Benjamin has jaundice now. Probably a side effect of the TPN and all his other stresses. He will have an ultrasound of the gall bladder and liver today to see what's going on. They put splints on his feet because they are turning in and they want to prevent problems later. We are also working on oral motor skills and sucking. Currently, Ben has no sucking reflex and very little swallow. His muscles are also quite stiff.
Mommy and Daddy are learning lots. Benjamin will be so much work when he comes home, that we will be getting home nursing help for some time. Ben will have an alarm monitor for his heart rate, a suction machine and humidifier for his trach, and an oxygen tank and ambu bag for emergencies. He will also be visited by therapists.
Because of the trach, there are many things Ben will have to avoid. These include pet hair, dust, water (in the trach), cold air, chalk dust, colds and viruses, and sand. He will not be a very mobile baby for some time. Therefore, we will most likely be home bound for the better part of the next year.
Tonight Jason and I will be staying in a hospital room alone with Ben. This is so we can practice caring for Ben by ourselves with a safety net. If all goes well, and his tests show nothing more, we will bring him home tomorrow. We are so happy to see an end to the hospitalization. We are a bit nervous about bringing him home, but we are thrilled to have our family together soon.
I feel the website has served its purpose. We will probably not be adding more updates. Thank you to all who visited. We feel very connected to you all.
UPDATED MAY 26, 2009
Ben actually came home on June 10, 2002 after 40 days in the NICU. We had a night of trying it on our own in the hospital and his G-tube came out, so he needed a procedure to replace it with a Mickey button. We tried it out again the next night and brought him home on the 10th. I recall it was a stormy day and the power kept flickering off and on which kept interfering with his equipment. It seemed an eternity before the first nurse shift began. A very good friend came over to keep watch during those first overwhelming hours. The entire local EMS team came out in shifts to meet Ben over the next few days. They all crowded into his tiny room and made a map of his location inside the home. It turns out that Ben actually has a very rare form of muscular dystrophy called dystroglycanopathy. He was officially diagnosed at age 6 1/2. His trach was removed at age 3 and his G-tube at 4. He continues to overcome the challenges placed before him and is still the strong, strong, little man featured in this blog.
