The last few weeks have been somewhat of a new roller coaster in our caring for Henryk. Two and a half weeks ago we took Henryk to the pediatrician for the normal 2 month check up and immunizations. The pediatrician was quite surprised at Henryk’s continuing ability to function on his own. He said although he didn’t think anything would change as far as our plan of caring for Henryk goes, he recommended we to see our neurologist.
Last Thursday was our appointment with the neurologist. He agreed that Henryk is functioning well and passes their neurological exam better than expected. Although his eyes do not focus and we do not believe he will be able to see, he can still react to light, he hears and reacts to voices, moves all extremities with appropriate tone, and has reflexes. He cannot move his head but that is due to its very large size. He told us that now that Henryk has lived this long, he believes it could go on for a long time, even potentially years of life. What was sobering is that he didn’t say this in a happy way. It was a very somber statement because he also believes it will be impossible for Henryk to develop any further than he has now developed. He then said that we should re-open the possibility of a shunt, so he recommended us to see the neurosurgeon again.
Today we went to see our neurosurgeon. Basically, the doctors thought that Henryk would have died by now or be more close to dying at this point. Since he isn’t, the neurosurgeon agreed with the neurologist’s opinion that Henryk’s body may continue to keep going and going and live for multiple years. As he put it, the brain is not essential to surviving, only the brain stem is. So although Henryk basically has no brain, he has a brain stem that is still working. It is the only part of his brain not totally devastated by whatever trauma he endured.
The neurosurgeon said that based on the fact that he may live for years, it also means that Henryk’s head will continue to grow. It will not stop filling with spinal fluid. It grew 2 cm in the past week. This will make caring for Henryk incredibly challenging, even to the point of being unable to move and hold him. For this reason the neurosurgeon also believes that we now need to do the shunt.
This is a confusing state. All we wanted was more time with Henryk. But now that we might have it we are put in a position to do a surgery that will have many complications. The infection rate for this surgery is astronomical. Also, the reason we did not do the shunt initially is still present, which is that he most likely still has debris of floating blood product and brain tissue in the fluid that the shunt will remove, which will cause the shunt to plug, requiring more surgery to fix it.
Two months ago, when we thought Henryk didn’t have more than a year to live, not doing the shunt was considered the best thing for his quality of life – no repeated surgeries. But now, keeping potentially 2 years or more in mind, doing the shunt will most likely bring him a higher quality of life, in that it will keep his head to a size that allows us to hold him. But it still does mean all of the risks that it meant 2 months ago.
Doing the shunt will not change however long Henryk lives. It also will not allow him to function any differently. It is doing nothing but taking the fluid away from his brain and therefore keeping his head at a manageable size.
We are exhausted and feeling numb. The last two months have been so hard in digesting the state of his brain and preparing for him to pass. Now we have more hardship with the looming potential complications to the shunt. We are weary but praying for peace that we know God will give.
The book of James chapter 1 verses 2-6 has been helpful. First it talks about when we meet trials of various kinds. It encourages us to consider all of the joy available to us in the gospel when we fall into these difficulties. To remember Jesus and his work to save and redeem us is to consider joy. Then it goes right on to discuss wisdom. We feel as though we need Gods wisdom in caring for Henryk. James says that if we ask in faith for wisdom, without doubting, God will provide it to us. We know that in the wisdom he provides, he will also give peace for the future, reminding us that the decision was made in communion with Him. He will give us wisdom to accept that there was no third option, that there was no good option. And we know that peace comes from trusting in Jesus and his finished work on the cross.
Henryk’s surgery is scheduled for Monday at 3pm. We check in at 1:30. We will stay for at least two nights. Tomorrow (Friday) we have a CT scan of his brain at 7:15am and a pre-op physical at 1pm. Henryk’s open house is still on Sunday at 3pm at Bethlehem. Next week Lily will be in Wisconsin with her grandparents. We are specifically not telling her what is happening this time around. She often worries about her parents. She is so wonderful.
He has made my teeth grind on gravel, and made me cower in ashes; my soul is bereft of peace; I have forgotten what happiness is; so I say, “My endurance has perished; so has my hope from the Lord.” Remember my affliction and my wanderings, the wormwood and the gal! My soul remembers it continually and is bowed down within me. But this I call to mind, and therefore I have hope: The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness. “The Lord is my portion,” says my soul, “therefore I will hope in him.” The Lord is good to those who wait for him, to the soul who seeks him. It is good that one should wait quietly for the salvation of the Lord.