Tuesday, September 14, 2010

New Doctor: Pediatric Neuro-Surgeon

Today we went down to Riley's Childrens Hospital to meet with a Pediatric Neuro-Surgeon that we will nickname Dr. Positive. I was very pleased with how our meeting went. We were the last appointment of the day, there was no rush, she answered our questions in much detail and she was very honest and practical about Myra's situation.

I was planning on leaving this meeting discouraged. Leaving with them telling me that Myra's brain/head will not grow and there was no reason for us to hope that, that will change.

I was pleasantly surprised. Yet another push, I feel from God, that we should not be discouraged and plug on. Maybe even if the doctors had told us bad news, I should still remain positive, hopeful and completely faithful. But honestly, in the face of such negativity, some days that is really hard. And, though I cling to the fact that my God is the greatest power above all else, I know that He may or may not choose to heal Myra in the physical way I would want. So, any good news is music to my ears.

In case you do not understand Myra's current condition, she had severe mircocephaly or "small head" and her head has only grown 1cm since birth because of her traumatic brain injury. Her sutures, or spaces between the bony plates of the head, have all begun to fuse together because there has not been enough brain growth to put pressure on the plates to move and grow apart. If the sutures fuse completely, her head will never be larger than 14cm around, even at 10 or 20 years old. And we have been told that she would not likely live that long, either. So, out of concern that her brain will grow even though the doctors predict it won't (our God can do anything!) potentially causing more brain damage and the concern for facial deformations as she grows larger, we have asked to talk to another specialist who could actually perform this type of surgery. We have been told by many professionals that our requests will not be met.

So, basically Dr. Positive explained that she partners with a plastic surgeon to do facial reconstruction surgeries. She makes the opening, cuts the bones apart and the plastic surgeon puts the pieces back together. She said that she can open up any head, but the surgeon cannot put back together any head. Therefore, it is a duel decision for this type of surgery to be done. And there are certain criteria that have to be met in order for them to even consider doing the surgery. They will not do this surgery just to make the child look better. It's too risky of a surgery.

So, criteria A is increased pressure on the brain. Since Myra does not have a soft spot, an ophthamologist looks into the back of the eye to determine pressure. Indicators of this would be lethargy and/or extreme fussiness that cannot be consoled. In March she did not have increased pressure, but they will check again in March of 2011 unless we have concerns before then. With the amount of brain matter than Myra lost during labor and delivery, we have been told she has plenty of room in her small head for the good parts of her brain to continue to grow and therefore it will take a long time for her brain to put pressure on the bony plates and make them move. But, Dr. Positive told us that she has seen even the brain fluids put pressure on the skull and make the head grow. And, she said that since Myra's sutures are not completely fused, her head can STILL grow! That is great news for us! So, though pressure is unlikely to happen any time soon, it's criteria A.

Criteria B is, if we requested this surgery outside of increased brain pressure, both doctors would have to have indicators that Myra's brain has good potential for growth. Meaning, she will have to be developing neurologically, hitting milestones, learning new things fairly regularly for them to believe her brain is growing and maturing. The reason why is because if they did this surgery and her brain did not grow after the surgery, the bones could collapse into a worse position than they had been before and the surgery will be null and void. The benefits of the surgery will always have to outweigh the risks. And, it's not an easy surgery, it's not a fast surgery (8-10hrs) and it's not a low risk surgery. Also, there will be a large part of her brain exposed after surgery that they wouldn't be able to cover for years afterward. Huge risks. This is likely where Myra's potential for surgery will fall. First, we have to want this risky surgery, the doctors have to approve it and Myra's has to be healthy enough for it.

Therefore, we are a long way off from this kind of surgery. The doctors want a good amount of time to determine potential for brain growth and Myra's immune system will continue to be suppressed from her ACTH treatment for another 9 month minimum. So, we plan to meet with the plastic surgeon and Dr. Positive again in 6 months and talk more. Also, Myra is very petite and she said it would be quite difficult and risky to do this surgery on her because the small amount of skin to work with to cover a reconstruction and the small amount of blood circulating in her body (she would definitely have a blood transfusion - which could be donated by us, pretty cool!). So, the plastic surgeon could refused to do the surgery under criteria B because of the risks and only operate under criteria A.

I just have to believe that God's hand will guide all this. I did not want the g-tube/nissen surgery when Myra was only 3 weeks old. I knew she would nurse even though they told me she probably never would and I wanted to wait another week for her to try nursing and the bottle. But, she ended up getting the surgery at the very strong recommendations of all the NICU doctors (you definitely don't have the control and freedom of decisions in that environment like you do outside those walls). But, the g-tube has proven over and over again to have helped her in time of need. Though she did starting nursing full-time before we even left the NICU (praise God!), she wouldn't take her medications orally for the first 4 months she was home, she stopped eating when she was in the hospital with Rotavirus at 8 months after she became dehydrated and now we have to supplement her with fortified breastmilk to help her gain weight. Though I don't like the scar on her tummy, the weird tube that sticks out and leaks on her onesies or the pain she had after surgery for over 15 hours, God allowed Myra to get this g-tube knowing that it was what was best for her. Knowing her future. Know what I did not know. And, I still don't know what the future holds. So, I will wait for God's lead. Maybe not always patiently or cheerfully or without the pain of a mother's heart, but I will wait. Knowing that only He knows what is best.

This verse has been shared with me at least 3 times in the last two weeks through different venues:

"Whether you turn to the right or to the left, your ears will hear a voice behind you, saying, 'This is the way; walk in it.'" Isaiah 30:21

And I love this verse:

"Trust in the LORD with all your heart
and lean not on your own understanding;
In all your ways acknowledge him,
and he will make your paths straight." Proverbs 3:5-6

What more do I have left to do but trust the God of the heavens and the earth?

Thank you to all of you who are committed to praying for Myra and our family. I feel those prayers and I pray you, too, are being blessed by your faithfulness.


Positive Parenting 365 said...

Praying, praying, praying.

Shanna said...

We are definitely being blessed by your faithfulness and we are absolutely still praying!