Tuesday, April 3, 2012

"I wish I could tell you everything will be OK..."

Lest the title of this post totally totally mislead you, reader, please know on the front end of this post that Jude is stable and OK, relatively speaking. His condition hasn't really changed since our last post on Sunday: He's still on Vapotherm, but he's at risk for being re-intubated, as he has high levels of carbon dioxide in his blood, per the most recent blood gas analyses. We're hoping that his respiratory status will improve as he recovers from his cold over the next few days.

Despite there being no major changes to Jude's condition at the moment, Rose and I were jostled again yesterday.

Before Jude was born, based on what others had told us about having a child with CDH, we knew that his course of care would likely be complicated and that we as his parents would, in turn, ride something of an emotional roller coaster. But, of course, grasping something like that intellectually never prepares you for the experience of it.

Late yesterday morning, Rose and I sat down in the NICU conference room for daily rounds with the doctors and other staff taking care of him. We were subsequently informed that Dr. Hebra wouldn't be available to meet with us later in the afternoon for the previously planned care conference about Jude, but the attending physician informing us of this didn't know why he wouldn't be able to attend. Before Rose and I really had the opportunity to experience the letdown of this news and before any alternative meeting time could be brokered, Dr. Hebra rounded the corner into the conference room and took a seat at the table. We breathed a sigh of relief and were glad that we would get to have a conference after all, even if it was more of an impromptu one. I won't be able to do justice to all that was said over the next 25 or 30 minutes, but I'll do my best to recap the gist of the discussion.

Dr. Hebra began by quickly recapping Jude's course of care since the beginning. He conceded that because of the severity of Jude's defect (i.e. his hernia and what it caused) and the events that occurred while he was on ECMO (particularly the UVC leak and the resultant sepsis), he thought it was a miracle that he even came off of ECMO. (When a physician, let alone the chief of the pediatric surgery division, uses the word "miracle" when talking about your child, it has a certain impact.)

Then, he spoke briefly about what he discovered in Jude's body when he performed his first hernia repair surgery in January. In short, the surgery was very risky, and Jude could have died during the procedure. The abdominal infection that was rife in Jude's abdomen and chest cavities after his UVC leak left a lasting impact: Jude's insides, particularly his abdomen, were laced with adhesions, or bands of scar tissue. Jude's bowel was so matted and fused together with this scar tissue that Dr. Hebra, when I asked him questions in order to visualize what it looked like, described it as looking similar to a piece of raw meat. Moreover, Jude still had considerable amounts of infection in the peritoneal and pleural spaces of his abdomen and chest, which would later warrant nearly a month of targeted antibiotics to clear up. Despite all of these problems, Dr. Hebra was able to move the abdominal organs in Jude's chest at that time (bowel, part of the liver) back down to his abdomen and tenuously secure a biological AlloDerm patch to Jude's chest wall, thereby closing the hernia.

The AlloDerm patch was specifically chosen and necessary because Jude had still had infection in his body; however, the drawback to that kind of patch/mesh (as opposed to other patches/meshes) is that it is made of a biological material and will eventually break down and be absorbed into the body. The hope that we all harbored was that scar tissue would form over the surface of the patch, creating a de facto diaphragm or barrier between the chest and abdominal spaces. We all knew that reherniation, or the recurrence of a hole in Jude's diaphragm at the location of the patch, was likely, particularly with the passage of time. No one, however, was expecting the reherniation to occur so quickly.

Dr. Hebra then reiterated his plan for Jude: He wants to give him good nutrition and delay the surgery for a few weeks. For the moment, of course, Jude's rhinovirus (i.e. his cold) would rule him out as a surgical candidate anyways, unless surgery needed to be done in an emergency. But, beyond recuperating from his cold, Jude needs as much time as he can to grow, get good nutrition (hopefully from breast milk), and optimize his health before undergoing surgery again. Normally, if a child with Jude's condition were to reherniate but tolerate it reasonably well, then a surgeon might be inclined to wait quite some time to surgically repair the hernia. If Jude were such a child, then he might be a year old before his hernia would be repaired again. But, alas, Jude is not that child.

(Everything I've written up to this point is information that Rose and I already knew, even though my explanation of Dr. Hebra's logic for delaying surgery in the paragraph above is a gross oversimplification, at best. I'm going to try, in what follows, to sum up the rest of the conversation, although the impact of what was said probably skewed my perception of things a bit.)

It was at this point in the conversation that Dr. Hebra became a bit more sober in his expression. After concluding his recap of Jude's case and the plan for his care, he then went on to speak briefly about his prognosis.

When Dr. Hebra attempts the second hernia repair, he will probably enter through the chest alone instead of through both the chest and abdomen, as he did the first time. He expects there to be so much scar tissue in the abdomen that it would be difficult or problematic to try and gain access from that point. Entering solely through the chest, though, will pose a technical challenge from a surgical standpoint. Moreover, when he opens up the chest, he expects to find adhesions between Jude's various organs, including the lungs. It will be necessary to cut through the adhesions in order to move organs back into their proper place and then patch the hernia again. Unfortunately, cutting through scar tissue puts Jude at notable risk for bleeding, just like in the first surgery. Assuming that surgery is successful, Jude will suffer a big respiratory setback and will need time to recover. He'll be reintubated for the surgery, then he'll need to be weaned off the the respiratory support while he recovers in intensive care. His pain will be managed through medications, just like before, and he'll then need to be weaned off any narcotics or other drugs being used.

Dr. Hebra conceded, then, that he's worried about our little boy. Jude is far from a straightforward case of CDH repair, and the unique nature of his problems and the challenges that they pose have apparently prompted Dr. Hebra to discuss the case among his colleagues a number of times since he returned from vacation a week ago. There are those cases where he can offer honest encouragement of a good outcome -- our baby boy just isn't one of those. He leveled with us: "I wish I could tell you everything will be OK, but I just can't do that." Beyond doing all that he and the other medical staff could do, he said he'll be keeping his fingers crossed and continuing to pray for Jude.

I think it's fair to say that Rose and I were distressed and disoriented by all of this. We dared to hope that the time had passed when we had to say "if Jude comes home," and that we could now say, with some measure of assurance, "when Jude comes home." To go from if, to when, and now back to if is a hard pill to swallow. It felt the like the roller coaster had crested and was plunging down, yet again.

Please continue to pray for Jude's healing. Thank you all.

20 comments:

  1. Rose and Brian,

    Our hearts are aching for you. Reflecting on that awful feeling of having those sobering, honest moments with Pierce's doctors. And yet, as I read this post, my mind went back to those days. I remember the day I stopped asking his prognosis. And I also remember the joyous day when his neo finally stated he had "one foot out of the woods." A time that literally didn't happen until about 1 week before discharge.

    Please know that Nik and I are praying daily (sometimes hourly) for you all. Remember that God's grace is sufficient for you and His power will be perfected in your suffering and weakness. Also, remember that our God is not concerned with a statistic or prognosis- He holds everything together and can do as He pleases. He has brought Jude this far, and He will continue to work in Jude's life.

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  2. Our hearts break for you, as I know that you feel totally devastated, weary, and that it is increasingly difficult to find the energy and hope to continue on this journey. Praying that God will give you what you need to make it through one minute, one hour, one day at a time. We love you and are praying for you.

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  3. Praying for you and Rose and especially Judge.

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  4. I know you are beyond weary...please try to stay positive and know that Jude and your whole family are in our prayers. Jude surprised his surgeon once and there's no reason why he can't do it again!

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  5. Praying mercy for Jude and thinking of you three often.

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  6. I am just in tears for you. We had such a long and complicated CDH road that ended so much differently than we had hoped and reading your post just breaks my heart as I remember how discouraging and upsetting each setback is. Jude is a miracle and a fighter and I will continue to pray for your family. Try to hang in there, I know it is so hard.

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  7. I've been following your journey since before Jude was born (we used to live in the Greenville area), and I continue to lift up both you, Annabelle, and Jude up to God, for strength, healing, and peace.

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  8. Our family in Australia will keep the prayers coming your way. Our daughter is 8. She has physical and intellectual disabilities due to a rare chromosome disorder. She is one of only two in the world to have her particular disorder. So I completely understand what it is like to have a child who is in unchartered territory. I crave normal, dull, boring and uneventful as I'm sure you do too.

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  9. Prayers from North Carolina. Out hearts are with you.

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  10. Prayer circles are at work in Texas.

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  11. I, too, have been following your journey, since our granddaughter, Baby Bee, was diagnosed with CDH. I pray for Jude and your family every time I pray for Bee.

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  12. Prayers from New Orleans. May God give you the strength you need each and every day.

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  13. Dearest Friends...I can't imagine what you're feeling right now. Jude has been through so much. I can share that there was a moment when I personally had given up all hope of Killian surviving...thank GOD there were others who still hoped and prayed for me, for Lindsey and for him. And we are doing that for you. If you are weary, rest assured knowing that you have thousands out there praying for you and Jude and that God's perfect will be done. Hugs and lots of love- Killian's Aunt Layna

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  14. I have no words for you but we are praying boldly for Jude.

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  15. We love you guys. I know that there are no words that I can say to give you comfort but I am thankful that you know the same loving God that I do. He knows all and he will not give you more than you can bear. Your trust in Him has been so beautiful to watch....continue to cry out to Him. We are praying with you and for you.

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  16. OH dear ones... we ache with you. As Killian's Aunt Layna said above: we hope with and for you in your weariness as we lift up Jude to his Maker.

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  17. Thinking of you often, and sending prayers. I'm hopeful that he'll recover well, and that you will, indeed, see your little boy come home.

    Mom to Quinn, RCDH survivor
    www.us-and-ours.com

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  18. I am praying for your family!! I'm sorry things aren't going as well as before.

    Hugs from Texas, Becky

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  19. Much love and prayers for encouragement and strength are going up for you guys. I know this can't be anywhere close to what you had hoped for Jude. God is Sovereign, He knows what we cannot know. May you rest in His hands of mercy. Keep fighting Jude!

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