Yesterday when Noah's hospice nurse came over, she and I noted that the remaining suture holding Noah's central line in place had very nearly come out. It was just hanging by a thread. She called Dr. A and suggested he come by and take a look after work. Unfortunately during Noah's nap he ust have moved just the wrong way and the line came out completely. He lost a lot of blood but the paramedics were finally able to get the bleeding to slow down.
He is currently in the hospital in Greenville. While his lines are usually placed in Columbia, the surgeon on call did not accept the request for Noah to be transferred there. He felt that given the current complexity of Noah's issues he needed to be here where his specialists are. We are very thankful that the team here accepted him and are willing to place a new line even though they do not generally place multi lumen lines here. It is very much in Noah's best interest to receive all of his care in one hospital so Columbia's refusal may be very much a blessing in disguise.
Right now Noah is getting a vascular ultrasound and he is scheduled for surgery tomorrow morning at 9 AM. The surgeons here are extremely capable but I would ask prayers for wisdom as they are simply not as familiar with Noah's anatomy as the surgeon who has placed his lines for years.
I met with the palliative care team this morning and they may be able to coordinate a multi Doctor meeting while we are here for the purpose of understand more about the ramifications of Noah's current decline. Based on information gleaned from that meeting, we mays pursue surgery for an AV fistula. This would eliminate the need for further central lines. While it is a bigger surgery, it would be a one-and-done procedure. The fistula would take months to mature after it was created, so we cannot do it instead of tomorrow's central line placement, and we may not pursue it at all based on the information from the meeting. Please pray for wisdom regarding this decision.
The doctors are also doing more labs to try to pinpoint the cause of Noah's bleeding disorder more specifically in the hopes that we can treat it instead of just reacting on an emergency basis whenever he has a bleed.
Noah would definitely enjoy visitors today or this evening. He's in room 6514. He may also be up for visitors tomorrow late afternoon or evening.
I will definitely update on Facebook tomorrow and will update here was time allows.
Blessings,
Kate
