March 17, 2020
As
you can guess from the title Olly finally got her PICC line today. Yes it was supposed to happen yesterday but to some scheduling communication issues it got pushed out a day. The goal is that we will be able to give her complete nutrition through the PICC line and give her body the strength it needs hopefully allowing her to bowels going properly again. Time will tell.
We started her feeds back up today after the procedure at 10mL per hour with a goal of 30mL per hour. The original plan was to try and get to 15 mL per hour tonight but we have decided to stay at 10 overnight tonight. This happened for multiple reasons mainly because Olly was showing signs of discomfort. The other thought I had was that changing them in the morning when she seems to be calmer and better rested will make it easier for us to see how she is doing with them. So we will see what 15 brings in the morning.
The hospital is strictly enforcing the one visitor in the room policy so we had to make the swap in the parking lot today. Looking for a silver lining, Mara spent the entire day with one of her parents for the first time in over a week. I think it was time Mara needed. Heck I needed it too.
I’m going to close with a few things I am thankful for:
I am thankful for our families that have walked this entire journey with us, taken Mara at a moments notice sometimes overnight, cleaned our house, wrapped birthday presents, helped plan a birthday party and so much more. They have been amazing and we would be lost without them.
I am thankful for our nurses here at M Health Masonic Children’s Hospital, they seriously always seem to know what we need before we need it. When I say they have become part of the family I am not kidding. They have helped us in more ways than they will ever know.
I am thankful for my wife Lora. I know this is by far the hardest thing that either of us have gone through in our lives and I couldn’t imagine doing it with anyone else. Her love for Olly is unmatched.
I am thankful for my
girls. Mara is such a ball of energy that doesn’t seem to stop. I could make millions if I could bottle and sell that energy. We are often told she lights up the room and that doesn’t change most of the even through this hard season. Olly has been a ray of light through this whole process talking with people at the hospital Olly just draws people in. This can be proven by the fact that two nurses gave Olly a bath and at least that three stopped to make sure they didn’t need help. I just got to stand back and watch her kick and splash in the water.
I am thankful for our church family who tonight organized a video conference prayer meeting for Olly that 29 different logins joined. I know for a fact that several of the 29 had more than one person there, I am guessing we were well over 40 people that took time out of their lives this evening on very short notice to come together and pray for Olly and our family.
I also want to share something that is being done by others and want to invite you to join in if you would like. One of our Pastors has an alarm set for 4:22 pm (Olly’s birthday is 4/22) to pray for Olly daily at 4:22 pm. We believe in the power of prayer and would love you have you join in in whatever way you feel called.
I am thankful for you. You take the time to read, pray, send positive vibes. It is truly humbling how many of you stick through my poor writing and lack of proofreading.