Rollercoaster

For starters let me just say that it was a really hard day. Though we’d been told that Samuel had been stable through the night it was evident to us when we walked in this morning that he had worsened. His heart and respiratory rates were up, and his oxygen saturation was down. Just looking at his heaving little chest made it clear that he was laboring.

From the beginning this made me nervous about him going in for the heart catheterization. He went in at 11am, and we didn’t get to see him until after 3pm. A couple of phone calls from the nurse in the in between time confirmed that his lungs were giving them trouble. He was breathing so hard over the ventilator that they gave him a paralytic in addition to the sedation and let the ventilator do all the work.

When we finally got to see him they were completing a switch from a conventional ventilator to an oscillator. An oscillator oxygenates his body with less stress on the lungs and essentially gives him internal respiratory therapy. Instead of full breaths it gives him rapid puffs; these pulses make his whole body shake. As long as he is on the oscillator they will have him on sedation, pain meds, and a paralytic. As you can imagine, it is very hard to see him this way. They hope to switch him back over to the ventilator tomorrow or Friday. Because of all of these complications, they never got to the bronchioscope. They plan to try it again when he is back on the vent, but they don’t have much hope that it will turn up anything helpful.

Before we got to see him we spent 30 minutes reviewing the images of the heart catheterization (i.e. angiogram) with the doctor who conducted the procedure. The results essentially confirmed what they suspected: there is definitely no clear surgical fix at this point, and they’re not sure that any surgery (i.e. closing the PDA, tying up the fistulae, or closing the ASD) would help and not further complicate things. Most disconcerting was the discussion of extreme options that we’d never heard or considered before: heart transplant or, worse yet, heart and lung transplant. These are last resorts with poor long-term prognoses. It sounds like infant heart transplant patients usually need a new heart within 5-10 years. Because of his lung troubles (i.e. pulmonary hypertension) he is currently ineligible for a heart transplant. In addition to the shortage of surgical options, there are very few medical means of help. This was all very discouraging.

The one step that they have taken as a result of today’s procedure is to give him nitric oxide (not to be confused with nitrous oxide, or laughing gas) through his tracheal tube to relax his lungs. The hope is that between the nitric oxide and the oscillator they will be able to reduce or alleviate the respiratory distress syndrome and especially the pulmonary hypertension. If he responds well, they will slowly wean him off the ventilator with the eventual goal of getting him to breathe on his own. Currently that seems so far away, but it was the most hopeful scenario we were presented today.

One change today was that the doctors were talking more like his lungs are the bigger issue. That is, he is currently so sick more because of pulmonary hypertension and respiratory distress syndrome than because of his heart/circulatory defects. They even seemed to suggest that they don’t think the heart issues are the primary cause of his lung disease. Because his liver seems to be doing better, if his lungs also strengthened, they could essentially isolate his heart problems and understand better the extent of his heart abnormalities (i.e. fistulae, PDA, potential coarctation, etc.). On one hand, the heart problems seem to be quite severe because the doctors are bringing up transplant as an option. On the other hand, an hour later one of the same doctors said that his heart issues probably weren’t so serious, and if we were able to get him off the ventilator, we may not even be in the ICU, but in the Step Down Unit. What a roller coaster! When these doctors (we really do love them and are very grateful for them!) get into information mode it is intense: part of me wants to intently listen, ask questions, and understand, another part of me feels like I am going to explode, and yet another part of me wants to pass out. It is overwhelming and exhausting.

Please continue to pray for Samuel and for us. Pray that his lungs would strengthen and heal, and that his heart would, in fact, be functional even with the myriad of defects. Over and over again today my mind and heart have turned to the truth that God’s grace is sufficient and that His power is made perfect in weakness. He is sustaining us.