surgery!??!

Yesterday we had a care conference with the neonatologist in charge of Malachi's care currently at Riley. Malachi's prognosis looked very grim and this was the first time that the staff conveyed that they weren't exactly optimistic about Chi's outlook. John and I have been forced to look at the big picture and search Scripture for answers that we never thought we would have to face as parents--those being life support-type issues and what the Bible says regarding infants going to heaven. Not easy stuff to digest, nor find conclusive black and white answers. We know that we will need to seek God and make decisions based on what will glorify Him with the information that we have been given--through His Word and from the medical staff who know him best.

When we left our meeting yesterday, it seemed as if heart surgery was his only option. We were told that Malachi's heart surgeon would evaluate him to see if he would even tolerate surgery in his weakened condition. We were under the impression that he would need his permanent fix (Rastelli procedure--the one that should last 5 to 10 years) and it would be EXTREMELY risky to try this operation now. So John and I had to visit and discuss things unimaginable to most parents. So, we prayed.

I did not want to be at the hospital by myself today, not knowing how these next few days will unravel. I don't even know if John has accrued enough sick time or medical leave to allow us to do that and still get paid, but his presence there with me was definitely worth more than a day's salary. Thankfully, we have been putting monetary gifts in a reserve fund to use for such occasions, so thank you for letting me have my husband by my side today and most likely the rest of the week. Well, after stopping at the church to talk with our pastor, we made our way to the hospital. It wasn't until about 45 min to an hour after we arrived that we were told Malachi is scheduled for surgery. Seriously?!?! We thought he wasn't ready. After a couple weeks of watching our son deteriorate, this was something tangible.

Instead of doing the permanent fix (5-10 year fix), they are going to do a Blalock Taussig procedure--placing ANOTHER shunt to provide more bloodflow to the lungs; in theory, this would mean greater oxygen saturation throughout his body. This is only a temporary fix. This will hopefully buy us enough time to help him grow and stabilize before the Rastelli procedure. There is no 100% guarantee that this will help his current medical status, but we owe it to Malachi to move forward with this shunt and see if it will help. The outcome of this surgery will weigh heavily on any future decisions regarding Malachi's care. Please pray that this greatly improves his oxygen saturation levels.

Through the night shift last night, Malachi did have some desat episodes into the 30s which required him to be "bagged" in order to bring his sat levels back up. Also, this morning, he had an episode where he dropped into the teens and also had to be "bagged." As you can see, giving Malachi time isn't doing him any good. Something in his plan of care needed to be changed, and that something is tomorrow's surgery. Pray. Pray. Pray to the One who is in control of all things. To Him be the glory.