Sunday, July 12, 2009
As many of you know Tomas is back in the hospital. He had a lab draw and a GI appt. on Tuesday of last week here in Orlando. His labs that morning showed his red blood cell count very low so he needed to have a transfusion which was supposed to happen later that afternoon At his GI appt. in between, the doctor commented on his labored breathing. I told him about these "episodes" he was having and the GI doctor called the oncologist who decided to do the transfusion at Arnold Palmer and observe him for 24 hours. While there overnight he had several more "dying spells" (nice dramatic term - isn't it) and they decided to send him to the critical care unit. After several tests and tortures the medical team has found 4 problems with his breathing. 1. laryngomalacia (a floppy voice box that can collapse onto his trachea). This issue by itself should resolve and is not the main contributor to his not breathing.2. severe reflux - this exacerbates the voice box issue and is the main reason he can't breath. He has a surgery to repair this on Tuesday. It is another stomach surgery and requires about a 1 week stay for recovery. Once the reflux is fixed the voice box should not be an issue.3. He has a blood vessel running behind his esophagus that should be in front. Cardiac still needs to evaluate, and decide what to do (if anything).4. He aspirates (swallows wrong) when he feeds. He doesn't always do it but it would damage his lungs (or kill him) if it were to continue. So because of the aspiration he can not feed orally anymore. We thought we would be able to feed him using the G-tube already in place but because it empties into the stomach and he refluxes it back up causing the voice box to collapse the doctors placed a tube down his nose that goes directly to his small intestines. After the surgery we will be able to use the g-tube for feedings. He can not take food by mouth until he can pass the aspiration test. Once he is discharged he will be tested every 4-6 months. The GI doctors have also said that typically when kids get to solid food (real solids - chewing) they do better so we are hopeful he will not need tube feedings forever. He also has only gained 2 ounces since he was discharged from Winnie Palmer (2 weeks ago). The doctors think it was because he was using so much energy just to breath that he hasn't had a chance to gain any weight. He is on continuous feeds and is sleeping a lot now, probably because he didn't sleep very well before. He is trying to catch up. That's it for now. I do not have access to email very much and rarely get a chance to leave his bedside (for fear he'll stop breathing). He is being monitored but the monitors don't pick up his particular episodes so it really is matter of someone watching him. Mike's aunt is here helping and we will all be staying at the Ronald Mcdonald house next week. I will try my best to update everyone after the surgery.