Wednesday, August 19, 2009

A Plan of Action?

Maybe. But a bit of a scary one. It seems that Samuel’s pulmonary hypertension (i.e. pressure of the vessels around the lungs) has improved. This is an answer to prayer. One evidence of the improvement is that yesterday they weaned him off of one of the meds (nitric oxide), and today they have backed off of a second (Bosentan or Tracleer), and he seems to have tolerated them well. Another way that they know that his pulmonary hypertension has improved is from the echocardiograms. On the echo images they can see that the PDA (patent ductus arteriosis; duct or vessel that connects the aorta on the left which sends oxygenated blood to the body to the pulmonary artery on the right which sends deoxygenated blood to the lungs) is still large, but because of the decreased pressure in the lung vessels/arteries some of the blood flow across it has changed direction. Also, because the coronary fistulae are shunting blood in the same direction, even more of his blood is going from left to right, “flooding” his lungs. So while the decreased pulmonary hypertension is good, on one hand, it has created another problem by causing too much flow to the lungs. The doctors believe that in addition to the ventilator which does not allow him to cough, sneeze, or spit out the mucus in his breathing passage, this “flooding” also contributes to the additional fluid in his lungs (not exactly sure how, though). The fluid in his lungs has led to the atelectasis or the collapse/deflation of parts of his lungs which we’ve been telling you about for the last few days. Interestingly, the cardiologist takes all of this as a complication (i.e. his primary concern right now is for Samuel’s lungs) while the surgeon calls this all an improvement.

As a result of all of this the doctors are suspecting that the PDA will need to be ligated. This surgical procedure would entail tying off the duct by going through his ribs (i.e. not an open heart surgery). The scary part, however, is that his lungs are in such bad shape and would need to improve significantly before surgery. This morning’s x-ray showed his lungs to be in worse shape than they were the day before: the right looked as bad or a little bit worse, and the left one looked entirely collapsed. Surprisingly his blood gas numbers and his oxygen saturation look decent for lung x-rays that look as bad as his do.

The next step to improve his lungs is another bronchoscopy, probably this afternoon. They will try to flush and suction as much fluid as they can. One particular challenge is that the upper right lobe of his lung is nearly impossible to get into with a bronchioscope, and it needs help. In addition, they may need to put him back on the oscillator (the other ventilator). If those work, it sounds like surgery is likely.

The heart of our prayer for Samuel’s health has always been and will continue to be that we will have a healthy and happy baby boy to bring home soon, and that he would live a long and healthy life. More specifically though, you can be praying that:
- his lungs open up and that he is able to breathe on his own
- Samuel tolerates the bronchoscopy and that it is a productive procedure
- the PDA closes on its own and significantly reduces the fluid build up in his lungs
- short of that, his lungs improve enough to sustain him through surgery
- the doctors would have wisdom and insight in evaluating their plan
- that we would hear from Boston Children’s Hospital, and they would have a consensus with the doctors here about the best plan of action

Thank you all, so much!!! I have had a few times in my life when I have tangibly felt that I was being upheld by the prayers of others. These 2+ weeks have absolutely been one of those seasons. It is a humbling and faith-building thing.


  1. Thanks for the update...I'm praying for you now.

  2. Praying now for these specifics. Thank you so much for all of the info.

  3. Thanks for the detailed updates each day. I read them to my parents, too, so they can pray more specifically. Praying for you all now, and especially for little Samuel and the doctors and nurses as they work on him this afternoon.
    Love, Aunt Coleen

  4. We continue to pray for you guys multiple times every day! It is really amazing when you can feel everyone's prayers! Thank you for your updates and specifics to pray for! Missing you guys!
    Love, The Tates

  5. Praying right now. SO hopeful for Samuel.
    Be joyful in hope, patient in affliction, faithful in prayer. Romans 12:12

  6. Continued love and prayers.
    xo Jeanne

  7. Praying for these needs and for your entire family. We love you dearly!!!

    Much Love,