Today we came home from the hospital! After walking in to the house and trying to settle in, the length of the week hit us and we cried for the first time since surgery. This week was a necessary hardship. We did not realize how altered Henryk would be from surgery or how tough it would be on him. That’s probably good though because the decision to do it would have been the same.

We were given immediate confirmation of that in the test they did for debris in Henryk’s spinal fluid, which they drew during surgery. It was within range of normal!! Truly a miracle. We were overwhelmed when we heard. When he was born the number was 4x what is was on Monday, and that was before the hydrocephalus even developed. This indicates two things. One is that the damage to his brain has probably finally stopped and the body is clearing the debris. Two is that the shunt will not be any more likely to plug than a normal person’s would.

It is difficult to see him so tender and fragile. He has a lot if reason for discomfort – head incision, valve placement, tube down his body, incision in his abdomen, change in pressure, dizziness, nausea, constipation – but we are working through it and getting better. The neurosurgeon says that everything we are seeing in Henryk is expected. He will be more comfortable without the pressure. We can actually see it in his eyes – they are not so wide open all the time as they were. His head is significantly smaller, however along with that comes a very large and sunken soft spot, and overriding of the bones in his skull that were so split before. We will get used to it.

You don’t have to know us well to know that we love to plan. Really love it. We love working out details and thinking thoroughly and coming up with a trajectory that makes the most sense for everybody. When we learned about Henryk at Easter, we were put in a new place of not being able to make everything fit together, also known as a place of having to walk by faith. God is revealing His plan for us as we go. This is not a harsh or objective thing for Him to do. He is not a bystander in this. Although God is putting us in a whirlwind, He is giving us the gift of confirmation and confidence in it. He is kindly answering prayer even while allowing these hardships. This has brought us to a new level of falling on our knees to bend to God’s will in our lives. He will not break us. He is here through the storm making us pliable through the wind and hail. We pray for His provision in the future years of living this stooped-over life.  He knows what He is doing, and that’s enough for us.

Henryk getting his Pre-Op CT scan taken care of last Friday, which was done so that the neurosurgeon knew where to place the shunt.

Emily with Henryk in Pre-Op getting once last snuggle in before the surgery.

Henryk being wheeled off to surgery.

Henryk recovering from major surgery

It was nice to get Henryk home. The staff on 6th Floor at Children’s has been amazing. Both our visit in August and this one found us on the 6th floor and both times we have built great connections with the staff. We even got to see some of the same nurses! If you want, compare pictures with the “blue hat” between this one and those we took on Sunday. We saw the most noticeable difference in how Henryk’s head filled his hats.

Our little buddy. Lily is so excited to see him. She is still with Ben and Ann during this transition phase home.

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