Saturday, January 28, 2012

Rough Day

Jude struggled throughout the morning and early afternoon hours today: He cried, thrashed about, had a mottled appearance, and was generally in distress. He would have a tantrum, wear himself out, rest, then he would repeat the same pattern. The analogy that seems most appropriate to characterize his behavior is that of a boxer who goes through a round in the ring, takes a short breather, then jumps back in for another round.

As it happened, I had a rough morning emotionally, and so I'm sad to say I didn't exhibit much stamina when I attempted to hold him: After about 15-20 minutes of Jude's tantrums and my inability to calm him, I decided to hand him off to be put back in the bed. Thankfully, Rose was up to the task of holding him today, but even with her singular ability to calm him, he still fought relentlessly against his unknown source of distress. At one point when she was holding him, his one arm that was free was beating her chest repeatedly while he cried. It was like that for hours, and nothing seemed to settle him for any notable period of time. Needless to say, it was a little discouraging to watch.

Since Jude is presently being weaned on his pain medications and sedation, behavior such as we saw today (and even the past few days) isn't completely unexpected; however, given all of the variables in the equation today, things just didn't seem to add up. We wondered if there was some unanticipated factor influencing his behavior.

One indicator, however, led our nurse suspect something was amiss: Throughout the morning, Jude was requiring an increasing amount of oxygen support through his CPAP to keep his oxygen saturation (a measurement of the oxygen in his blood) in an acceptable range. To be sure, over the last few days, Rose and I had seen the medical staff increase the pressure and oxygen support on Jude's CPAP, but this morning his decrease in oxygen saturation  and the subsequent need to increase his oxygen support became more pronounced. Eventually, at one point around midday today, Jude's CPAP pressure was nearing its ceiling and his oxygen was at 55%, up from 21% just a few days ago. Jude's nurse consulted with his physicians, and they resolved to do a blood gas analysis and get an x-ray of Jude's lungs in the hope of finding the source of his respiratory regression.

Jude doesn't have an arterial catheter anymore, so the medical staff has to stick his heel and draw blood for tests now. :( The results of the blood gas were a little unnerving: His pH was 7.19 with a CO2 partial pressure of 69. In short, his pH was too low (i.e. it was too acidic) and his CO2 was too high. The presence of too much carbon dioxide in the blood can drive down a patient's pH and cause respiratory acidosis, a pH imbalance that makes the body's system more acidic than normal.

The x-ray provided further clarification of Jude's problem: Except for a small region on the lowest lobe of Jude's right lung, his x-ray looked mostly "whited out" because of pulmonary edema, a buildup of fluid in his lung tissue.

Earlier this week, when Jude was doing very well and had reached his "dry weight" (his presumed age-adjusted weight in the absence of any notable fluid retention), a diuretic he had been receiving twice each day (Lasix) was discontinued. Thereafter, at some point this week, the medical staff resumed administration of Lasix, but with only one dose every 48 hours. In the intervening time since Jude stopped getting daily doses of his diuretic, he apparently started retaining fluid in his lung tissue.

Once Jude's problem came into view, things suddenly became more clear about why he was probably so stressed today: He couldn't breathe. Well, he could breathe, but only with extreme difficulty. Add to that any discomfort he might have been experiencing as a consequence of withdrawal from his pain meds, and it's certainly understandable why the poor little guy was so upset.

Jude's had pulmonary edema before -- that's not new. He's had issues with fluid retention for a variety of reasons throughout most of his time in the hospital. This time, however, Jude is presumably more aware of what's happening because he's being weaned on his pain meds and sedation; therefore, it's reasonable to assume he could get crankier when he's uncomfortable.

After the pulmonary edema was discovered, Jude was given a double dose of Lasix to jump-start his recovery, and he had a very good (i.e. big) response: He urinated about 300 cc, saturating his diaper, his blankets, and his sheets! The next blood gas, while not perfect, was much, much better. Praise God!

While Rose and I are very glad that today's problem was identified and addressed, we are still a little uncertain why Jude is retaining so much fluid and why it seems to be going straight to his lungs. His nurse today suggested that it could be because of lung injury he sustained when being mechanically ventilated. As we've said on the blog before, mechanical ventilation, while it is life-saving, can slowly damage a patient's lungs, particularly if it's necessary to use higher pressure to help a patient breathe. Please pray with us that the Lord will protect Jude's lungs and that He will heal whatever damage may have been previously incurred.

We've told you the not-so-fun stuff from today, so what about the good stuff?

The latest testing on Jude's stool revealed only traces of malabsorption. That's great! To be sure, he's only getting 4 milliliters of breast milk per hour, but there's the promise that, given a little bit of time and conservative increases in the volume of his feeds, his malabsorption will get better. We are so thankful for this, but we ask that you all please continue to pray for his bowel and digestion process, that things would go well for him.

Rose and I continue to be thankful that God has placed us in Charleston and at MUSC among such amazing people and technology. The medical staff at MUSC Children's Hospital -- nurses, physicians of all types, respiratory therapists, occupational therapists, and more -- are competent and compassionate in their care of our baby boy. God ordained that loving, skilled hands would be upon our son and that mind-bending technology would be deployed to do His will. We know that Jude's health in the face of such adversity bears testimony to the Lord's miraculous healing, worked out through those who are caring for him.

Crossbridge Ministries has been amazing in providing a place for us to live (and other wonderful forms of support) while we're in Charleston, and the far-reaching impact of that ministry in our lives cannot be overstated. Brothers and sisters in Christ from nearby churches have also been extremely gracious in reaching out to us: Folks from Lighthouse Church, Mount Pleasant Baptist Church, East Cooper Baptist Church, and other congregations of His body have loved on us in real, tangible, meaningful ways, and we praise our God for that. Our home church in Greenville, Downtown Presbyterian Church, has been amazing to pray for us, provide support, and continually point us to Jesus for our comfort and hope, encouraging us during a difficult time with the comfort with which they have been comforted by God (2 Cor 1:4).

We continue to get messages and various kinds of loving support from people near and far. To you who read this blog and/or pray for Jude: No matter who you are or where you are, we are humbled that the life and welfare of our son should be on your heart.

A quick note at 10 pm: Jude's latest gas was another good one! His pH was 7.44 and CO2 was 54. (Caroline, we thought you might be interested in these numbers. :) Thank you for all you did today! You're one of our favorites!)

    For the LORD is good;
        his steadfast love endures forever,
        and his faithfulness to all generations.
(Psalm 100:5)


  1. Brian and Rose- So sorry to hear about your rough day. I know it is so hard to watch your baby endure so much and to be unable to soothe them makes it so much worse. Praying that God will comfort you and Jude tonight. Also praying that the Lasix's give him the boost he needs to be able to return down to 21% (yay for good blood gases!). I know Pierce and Jude have very different medical histories, but I wanted to let you know that because of Pierce's lung damage (also caused partially by the ventilator), he had very similar experiences. Pierce needed Lasix's on and off for quite some time. However over time, his need for Lasix slowly spaced out becoming fewer and farther between. I say this to hopefully encourage you in that it won't always be like this! Hang in there. His lungs will grow stronger every day. I know the NICU journey is exhausting and seems endless, but there is light at the end of the tunnel and it won't be long before this is just a distant memory. (We are only 5 months post-discharge and I've already forgotten so much about our NICU days.) Praying for God to heal Jude's lungs and trusting that He will. We are praying for you guys!

  2. Yes, your sweet boy is on my heart. I think of you often and pray for your Jude. Reading your story reminds me of our journey with Samuel, who is almost a year old. It was not so long ago that we walked a similar path as you are walking. I remember trying to hold Samuel while he was coming off sedation, working to breathe, setting off the alarms on the CPAP because his mask didn't fit. I wanted so badly to be able to comfort him and, after several hours of failing, had to walk away to have a good cry.

    There is light in your journey now but I know that things are still hard. I am sending you all some extra strength, the kind that another CDH mama knows all about. God bless.

    Corinne in Calgary, AB
    Mama to Samuel, lcdh survivor, Feb1/11

  3. I saw a prayer request on Kelly Stamps blog. Asking for prayers for Jude and for all of your family. So our little family in Australia is doing just that and praying for all of you. I am the Mum to an 8-1/2 year old who was born weighing 4lb 6ozs and has given the medical profession a lot of 'entertainment' over the years. I know the pain of sitting beside your child in a humidicrib praying that you will do anything if God will allow them to live. Stay strong and take care of yourselves as best you can.

  4. You guys continute to encourage me with your faith and thankfulness to God. I have been able to share this blog with friend who do not know Christ and they are seeing dependence on our God in such a beautiful way. God is using this extremely difficult situation to demonstrate His love to so many people. I love you guys and will continue to pray for you. May God continue to give you peace and faith in Him.

  5. If you ever need anything when you get pleae feel free to call. I live in fountain and have been following Judes progresss for sometime. You and your family are always on our prayers. I have also asked several people whom I work with to kift your family up in prayer. I am ususally home by 3:30 or 4:00 on most days. I have Monday off but will at St. Francis with my mother in law who is having a procedure done to her legs. We are hopeful that the doctor can do both legs. It will be sort of a long day as my son will have be picked up scholl at 4 then have to for another ot eval then come and get supper ready. Thank goodness my husband has agreeded to help out in that area. Then get him his bath and get him in bed and then get ready for bed myself to up for him to get ready for school and then mommy get ready for work. Then after that another therpay session from 5 to 6 to help him gain social skills that he needs to have. Well hope you all have a great night and keep in touch. In god's everloving Name The Connelly Family Fran, Robyn & John

  6. Sometimes words seem so inadequate and I wish I could rather hug you right now, but that not being possible, know that we are praying, trusting in the Spirit's intercession with groans that words cannot express. Much love to all 4 of you...