It seems so surreal when everyone who stops by talks about discharge on Monday. We never thought David would know life outside of the hospital, and are excited and nervous for this next adventure. We’re slowing learning more about what life will look like. If he continues to eat well from the bottle, there is talk that his feeding tube could be removed before going home as well! What a relief that would be – I’m sure David would pull it out himself on the ride home otherwise.
His echo today didn’t show any changes from his echo last week, which is great news. Everything is looking stable with his stents and pressures in his heart so far. Today he’s been setting off alarms all day for having such high oxygen saturation levels. It’s not really a problem for him, and just annoying dings from his monitors.
The dietician stopped by this morning and David hasn’t had the weight gain they would like to see so far. We decided to increase his feeds just slightly and see how he handles them. So far, he has continued to finish his bottles with the increase, so hopefully that continues. She will also come up with some recipes on how to mix his fortified feeds when he is discharged so we’ll know how to make those bottles for him. The training for mixing his bottles will likely occur next Monday.
We did OT this morning, and today it was my turn to put him into flat tummy time position so she could give some pointers if needed. David likes tummy time if he can just sleep and not have to work at all. The OT said he did great.
Speech came by again today and gave him a bottle. It was his first higher volume feed, and he did great. As he gets tired while eating, we may have to help pace him, but otherwise, he’s doing a good job of pacing himself. David should also now be awoke to receive his bottles overnight. Before they were letting him sleep and putting it into his feeding tube. He has to prove he doesn’t need the feeding tube before it can be pulled. Tomorrow I think we’ll also attempt to give him his medications orally rather than using the feeding tube as well.
His cardiologist also visited today. We’ve decided to continue seeing the cardiologist we saw before he was born as she is also on the single ventricle team and she was great at communicating with us at our level. He will have weekly cardiology appointments after he’s discharged. She did make mention that David could have a delayed Norwood rather than a comprehensive Norwood/Glenn. It really depends on him and how his body responds as it grows, but she’ll check with the surgeon to see what he thinks as well. So far everyone has leaned toward the comprehensive surgery, but we’ll see.
Adam and I also went to infant CPR training. We’re hoping we never need to use it, but hopefully will be able to help David until help arrives if we need to. I had to administer his injection today. He seems to really enjoy getting the bottle after the injection – it really helps to calm him down. Otherwise, it was a low-key day today. I’m hoping that they are all low-key from now on and we just continue to work on getting more and more comfortable with providing the care David will need at home.
Praying that David’s improvements continue. Praying also for Mom and Dad that you get the rest you need. It’s so nice to hear about David’s positive progress. Thank you for sharing.
So many new things to learn! My prayers continue for you all.
Wonderful news of his improvements. It’s a lot to learn. How exciting to think about bringing him home sooner. Prayers & hugs going your way❤️
Love in high doses to you all.