This has been a long, trying week. When we came home on Saturday we knew Alex still had some recovering to do. As has happened in the past, the flu is hard on Alex's body. His last set of labs in the hospital showed that his hemoglobin and platelets were dropping. His labs also showed he had yet another episode of acute pancreatitis. Although he wasn't well, we felt confident that we could do everything that needed to be done at home. Since Alex can never tolerate feeds when he has pancreatitis, our orders were to follow-up first thing Monday morning to get IV fluids to keep his blood sugar up and keep him hydrated during the day since his TPN only runs at night. We were also supposed to repeat labs to make sure they weren't looking worse. Unfortunately, both our GI and his nurse were out on Monday. It was a long hard day trying to get people who don't know us to understand what was necessary to keep Alex well. We also had a nurse from our agency to come out to assess Alex (which is protocol after a hospitalization) and she was concerned about his lungs. Monday night when Alex went to brush his teeth for the first time since his procedure he had a large amount of bleeding. Our labs didn't come back.
On Tuesday, we saw our beloved Pediatrician. He is always so helpful because he has known Alex since the day he was born. He knows all the history and is such a good judge of what is concerning and what we can let go. Without the labs, we couldn't make a whole lot of treatment plans, but we decided we would chat after the labs came back to determine next steps. We also got our fluid situation sorted out and breathing treatments ordered. By Tuesday night our GI office and Home Health Company had both called the lab multiple times with no results.
Wednesday was just more waiting and watching as we couldn't make any decisions without the knowledge the labs would provide.
Thursday we repeated the labs in the morning and had an appt with our GI in the afternoon. We were all happy that his labs are improving. We made the decision to attempt half strength feeds at an extremely low rate (10 cc/hr) and progress as Alex can tolerate. His biopsies from his endoscopy didn't provide any information about the pain he has been experiencing for almost a month now. At this point we are left wondering if the pancreatitis was brewing and the flu/strep sent him over the edge or if the pain is from something else.
Alex is improving, but is still really pale and tired. He is still in pain, but he is toughing it out. Please say some prayers for him as we continue to try and increase feeds. Please also pray for Maddy who is running a low grade temp and is coughing and sneezing. She has been on Tamiflu so we are hopeful she is just fighting a cold.
Thanks for loving our family during the good and the bad times.