The past few weeks have been filled with several moments that have made me stop in my tracks. Some moments filled with pure happiness and others consumed with fear. Just a few weeks ago we sat in our house, just the 4 of us, and my heart was filled with absolute joy. Nothing exciting...nothing special...just our little family at our home together and it was wonderful! Last Thursday when we were preparing the laundry basket for the babies to sled, Kennedy sat so still and patient as she waited for us to provide enough support for Drake with blankets and pillows. It was at that very moment that I realized our little girl has been given the gift of patience far beyond her 19 months. And then last Monday evening, the moment hit me like a title wave...I knew it was time to take Drake to the hospital. The realization that he needed more support than we could provide from home was hard to swallow, but a necessary realization in order to help him heal. Here we are 8 days later and still in the PICU(Pediatric Intensive Care Unit)...luckily getting better every day!
Drake has been successfully weaned off of the vapotherm and onto a regular cannula. This morning he was on a flow of 4L and this evening he is down to 3L. Every day we are noticing slow and steady progress toward his recovery. So far there has not been any talk of moving us from the PICU to the Pedi floor, but we have high hopes that he will be ready for the move in the near future. The doctor ordered an EKG this morning because Drake's heart-rate has been fluctuating between extremes. When he is awake (and agitated) his heart-rate is extremely high and when he is in a deep sound sleep it is extremely low. We are going to assume that no news is good news, because no one came in to go over the results with us today. At 1pm Drake and I were wheeled down for a GI test. The doctors wanted to make sure his nissen was still in tact from his previous surgery and that he was not refluxing into his lungs. The results showed that his nissen is still very much in tact and refluxing into his lungs is not an issue. He enjoyed listening to his music today and playing his favorite game on the iPad (baby finger). His game helps build the concept of cause and effect with him as he is learning to use his hands. Even the slightest movement with his hand will make a picture appear and a noise sound. Poor little guy was awake all day long without a nap and struggling with his 4 new teeth coming through his gums. Two of the four have broken the surface and he finally fell sound asleep about 7:45pm. We hope and pray he is able to fall back asleep after his breathing treatment and cpts at 10pm.