Saturday Afternoon

We have seen all of our doctors and don’t have concrete answers, but do have a plan! Surgery was in first. From their end everything seems good. Incision looks fine, nothing alarming. Next was pain team. We have been extremely happy with the attending that is on for pain this week. He is extremely knowledgeable and easy to work with. He explained that if a kid comes in for surgery for appendicitis  they will have some surgical incision pain for a couple days and then be good. But when you have a kid like Alex who has had serious GI issues for many years, the nerves in their GI tract are already inflamed and sensitive so the pain is a lot harder to treat and control and tends to last longer. It was helpful for Alex to hear and not get frustrated. We are back comfortable. As a matter of fact we did make one adjustment and take away something we didn’t think was helping that much. Before he had one pain med that was continuous. The other was continuous at a very low rate and he can push a button every 10 minutes to get a bigger dose as needed. We took away the continuous on that second med so he can push the button every 10 minutes, but won’t get it if not needed. Next the hospitalist and GI came at pretty much the same time. When surgery had been in they had wanted to try clamping his drain tube and were talking about trying some slow pedialyte through his Jtube tomorrow. Dr. Osuntokun examined Alex and is adamant that he is not ready yet. Dr. O has been our GI for over 7 years and knows Alex as well as anyone. We are grateful for his knowledge of our boy and the care he always takes to put Alex’s needs first. So he decided that we will stay the course until at least Monday and reassess. He also let the hospitalist know that Alex’s CBC is very abnormal for him even though it isn’t necessarily a CBC that would be alarming for others. To both Dr. O and I it looks as if there is likely an infection somewhere. He is also right at our transfusion level. His hemoglobin has fallen 5 points since pre-op labs so we will repeat another CBC tomorrow and if it has fallen at all or if he is symptomatic we will transfuse. If it drops much more I think we will have to consider making sure there is not a bleed somewhere, but we will cross that road when we get there.
So the rest of the day is just sit tight and relax. We were supposed to only due 48 hours of antibiotics, but we will continue until we know what is going on. Alex has slept quite a bit today which is great.
Thank you for everyone’s thoughts and prayers.
Ali

PS- Say a quick prayer for Maddy Moo, she is really missing Mommy. And poor Zoey is pitiful without Alex. She won’t leave his room.