Alex and Maddy

Alex and Maddy

Thursday, March 22, 2012


Today we got off a crazy beginning and it continued all day! I woke up to the resident coming to check on us. We discussed the pressing issue...imaging the femoral vein. She let me know that Hematology would be by sometime and the team would be back shortly. I quickly ran to get coffee before the team showed up. Everyone was thrilled with the news that Alex sat up for the first time last night! They thought he looked great. Alex even played with the attending some. We discussed that we were going to complete a 7 day course of both antibiotics he has been on because even though nothing grew in his cultures, he was too sick for anyone to feel like taking him off antibiotics. We decided pancreas wise he is right where we would expect and his lungs seem to be improving. Labs are still all trending in the right direction except his blood counts which are falling daily.

The team had only been gone a few minutes when the hematologist came. It is not our regular hematologist, but her partner who we have seen a handful of times. She felt like the best option was to do an MRV (MRI of the vascular system) to see if the occlusion of the femoral vein is a clot or some other problem. She was honest in the fact that all signs are pointing to a DVT (He also has a lab that looks at clotting that is grossly abnormal), but there is no way to know for sure. The lab could also just be high because of the pancreatitis. The MRV is scheduled for tomorrow morning. Unfortunately Alex has to undergo anesthesia again which makes me a little worried after last week!

Before Hematology had even left, Dr. Pacheco came in. She was also really happy with how Bug looked, but was sure to tell us that we had caused her grey hair over the last week. She decided to go ahead with his IG infusion that we had held off on Tuesday. I asked her reasoning on holding it earlier in the week and she let me know that she was really worried about him and wanted him closer to baseline before adding anything to the mix. She also okayed us to give blood which we knew he really needed. The last change she made was stopping the extra fluids we have had running all week.

At the same time Hematology and Dr. P were there, GI showed up! They have kind of turned over control to Alex. He numbers are still elevated, but at a place where we are hoping to start some meds and trophic feeds into his tube. We need Alex to feel well enough to tolerate some sips of water. At that point we will attempt some meds before moving onto feeds.

Pain team came by and we decided to stop the continuous drip of pain meds. He can still push his button for meds every 15 minutes. He is using it about 2 times an hour. We have to be totally off pain meds before we can go home.

Dr. K came by to check on Bug and discuss our plan for seizures and anesthesia. She thinks we should just keep doing what we are doing. Adding more meds will most likely not change anything.

By 11:00 we had seen a slew of doctors and had a pretty good grasp on a plan. We were invited to the park upstars to see a dance performance. Alex felt up to trying so we transferred him to his chair. He enjoyed the performance and also stayed to watch a magic show. I think the trip out was too much for our first "good day" because he came back to the room and had several meltdowns this afternoon.

Late this afternoon we gave his infusion and he is getting his blood now. I think both of these should help him. I am praying for a smooth anesthesia tomorrow and clear answers. I believe that whether or not he has a clot will determine how long we are here.


1 comment:

  1. I am happy to see Alex up and awake. I miss him very much. Let him know that I am keeping a running tab on all of the hugs and kisses I am missing when he is away. I expect payment in full when he gets back. Love to you both.