Last night, I had to raise a ruckus about our lack of care. The medical director (over the attending doctors which are all pediatricians) had been in to see me, and saw the diarrhea diapers. She saw them test positive for blood with her own eyes. She had been on the phone every day this week with the gastro doctor that is "on call" here.
And yet, yesterday, he refused to see us. He sent a message through the attending that we could follow up with him outpatient. I thought that was ridiculous and told everyone we had contact with how ridiculous I thought it was.
I called the number on the medical director's card and was told she would be returning to the hospital to speak with us. Her secretary immediately came upstairs to wait with us.
The medical director was apologetic when she arrived, but said that part of what we are facing is the "limitation of Richmond." This one gastro practice covers all the hospitals here, so even if we were in another local hospital, we'd get the same gastro. And since he was on call there was really no way to reach anyone else.
She said she could call a colleague at UVA but that it would be a phone consult because they do not have privileges here. So there would be no examination of Xander. I told her that was ridiculous.
She said there was a small possibility she could call in a favor and speak with another doctor from the same practice but that he was not on call so he of course has the option of not coming.
I told her that this whole thing was insane. I had a child vomiting, with diarrhea that tested positive for blood and he had dramatically decreased what he was eating and even drinking. I told her if no one could help us here, that we expected a transfer to a major pediatric medical facility outside of Richmond. (Richmond does have a Children's hospital but again, we'd get the same doctor.)
She ended up calling Dr. W and asking for a favor. He said he would be here this morning because he had a lecture here this morning and he would see us afterwards. We were satisfied with that solution.
The patient advocate was the next person in our room, and we let her know how the first doctor had treated us. We filed a formal complaint that will be evaluated by their quality team and their medical team. I also let her know that I fully intend to file a complaint with the medical board and our insurance. Her eyes were bulging out when I told her everything we'd been through here.
This morning, Dr. W arrived and took a full medical history for Xander. He examined him thoroughly. He asked a ton of questions that we answered willingly. He doesn't have any answers yet and he apologized profusely for that. But he is willing to try to find help for us.
He has removed ALL the dietary restrictions because he does NOT feel any of this is allergic in nature. When Xander was first admitted he was on a regular diet minus eggs, soy and milk. Then with the vomiting and diarrhea he was moved to a bland diet. ALL of those restrictions have been removed. Brandon and I are concerned about this, but willing to try. Dr. W thinks that we may have just had a coincidence with those foods. If things go badly, we can rehydrate Xander here.
Dr. W. is going to look back through the records and the history we gave him and see if he can come up with something. Brandon and I feel heard again. The second doctor is honestly the complete opposite of the first doctor. He was thorough, soft spoken, caring, empathetic and reassuring.
Xander's stools do not test positive for blood so far today. He is very fussy though and has a very large, round tummy. I feel like this is the calm before the storm, but we'll see.
This morning, he had lost the little bit of weight he had gained here. And he is still listed as failure to thrive.
Thank you for your prayers. We know and love God and truly believe that He loves Xander even more than we do. As a mama, that is very hard to imagine. In fact, just the other day, a nurse asked about Xander's pregnancy and it took me a few seconds to remember that I wasn't pregnant with him. The love we feel for Xander is great and it is very hard to remember a time without him. We are willing to fight and advocate for him for as long as it takes to get him the help he needs.
Please continue to pray for Brandon and I. We are weary but again, willing to do whatever it takes. Brandon is greatly worried about the emotional and physical stress on me, since I am expecting, so we are praying for God's protection for our sweet, tiny babe. Pray for Dr. W, that he is willing to be a champion for Xander and do whatever is necessary to get us an answer. Pray that Xander feels better soon. And pray for my other three children that are currently in Georgia with family. Solomon keeps looking around for his partner in crime, Xander. My children have never been divided in this way.
I'll continue to update as I am able.