Moving Forward

In the week since Henry's surgery, we have had some good days and some bad days. Overall, he is doing really well. We have been thrilled to see our little boy acting more and more like himself. We feel like we are finally moving forward, but know we still have a long way to go. Over the coming days and weeks, we will be working on three main things: dialing in the appropriate dosage for his heart and blood pressure medication, teaching him to take his feeds by bottles, and weaning him from his sedatives.

Henry will get an echo on Tuesday, which will help us figure out how to start moving him off of the IV heart medicine (milrinone) and on to the oral medication (enalapril). We have already started shifting his feeds from a continuous drip to bolus feeds. Giving his stomach some time off in between feeds will hopefully make him feel hungry, and want to take a bottle. So far, the main thing we have tried is to wean him from his IV sedative, and it has not been as easy as we would have liked.

On Friday, the doctors decided that Henry was ready to come off of his dexmedetomidine, an anti-anxiety medicine he has been on since he was intubated on St. Patrick's Day. However, Henry did not feel the same way. About an hour after his IV was turned off, he got very restless and started making lots of moaning sounds, and by the time the night shift started, he was gagging and throwing up. Both of us were frightened, as we were not sure what was happening with our little boy, and did not leave until after midnight and Henry had settled down.

Saturday was Jason's 34th birthday. Henry gave Jason a picture he made of balloons with prints of his hands and feet. But Henry was still not himself. After attempting to give Henry some oral narcotics (morphine and oxycodone), the doctors decided to turn back on the dex and to wean him down more slowly. Wow! We had a whole new baby within an hour. 

Henry still was fussy over the rest of the weekend and also making moaning sounds, but he had stretches where he was alert and happy. Sunday night, he was able to make it through the night without needing extra doses of narcotics to help him! He can again be soothed for long stretches by either some patting, music playing, looking at his mobile, or his favorite - being held.

On Monday, Henry was way more playful! He would coo and caa and smile and giggle! It was such a blessing to see that beautiful smile again and to hear him laugh. He is still showing signs of withdrawal as he is weaned off of the dex, but is more happy times than sad.

Tomorrow, Henry will have the echo to see how his heart is doing after the Glenn surgery and aorta patching. We have been warned to not expect any drastic changes and are nervous, to say the least, on what the results will be. 

Thank you all for your thoughts and prayers and well wishes for our son!