Rowan is doing fantastic. He is stable, had no problems with his transport whatsoever, and has been upgraded to a larger bed.
We arrived in St. Louis around 7 last night and went straight to St. Louis Children's Hospital to see him. Let me say, that Saint Francis Children's Hospital in Tulsa is an amazing facility. It looks like a Science Center more than a hospital and is pretty impressive. That said, SLCH makes it look like we went from a pond to the ocean. I don't think I've ever been in a hospital this large.
The staff here have been great. They are very confident and kind when we ask questions and have been taking excellent care of Rowan.
After we said hi to Rowan and met with his nurse, we went to Haven House, where we are staying, to check in.
Haven House is a nonprofit service for families with ANY family member in the hospital that live more than a 25 mile radius away. We have our own room (which can sleep up to 4) and bathroom. The House provides breakfast and dinner as well as a gym and internet room. It costs $30 a night and is about 20 minutes away from the hospital but is located near lots of different retail stores so if we need anything it won't be far away. We slept there last night to make sure we were really well rested for meeting with the Doctors today.
Rowan's admitting physician called us last night to tell us that the care Rowan received in Tulsa was really good. They are continuing on with the plan they had for Rowan in Tulsa and have changed very few of his medications. They are focusing on reducing any swelling he still has before surgery.
There is a chance that he will have surgery today. He is the second case on the boards, but the 1st case today is pretty complicated (read: takes a long time) and so is Rowan's, so if they do not finish the first case by early afternoon, Rowan will wait until Monday.
Our daughter is doing wonderfully with my parents. The rest of my family is driving in to Tulsa today and we are planning on trying to Skype with them all Christmas morning so we can watch our daughter open her presents and say hi to everyone.
Thank you for all of your kind thoughts and support. We are so grateful for all that everyone has done to help us out. It has certainly been a humbling two weeks, but we are so thankful that we have loved ones to turn to.
We will update with information about surgery again later today.
Our son, Rowan, was born with Congenital Heart Disease and later diagnosed with Cystic Fibrosis. He had 2 open heart surgeries, 5 heart caths, and 2 additional surgeries. Realizing that despite fighting for him, Rowan was never going to get better and that he was hurting, we made the decision to change our fight from a long life, to a beautiful end to it. Hospice was a true gift and a beautiful time for our family. We said goodbye to our son when he was 7 months old.
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