Crazy day #2...
The day started early as usual. Our team came in we discussed the MRI. They informed me that the syrinx (fluid on the spine column) was still visible and Dr. Koenig would discuss more with me. They also let me know that she was concerned that his bladder appeared very distended on the MRI. They wanted a bladder ultrasound to see if he was emptying his urine correctly. So shortly after we headed up to Ultrasound for the second time this week.
Next came hematology. They agreed that Alex needs Vitamin K supplements and if we can't find an oral version he can tolerate then it needs to be done by IV infusion once every 2-3 months. So I quickly made a call to my pharmacist who informed me she cannot get Vitamin K. So I searched the internet without much luck.
I came back from lunch to find Dr. Pacheco (our allergist/immunologist) rubbing Alex's back and singing to him. Do we have the best doctors or what? First we discussed the Vitmain K. She did not want to take any chances with the vitamin K and decided the IV infusion is the way to go. Next we discussed Alex's labs adn how often she wants them. We discussed the flu and knowing Alex's history with the flu she wants us to have a prescription of tamiflu at home in case we have an exposure and Alex gets sick. Last she looked at Alex's tube and we discussed the plan.
Earlier in the week, they had cultured some drainage from around Alex's tube. It is growing pseudomonas which is a nasty bug. For right now we are treating topically. However, we are watching Alex closely for signs of infection to make sure he doesn't need antibiotics. So shortly after Dr. Pacheco left my little darling spiked a slight temp to put everyone on their toes. His labs look good so we are just watching to see what his temperature does tonight!
Next came GI! They gave us the plan for restarting feeds and also prescribed the drops for Alex's tube. They also ordered a test to be done in the next few days.
I thought my day was over. But at 4:00 Dr. Koenig and Lakeesha popped in. Talk about an unexpected surprise! They had told us we wouldn't see them today because they had clinic all day. Dr. Koenig wanted to talk a little more about the MRI. She wants to look at the bladder a little more closely as she thinks this could be the source of his pain. Apparently the bladder looked "gigantic" on the MRI. She also let me know they are still trying to determine whether his cord is tethered.
After discussing the plan for Alex's infusions they left.
So it was like a circus around here all day! Thanks for keeping us in your thoughts and prayers.