It is hard to know where to start with giving an update. So much has happened since we last wrote, and many things that would have been relevant and significant to include along the way have now dropped to the side as “yesterday’s information.”
But for a start we are home. We were in the hospital for 10 days and came home this past Friday. In the hospital, after Henryk’s shunt was removed, we met with an infectious disease doctor. He told us that this is a very common bacteria effectively treated with IV antibiotics. We were able to have a surgery to put a PICC line in Henryk’s arm. This is a permanent IV so that we are able to administer the drug to him at home safely for the duration, which is until November 21. This was no small victory as there is about a 50/50 success rate in getting these lines into infant arms. Good thing we have a big boy. So, we are at home treating the infection with IV antibiotics.
While we were in the hospital, the plan was to get the infection under control with the antibiotics and then put in the next shunt before coming home. This was not possible, however, because it turns out that surgery to remove the shunt caused a quick decrease in pressure in Henryk’s brain (likely due to spinal fluid lost in surgery) which caused his brain to separate from his skull resulting in bleeding. Further surgery would have caused him to bleed more and been dangerous for him. As it was his hemoglobin swiftly dropped and some of his blood work was off. This created some daily setbacks as the journey continued.
So instead of putting in the second shunt, once things stabilized, we were able to come home. We have an appointment with our neurosurgeon on Thursday to discuss timing of the next shunt. We anticipate next week. We are apprehensive to think about going back to the hospital and scared about more surgery. Just not good memories for us although our care has been fantastic.
Now that we have had a crash course in many things bad about shunts, it has been hard not to question putting in the next one. Our infectious disease doctor is 70 years old and had an interesting perspective. This doctor, because of his years of experience, used to treat patients with hydrocephalus who were not shunted becase shunt technology had not been developed yet. He told us these children’s heads would get progressively larger, even to 120cm (Henryk’s was 53cm going in to shunt surgery). It made for hard days for them and care was “impossible.” It was interesting to hear this from someone who actually knows and has seen it, rather than merely understands the concept but has not lived the theory.
Another interesting point was from our neurosurgeon. When he came to see us he said that he was very surprised by this infection and that he had not had one in a very long time. Since he had said that multiple times before, I had to ask him to quantify “a very long time.” He said that he has not had this type of infection since 2003. 2003! He does this every day. It is clear to us that God is in control, even of bacteria, and Henryk’s unique journey continues to unfold.
So with all that said, we have been getting asked lately how we’re doing. Honestly, the answer is, “We don’t know.” It has just been so much for us. Right now, we are happy that Henryk is calming down and feeling better. We are happy to be home playing with Lily. We have no capacity other than to care for these kids and have Michael work. But for now thats where our focus needs to be. We are learning that trials produce steadfastness of faith not because you do anything specific in them but simply because at the end you still believe. You still trust God and hope in Him. That means you persevered. So we are praying for this perseverance, because that in and of itself is a grace from God. We know God is faithful, even in suffering.
Romans 5:1-5 “Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ. Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.”