chance that morning started the day in a pretty good mood…sure seems like he’s saying “let’s do this”.
It took more work to distract him and keep him occupied as we waited for his surgery time.
From 4am on that day I couldn’t feed him and by around 10am they clamped his EVD that was draining the fluid in his head. Within an hour of clamping his EVD he became irritable.
Here Chance is in some of the final moments before we left his room and headed up to the post-op area.
I recall feeling a bit more nervous as the time came closer to his surgery and admiring the light shining down on him. Everyone keeps telling us to pray “this is it” and that he won’t require any additional surgeries. I’m not so sure how many more prayers God needs because I know we have so many others also praying for my baby boy. As we all look upward I suppose I should remind myself to keep praying and find it in myself to trust and not doubt what is planned for my baby boy.
Jason arrived just before we headed up to the post-op area. It made Chance’s day to see his daddy. Our family has been divided as he’s been caring for the kids and resuming work so I admire these moments that much more when they happen.
Yes, Chance has lots of people praying for him. Even all his doctors. This is my child so of course he hasn’t taken the simple route to life or recovering. He likes to keep his doctors on their toes and with as much as they have touched our lives we know Chance has somehow managed to steal a piece of their hearts too.
Here Chance was resting just before his 11th surgery. Eleven surgeries later and it never gets easier letting go of my baby boy when they take him off to surgery.
After surgery he was so tired. Aside from feedings he slept virtually all evening and the remainder of the night.
Even majority of yesterday he rested. Given all he had been through the doctor wanted him to stay an additional day just to keep an eye on him.
The back of my baby boy’s head looks awful. He now has six scars, four of which are still new wounds. I took this photo at first without the intent of sharing it and then I got to thinking…I’m going to have to take my baby boy out and about before long and it’s going to be inevitable…people will see his head. Just a couple of weeks before this round of surgeries I had gotten questions from people curious of what happened to his head. I can only imagine how many questions that might come now. I have this feeling that once they heal good he’ll be wearing hats this winter until his little head heals more and his hair grows.
Yesterday was the first time in a week and a half that Chance went wireless. For the last week and a half he’s had all his wires, including the EVD connected which confined him to being within a foot or two of his hospital crib. It’s a liberating feeling being able to roam around without those darn wires…so we celebrated by taking a photo.
Thank you all again for the continued prayers & support as we’ve spent all this time in the hospital watching our baby boy go through so much. I promise the next update will be from home…and that should make us all smile!
by Amanda Kern
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