This post will be brief, but after you read it, if you are able, please pray for Jude, as his situation has taken a turn for the worse.
I was alone when I walked into the NICU this morning, and it's the Lord's mercy that Rose wasn't with me because Jude didn't look good. He was very pale and just appeared to be ailing, which was a sharp contrast to his appearance over the last few days in which we had looked forward to him coming off ECMO. Cardiology was just finishing an echocardiogram that never really got started in the way that it had originally been planned, because the staff discovered that Jude has bilateral pleural effusion, or fluid on both of his lungs. This fluid is exerting pressure on his heart, and, in light of this discovery, the staff stopped short of clamping Jude off from the machine for the duration of the echo as they had originally planned.
After talking to Jude's doctors and nurse, I learned that they are sufficiently concerned about his fluid on his lungs that they are now asking our pediatric surgeon if he would be willing to put in a chest tube to directly remove the fluid. This is a much more invasive approach than the staff have wanted to risk before, particularly in light of the fact that he's on a blood thinner, but apparently they think that its potential benefits now outweigh its risks.
Also, much to my disappointment, we learned this morning that Jude's ECMO circuit has enough clotting in the tubes and in the oxygenator that the staff now think it is best to change out the circuit entirely. When Rose and I have asked about changing out the circuit before and the circumstances in which that is done, we were told that it was generally avoided at all costs, as it can be something of a shock to the patient and carries risks and potential consequences (just as every measure seemingly does). After being under the impression that Jude's ECMO circuit was generally clear of clotting (notwithstanding some small signs that clots were beginning to form), learning this morning that the circuit will now probably be changed out completely was very hard to hear.
I have to be honest: Hearing all of this news and seeing Jude look so pitiful was devastating. Every part of me wanted to scoop up my child and embrace him, even though I knew that won't change anything. I had to leave; I had to get out of the NICU. Rose and I just feel wrung out, and although we hope and pray that Jude's journey will continue such that we're in this for the long haul, the weight of it is grinding us down. We need God's mercy, and we pray for his mercy for Jude in particular, that He would foster healing in his little body.
Even as we're struggling with this emotional roller coaster, we still know that Lord is compassionate and that he has been, is, and will be merciful beyond our deserving. And we know He is with us. Please join us not only in crying out to Him for His mercy and healing for Jude, but please join us in praising Him and giving thanks, because He is good. He's more powerful and more loving than any of us can fathom, and ultimately only He can heal Jude and afford the rest of us the peace that surpasses all understanding in the midst of such trials.
I'll update you all as we learn more throughout the day. Thank you for your love and your prayers.
And behold, I am with you always, to the end of the age.”