Update on Joshua

Many of you have been praying for Joshua, and for that, many many thanks. Here's the latest update from my sister-in-law. She has been at CHOP with Joshua this week, while my brother is at home with the three older ones, with an assist from my mom. Joshua will likely be in the hospital for quite some time, so the family is learning how to manage this very complex care situation.

UPDATE:

Joshua is 1 month old today!!! (Yesterday was his official due date). He has lost most of the fluid and inflammation from being on the ECMO and the doctor’s think we can now observe and measure his “true” size! Joshua is 19.5 inches and 8.2 pounds. He has long legs, big feet and the longest fingers!

Joshua has had his IV and PIC line removed. This makes it much easier to change his diaper, do PT exercises, and give him snuggles! He is receiving breast milk through a feeding tube and no longer needs any supplemental nutrition. This is a big step because it means he is finally regulating his blood sugar better. He continues to rely completely on the ventilator to take breaths but has been able to maintain his oxygen saturation with minimal support. His oxygen levels frequently drop when he is agitated (he doesn’t like diaper changes or being repositioned), but we are learning what his body needs to keep his oxygen steady.

They did an ultrasound of his brain a few days ago and the impact of the brain bleed remains stable. This means that little has changed either good or bad. It could take months for his little body to reabsorb all the blood. In the meantime, the bleed has caused significant compression on the ventricles of the brain. They are watching for cerebro spinal fluid that may build up. Though, there is significantly less swelling on the brain this week.

The doctors keep saying ”we are waiting for Joshua to show us what he can do.” The doctors need to follow Joshua’s lead. But it is still believed that the damage to the brain is significant and permanent. The brain stem was most affected by the bleed (the amount of fluid caused the whole brain to shift out of place). He has yet to open his eyes and his pupils are not dilating. The doctors say it is unlikely that he will ever be able to breathe on his own because the part of the brain that communicates with the lungs is not functioning. He also has not shown any gag reflex which means he cannot protect his airway. He will likely be a candidate for a tracheostomy, but the earliest he would be stable enough for that is probably at 3 months old. We will meet with the airway response team in the coming weeks to learn more about this option.

The doctors cannot give us any clear picture of what the future will hold. He may start to develop new pathways in his brain and we may see more potential for what Joshua will be capable of doing. However, it is likely that he will not regain any additional brain function and will continue to need all the supports he is currently on.

Whether Joshua shows small signs of improvement or none at all, we are grateful that he is here with us now and responding to some stimuli (mostly in his feet and legs). We will continue to care for him and meet his needs as they are currently presented. We are learning what it looks like to care for a medically complex child with severe brain damage. But we also know that the doctors do not have the final word on Joshua’s life. We continue to entrust sweet Joshua to the Lord and pray for his healing. We will enjoy all the snuggles we can get and we will love and care for Joshua just as he is - all the while hoping (but not expecting) that we will see “happy surprises” as we move forward!

Joshua currently has a relic of Servant of God Emil Kapaun near his cradle, and a friend is sending a relic of Bl. Julia Greeley. So pick your favorite contender for canonization, and please join us in praying for this sweet boy.