Sorry for no update yesterday. It was another crazy day and by the time I finally got online last night, I wasn't coherent enough to actually write an update. When you envision a hospitalization, you think of sitting in a chair at your loved one's bedside, reading or knitting or chatting. That is SO not the case here. I feel like I have run a marathon at the end of the day.
So yesterday...I walked in the room and noticed that Will's blood pressure was 65/48. I promptly found the nurse and requested the bp's from the entire night. This is not a good trend. Then another member of the venous access team arrived, introduced herself, and said, "I am really good with ports." to which I responded, "You are not touching that port until someone can tell me what is wrong." I was very done being pleasant. I had requested a port study when this started, and that was denied. I had requested a chest xray that showed it was "fine". So we are gonna wait on the surgical consult which still has not appeared.
Well, the neurosurgery nurse practitioner walked in and asked how things were going. I filled her in on the blood pressure issue, the port issue, the lack of response that I felt was being provided, and this woman knew how to make things happen.
Rounds were beginning, so we walked out into the hallway and listened to the basic report of Will's last 24 hours. No one thought anything of the blood pressure issue. The attending was of the opinion that he was finally going to move Will to the floor, when the nurse practitioner caught my eye. She quickly informed him that neurosurgery was concerned about the port issue and if this child was headed for further surgery, requiring intubation after just having been trached, well...really...do we want to move him? Oh, and by the way, where is the surgical consult? At this point I am starting to cry...the attending looks at me, and I quietly inform him that after being off his IV for ten hours the previous day, we had seen a drop in blood pressure that no one caught. "Oh! That is the first sign of decompensation." Um, yeah. So he ordered a bolus of normal saline that I then stated could only run at 250 ml/hour. They have really had it so easy with him. :)
The surgery consult arrived, compared last night's xray with previous xrays and said, "Hmm...the port moved." So he orders a port study which of course requires us to access this port. I have talked to David Charles who informs me that it can be accesssed under fluoroscopy. So we agree to the port study and request an order for significant pain medication for William.
The final result is that the first nurse who tried to access it apparently missed the port and the needle punctured surrounding tissue which promptly became sore and swollen and the swelling moved the port. The port study does show that the port is fine, the swelling has reduced, and the port is back in place. It does not feel like it used to, but it can be accessed. After the port study, I looked at the CVC team and said, "What are we going to have to do to get permission for me to access this port instead of a nurse?" I have no desire to repeat the previous 24 hours.
So, the port is fine, I was able to access it, the attending was able to finally evict us from ICU, and we are now on the neurosurgery floor. He currently has hives...again...and we have no clue why. So we are grateful they have medication that helps him stop itching. :)