This is a bit overdue, but I wanted to share that we were discharged yesterday and were grateful to spend last night at home! My bed never felt so good!
I haven't posted since Wednesday, so I thought it would be a good idea to share what's transpired since then...
Thursday morning was pretty emotional for me as I struggled to communicate with one of the residents on our floor. This particular doctor seemed a bit out of touch with what was going on with Luke and during rounds he insisted that it was time to take him off of the blow by oxygen. Overnight his needs had been minimal, however he had been bouncing from an oxygen saturation in the mid 80's to the mid 90's, so I didn't feel like he was ready to be totally off of the blow by as we had previously discussed him needing to consistently be in the 90's while breathing room air before we could go home. This doctor also made me feel like he thought I just sat in Luke's room fixated on the monitor that tracked his pulse ox 24/7, overreacting each time it dropped below 90. Not true. As a parent, I'm entitled to understand my child's medical issues and I felt like he was speaking down to me and I also felt like Luke still needed the oxygen, which he apparently didn't agree with. It shouldn't come as a surprise I was a bit ticked off. We agreed that they would complete two "spot" checks during the day when they did his vitals and based on the numbers, we would go from there (although this doctor spoke like he thought we would be heading home by the end of the afternoon). Later in the day, during his second vital check, his pulse ox was in the low to mid 80's, requiring he be put back on the blow by, thus securing us another night in the hospital. Also that afternoon, we were blessed to have a great visit with our pastor!
Friday morning Luke was looking much, much better with a pulse ox ranging from the high 80's to the high 90's. Also his chest retractions had lessened some, making them much more like the baseline retractions we had been seeing before we were admitted to the hospital. With conversations of us being discharged around noon, I decided to take a load of clothes down to the washing machine in the Ronald McDonald Family Center so I didn't have to pack up clothes covered in Luke's spit up. Upon arriving both washing machines were full of clothes, but one of them was finished with the clothes just waiting to be moved to the dryer. I didn't want to mess with the clothes so I went back to our room for another half hour and when I went back, the clothes were still in the washer. I had been losing patience over the last day as I had been annoyed with our doctor and was irritated at whomever was so rude as to not take care of their own laundry. Embarrassingly, I made gloves out of plastic grocery bags in the room and decided to transfer the clothes on my own so I could get my clothes started. As I was mid transfer, a guy walked in and caught me transferring the clothes. They belonged to his daughter. I felt sheepish. I think he said she was 11 or 12 and as we talked, I learned that she had mitochondrial disease and had lots of medical complexities, including the mental capacity of a 3-6 month old. Apparently that morning, he had come to the hospital to find her diaper hadn't been changed overnight and she had wet through her clothes, which were what he had been washing. What a powerful lesson for me to have learned... I felt like a jerk. No matter how bad you think things are in your life, someone always has it worse. I learned that his daughters name is Faith and I prayed for her and her family for a long time last night. I also prayed for myself, that I would be able to see past my own selfish needs and have compassion for others. Also last night, I said a prayer for a baby girl named Bryleigh whose family lives in Florida. Bryleigh is only a few weeks older than Luke and also has Down Syndrome and the same heart defect. I've become friends with Bryleigh's mom on Facebook and the sweet baby girl had her open heart surgery yesterday morning. Sounds like it went well and she's beginning down the road to recovery. So back to getting discharged... Once we got home it was great to see Matthew and Dustin's mom who watched Matthew while Dustin came to get us said that Matthew squealed and got excited when he saw us through the sliding glass door! It was great to get home... I was exhausted and slept much of the evening and through the night too with the exception of getting up to feed the baby.
Today we had a follow up with Luke's pediatrician, he is still dealing with the congestion and nasal secretions but is otherwise doing well!
Thank you all for your prayers and concern for our family, we are so truly blessed on this earth with wonderful family and friends and we love you all!
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