The Black and White Decision

We’ve been seeing a lot of specialists for the kids, trying to get a baseline for all the various medical stuff we have on board.  So far, all the medical recommendations have been in a comfortable gray zone. This or that surgery may be beneficial eventually, but it’s not a life or death deadline.  We could try stopping a medication to see if it is actually necessary, if nothing happens then that medication was slapped on to that child’s file back in the orphanage without appropriate measures to make sure they actually had that condition, but we don’t need to stop the medication today or tomorrow, it can wait.

I’ve appreciated all the doctors who have that helpful curiosity about a child’s well-being. Up until last week everyone, except the orthopedist (who literally said “tough luck” when I shared that it is her dream is to walk someday), has looked at all the possibilities, given clear reasons for possible next actions, and concluded their consults with recommendations for follow ups in a couple months when we will see how the kids are doing.

But last week Angelina had a neuro-surgery appointment to check on her shunt which she needs to maintain the pressure in her brain due to hydrocephalus.  They took a couple xrays to determine what kind of shunt she had and if she was safe to go in an MRI machine, after the xrays got the a-okay she had a quick brain MRI (thankfully not sedated) and then we went and met the team.  We’ve already been through all this with Roman, he got the all clear on everything and he won’t need to be seen again until next year.

This time around the dr. started with good news, Angelina’s shunt is working, and then ended with the not so great news, although her shunt is working, she has run out of any room to grow.  I could see the decision there, in black and white, right on her xrays.   He recommended a shunt revision surgery as soon as possible.  He described it as “this isn’t an ‘if her shunt fails’ scenario, this is a ‘when’ and the when could be any day now that she is in a better environment for growth. It’s best to have a scheduled surgery now than wait for an emergency that could happen anytime.” His PA gave me a follow-up call just a couple hours after the appointment to get the ball rolling.  Angelina is now scheduled for shunt revision surgery this coming Monday, just four days away.

Yesterday I got the call from a pre-op nurse who gave me a breakdown of what to do for Angelina before this surgery and what recovery should hopefully look like. This will be an inpatient procedure with an overnight stay for observation, if all goes well we will be discharged the next day.  She asked if there was anything specific I wanted them to know and suddenly my calm collected mind was flooded with all the details we’ve learned about Angelina, how she is scared of flying objects, how she doesn’t like milk or oatmeal but loves dry cereal and chocolate milk, and how quickly she can dissociate when scared or in pain.  I took a steadying breath, organized my thoughts for what the team needs to know, and said “we’ll need a translator before and after surgery to help ground her and reinforce that she is not being abandoned again, the nurses will need to stay on top of her pain meds because of her background she will try to hide pain since it’s a sign of weakness and she won’t trust you, she probably won’t be combative but she will be really scared. can i stay in her room overnight?”  The nurse on the line was quiet for a moment, probably jotting down the notes, and then she said “right, I’ll make sure there is a translator, we will stay on top of her pain meds, i’m sure it will be pretty overwhelming for her, you can stay with her overnight. you are doing a good job mom.”  Gosh I love competent nurses who communicate, you guys are the best!

God in his grace has kept Angelina safe all these years with this one shunt, as far as we know she’s never had a revision before.  Angelina is very short for her age and for various reasons we suspect she may not grow much more; an average 9 year old would have outgrown this shunt length and either been rushed in for emergency surgery or died from pressure in the brain before the orphanage nannies reacted to any symptoms.  This is the third appointment with a specialist when we’ve learned that a medical condition, though seeming to be an inconvenience or even deterrent for independence, has in fact been a key part of keeping Angelina alive and without long-term or even deadly internal damage.  Act of God? Yes.

Please keep our family in your prayers.  This surgery should be fairly quick and the recovery should be relatively fast as well, but there are still so many unknowns.  My husband will use his one day off a week to hold down the fort at home with 3 littles while I stay with Angelina at the hospital 2 hours away.  Please pray for Angelina that she may stay resilient and trusting during this time, we have all been making so much progress as a family the past few weeks; we anticipate there will be some regression on attachment and trust after the surgery because it will throw such a curve ball into our very consistent routine which Angelina has come to rely on.

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7 comments on “The Black and White Decision

  1. You asked some great questions and pointed out some very important things that will help Angelina during the hospital stay. I want to suggest that you make arrangements to go into the OR with her until she’s asleep. And, request to be in the Recovery Room when/before she opens her eyes. They may fuss a bit, but let your Mama-Bear come out and hey will bend to the requests. Having you there at both times is comforting and will help her see that Mama is there to watch out for her. And, Yes, insist they stay on top of the pain meds, even if it means setting a timer so they have it ready to give right when it’s time. As a former Pediatric RN, I can tell you that Kiddo’s are under-medicated for pain and anxiety. They would never let an adult go through some of the same things that little ones have to endure. I fought many battles with and for parents who were too afraid to ask. I’ll be praying for Angelina and you at the hospital and for those back at home. Hugs – Jo

  2. Lord, to whom shall we go? You have the words of eternal life. John 6:68 Yes, trusting in the Lord for Angelina and you and your family.

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