Monday, March 26, 2012

A Marathon Indeed

Perhaps we've said it on here before, but it's been said that CDH is a marathon, not a sprint. If that's true, then Jude must be in training to be an elite ultramarathon runner.

If you only have a moment to read, here's the gist:

For now, Jude's repair surgery has been put off for several weeks. Also, his surgeon won't be able to insert a gastric tube (G-tube) as part of his hernia repair surgery, so, if he does ultimately require a G-tube -- and it's likely that he will -- he'll have to wait 2-6 weeks after his hernia repair to have that surgically inserted.

Bottom line: Right now, it looks like Jude will be in the hospital for quite a bit longer.

(If you have a few more minutes and want more details, then please keep reading.)

Suffice it to say, we received a lot of information today that has helped us envision what the future may hold, but we still came away with some unanswered questions. Hopefully they'll be answered in the next few days, which will allow us to paint a better picture of Jude's present condition and what lies ahead.

Dr. Hebra returned to work today, and we caught up with him around noon. Here's what we understand to be his plan of care for Jude at this time:

  • First, and most notably, Dr. Hebra wants to hold off on Jude's hernia repair surgery for a while -- for weeks, it appears, although we don't yet have a firm date. The logic for this is that Dr. Hebra wants to ensure that Jude is in optimal health and in the best possible position so that his surgery is more likely to be successful. He indicated that rushing into surgery quickly could simply foster conditions favorable for recurring reherniations; instead, by waiting for a while, Jude will have time to grow and strengthen his lungs (perhaps developing a small amount of new lung tissue in the process), and in the interim a clear surgical plan can be developed. (I feel incapable of expounding on this any further at the moment. I'll try to provide more info later if I can.)
  • Dr. Hebra wants to resume feeding Jude, but with one important difference: He wants to advance a nasogastric tube just beyond his stomach to the pylorus, a section in the upper part of the bowel, and start feeding him there. This kind of feeding is called transpyloric (TP), and Jude actually has been fed in this manner in the past. What makes TP feeds different this time is that Jude's bowel is in his chest, and threading a tube sinuously through his stomach and into his bowel may be difficult, if it can be done at all. Radiology will need to work with Jude's other doctors and nurses to ensure that the TP tube is placed in the right spot before feeding could be resumed, then, of course, Jude would need to tolerate the feeds without any kind of gastrointestinal problems and without any respiratory distress. If TP feeds for some reasons don't work, then the medical staff can always fall back on IV nutrition.

    (At the time of this post, Jude is still receiving his nutrition intravenously. The caring for him neonatologists may be discussing this matter further with Dr. Hebra before TP feeds are begun. More info on this later.)
  • Tomorrow, Jude will have a brief surgical procedure to insert a BROVIAC catheter, i.e. a tunneled central venous catheter. This is a special catheter that will be surgically inserted in the upper part of Jude's chest, just under his clavicle (collar bone), and will be tunneled under his skin a short distance before entering a large vein just above his heart. Unlike a peripherally inserted central catheter (PICC), the BROVIAC should be a bit more secure and will allow for consistent central venous access.

    The nurses in the NICU responsible for placing PICCs have been most successful in obtaining central venous access through Jude's head, so that's where they've been almost exclusively placed in the past 3 months; however, a PICC requires a secure sterile dressing, and, unfortunately, Jude sweats so much on his head that he's needed daily dressing changes for quite some time. Also, PICCs can be pulled out by a patient or can otherwise come out because of an accident. Jude actually lost his latest PICC because his dressing came loose and the catheter came out. Because of these and several other reasons, a BROVIAC has been selected as a reasonable alternative to get central venous access so Jude can receive his medicines, fluid, and IV nutrition.
  • Dr. Hebra communicated that he cannot consolidate Jude's hernia repair and G-tube insertion into a single case. Indicating that he feels doing both procedures at the same time would essentially be commingling a sterile procedure (hernia repair) with a "dirty" procedure (G-tube placement), he informed us that the two procedures would have to be discrete operations with a 2-6 week period between the hernia repair, which would be performed first, and the subsequent G-tube operation, assuming it's necessary.

    (For those of you who may not know, a G-tube is simply a tube that would go into Jude's stomach and allow us to feed him in that manner if he's not ready to eat by mouth.)

Other than the discussion of Jude's plan of care, there were no major changes today: He's still on nasal cannulas for respiratory support, and he's still on IV nutrition and meds, although they're now being administered through a peripheral IV on his hand instead of a PICC on his head.

Jude's doctors, specifically his neonatologists and surgeon, still have some things to hash out about his plan of care in the next day or so, as there still may be several points that need to be clarified or tweaked. Many of the people who care for Jude have become very dear to us, and we know that they have a very difficult and complex task before them. Please pray with us that God would grant them wisdom and discernment as they consider how best to treat our little boy.

Jude himself has become increasingly irritable and fussy over the last week, despite getting regular morphine and occasional Ativan. He appears to have less and less energy to "fight" any discomfort before he eventually gives out and falls asleep. He coughs and gags on his gastric suction tube repeatedly throughout each day. He seems to be working harder to breathe these days (i.e. he bobs his head and moves his body more with each breath), although he thankfully hasn't lost any notable ground from a respiratory standpoint. Overall, Rose and I have been very sad to see our little boy so uncomfortable, even though we're obviously glad that he's weathered his reherniation so well. Please pray with us that God would give Jude some relief from his pain, no matter how He chooses to provide it.

Today's news was a pretty significant curveball for Rose and me. We've rearranged our lives in response to Jude's hospitalization -- and thank God that He's helped us do that through lots of help from others -- but we're tired. Rose has been away from our home since before Thanksgiving, and she's only been back once for about a day and a half, so she's dealing with separation from our home and community. Moreover, she sees Jude and his struggles more than anyone, and she also has to balance being a mother to our sweet little girl, Annabelle. I've been working a reduced schedule and driving to and from Charleston on a weekly basis since mid-January, but I've increasingly struggled with thoughts and feelings of inadequacy -- that I'm not serving anyone well in either place I presently call home. When we consider all of these trials, we know what to believe about them intellectually, but it's been hard to let those beliefs get in our bones and inform us on a functional level. Remembering our God in times like these -- regarding Him in all things, asking for forgiveness and mercy, and praising him for His boundless love -- has been very difficult when worry, anxiety, and fear seem to beset us on all sides, and we know that we constantly fail to remember Him. Thank God that He forgives such sin as ours and that His blessings aren't based solely on our faithful obedience or whether we always remember Him; otherwise, we would be hopeless indeed.

That's all for now, folks. Thank you so very much for reading and for your prayers -- please keep them coming. Good night!


  1. We love you guys so much. I was hoping myself that the hernia repair and g-tube could be done at the same time and that they would be sooner rather than later so that you'd be on your way back to Greenville. I'm so so sorry to hear that the finish line has been pushed back again. I know the feelings of sadness and the weight of desperation that you're feeling. My heart was dropping as I read the news, and I know it's only a tiny fraction of how you're feeling. I have no brilliant words of wisdom or encouragement, except to tell you that this is really really hard and I'm thankful that our God knows and understands all the feelings you're having - exhaustion, inadequacy, frustration, desperation, anger, sadness, and more.....

    We continue to pray alongside you, asking God not just for peace and healing for Jude, but for the emotional energy for you, Brian and Rose. It's asking a lot. Sometimes I think the miracle of the parents "making it through" this is just as wondrous as the miracle of healing in the baby. Asking and trusting that God will provide both.

    Let us know what you need. We are here to listen and to help in whatever way we can.

    Peace be yours.

  2. We're thinking about you all and praying for you constantly!

  3. May God bless you both with the patience, endurance, and strength to get through this very long journey. My heart goes out to you.

  4. All I know to say to you both is to keep repeating Phil. 4: 6-7 to try to maintain peace and stay focused on Christ.

  5. My heart aches for you guys. I wish we could do something to relive some or your tiredness and anxiety. Our Heavenly Father is good and he will give you what you need. You point so many people to Him with your words and actions. We love you and will continue to lift you and Jude up in our prayers.