We are settling back in. Alex slept until 10 yesterday morning. The he napped from 1:30 til 5:00! He was so tired. I have finally caught up on mail, laundry, unpacking etc.
Alex is happy to be in his playroom and with his toys. He is feeling pretty good. He said his "belly" (chest) feels all better, but his neck "still sores a little".
We are trying right now to decide whether to give Alex a break and cancel our trip to Cincinnati or whether to go. Bruce, Mimi and Dr. Koenig all think we should cancel. I am undecided. I'll keep you posted.
Ali
Alex and Maddy
Sunday, March 16, 2008
Friday, March 14, 2008
One of these days Alex is going to let us have an uneventful hospital stay!
We wound up drawing the labs last night. By the time we got everything done and Alex back on dextrose and feedings it was after 9:00. Shortly after he started shaking, wasn't communicating with me, had a headache, he just wasn't right. We continued to monitor his blood sugar and it was all over the place. It was up and down between 65 and 170 several times. He also got a slight fever. He finally settled down around 1:00 AM. This morning he is completely back to normal.
We are being discharged, but it will likely be around noon. We have had the nicest nurses and pediatric team since we got here. The hospital is great about letting me "be in charge". They explain everything, ask me questions, and let me help in decision making. They are firm in the belief that I know Alex best and should be involved. Overall it has been a great experience.
Again, Thanks to everyone for the prayers. We felt surrounded by love.
Ali
We wound up drawing the labs last night. By the time we got everything done and Alex back on dextrose and feedings it was after 9:00. Shortly after he started shaking, wasn't communicating with me, had a headache, he just wasn't right. We continued to monitor his blood sugar and it was all over the place. It was up and down between 65 and 170 several times. He also got a slight fever. He finally settled down around 1:00 AM. This morning he is completely back to normal.
We are being discharged, but it will likely be around noon. We have had the nicest nurses and pediatric team since we got here. The hospital is great about letting me "be in charge". They explain everything, ask me questions, and let me help in decision making. They are firm in the belief that I know Alex best and should be involved. Overall it has been a great experience.
Again, Thanks to everyone for the prayers. We felt surrounded by love.
Ali
Thursday, March 13, 2008
Alex has been such a trooper today! We started his fasting study at 11:30. It was an 8 hour fast. They tested his blood sugar every hour. If his blood sugar dropped below 45 we had a list of labs to run. At 6:30 his finger stick showed his glucose at 43. Unfortunately when they sent a sample to the lab, it showed it at 52. So we just sent another sample to the lab. If it is below 50 we will draw the labs.Alex just fell asleep.
In other news...we met with the immunologist and Dr. Koenig again. Dr. K was just coming by to check on us, nothing new. The immunologist (Dr. Pacheco) shared the results from the tests we had performed last trip. It confirms what we already know. Alex's immune system is not functioning correctly. We are going to go home and repeat a vaccine and see if he makes titers. They are just waiting for the rest of the results to come back. Once everything is back in about 2 months they will have us come back. At that point Dr. K, immunology, endocrinology and GI will have a plan for us and we will discuss it.
They will monitor Alex overnight. In the morning if he is doing well we will be discharged. The only thing left is for my teaching on the port. Someone should be here around 8 AM to do that.
I will update once I know we are being discharged. Oh and to answer some questions...we were kept in the IMU. They liked being able to monitor him continously. This morning I did convince them to let us off monitors intermittenly so we could walk around. Buggy and I were going stir crazy!
Ali
In other news...we met with the immunologist and Dr. Koenig again. Dr. K was just coming by to check on us, nothing new. The immunologist (Dr. Pacheco) shared the results from the tests we had performed last trip. It confirms what we already know. Alex's immune system is not functioning correctly. We are going to go home and repeat a vaccine and see if he makes titers. They are just waiting for the rest of the results to come back. Once everything is back in about 2 months they will have us come back. At that point Dr. K, immunology, endocrinology and GI will have a plan for us and we will discuss it.
They will monitor Alex overnight. In the morning if he is doing well we will be discharged. The only thing left is for my teaching on the port. Someone should be here around 8 AM to do that.
I will update once I know we are being discharged. Oh and to answer some questions...we were kept in the IMU. They liked being able to monitor him continously. This morning I did convince them to let us off monitors intermittenly so we could walk around. Buggy and I were going stir crazy!
Ali
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