A Crazy Day!

Today has been a lot crazier then we expected! An early morning visit from our attending pediatrician got the wheels spinning on some changes. We realized that Alex has been getting progressively more dehydrated. We decided to increase both the amount of fluid in his TPN and also add additional fluids that run around the clock. We are hoping the extra fluids will help him feel better. We also sorted out the confusion regarding the CT scan. Last, we discussed the possible need for blood later in the week.

We had a visit from our beloved surgeon. He always checks on us when we are hospitalized and he wanted to touch base regarding the plan for replacing his port. As of now the plan is to go to the OR on Monday to get a new port. However, Dr. Tsao wants to see how he is doing later in the week. He is concerned to take him to the OR with pancreatitis and with him as weak as he is. He is ordering an ultrasound of his chest to look at the vasculature so he has an idea of where he has some options for the port. We also discussed the need for a unit of plasma before the surgery.

We also had a visit from the neuro-sciences scheduler talking to us about getting some testing done this week that was previously scheduled for late next week outpatient. The hope is that if we can get this testing done while inpatient we will be able to get home sooner.

Last we went for the CT scan. It was uneventful and we expected it to come back normal. But I should know by now that nothing comes back normal! While they did not see anything explaining his latest bout of pancreatitis, they did see a blood clot on the end of his femoral line. We are extremely lucky we did this test because a clot can be very dangerous if undetected. This started a whole slew of converstions between 4 doctors and the pharmacist. We will be starting lovenox injections tonight. Lovenox is a blood thinner. The problem is that Alex tyically does not clot well. The fear is that in trying to break up this clot we will cause him to have clotting issues elsewhere. After talking to our hematologist, immunologist and pediatrician it was decided we will give the first injection tonight and then check labs a few hours later. The outcome of those labs will determine if he will receive subsequent doses. Assuming he does ok with the medication he will receive injections twice a day for anywhere between a week and several months.

I was supposed to be taking Mom to the airport in the morning, but after all of this it was decided that I needed to be here to monitor and speak to the doctors. Luckily, our second family has once again come to the rescue and Momo has graciously agreed to take Mimi to the airport. Our families have meshed to the point where there are no lines. I am so grateful to have them to lean on. Alex and I will miss Mimi more then we can say. We will never be able to thank her enough for walking through the trials and tribulations of the last week with us.

Please pray that the night and tomorrow are uneventful.
Ali