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Jonathan has a stomach virus again/still. He threw up on Wednesday and then seemed to get better. But, then he threw up again last night. Also, we have an appt. with the ENT on Wednesday to see about possible surgery to remove some of the tissue where the sebaceous cyst keeps getting infected. Turns out, Jonathan does not have full blown Diabetes insipidus. The small dose of DDAVP that they put him on brought his sodium level down to 143 which would be great for a normal person, but was really bad for Jonathan. Because his body wanted his sodium to be higher, he basically just fell asleep and couldn’t wake up, which just happens to be a symptom of your sodium being too low. So, they have now taken him off of the DDVAP and we are back to the way things were before. Jonathan has also been dealing with a very infected sebaceous cyst that we noticed about two days after he got out of the hospital. He will finish his second round of very strong antibiotics tomorrow and it finally looks a lot better. Thank the Lord we did not have to go back to the hospital for that. We were scheduled to pick up his new wheelchair on Monday, but it is now not going to be ready in time, so we are going to be picking it up on June 23. I can’t wait. I’ll be so glad to not be pushing around a purple wheelchair anymore. Plus, the new one is about 20 pounds lighter. Jonathan was released from the hospital this afternoon. He is now on a daily dose of DDAVP for his partial Diabetes insipidus. He has this because his pituitary gland is so small. Thankfully, his pituitary gland works enough and we are only supplementing what it can’t handle. We are still in the hospital. His sodium is better now. Althought 150 is really not bad for him as long as he is hydrated. He has not thrown up since Sunday. His temp is ok again. They ran a CBC to make sure he didn’t have an infection (he doesn’t). They are now concerned that he might have Diabetes Insipidus (water diabetes). This has been a concern in the past. They did some tests and he is borderline with diabetes insipidus. Sooo, we are going to start him on a low dose of the hormone that the pituitary gland would normally produce. It will be a low dose given orally ever night. It will help him to concentrate his urine better and keep more water in his system instead of peeing it out. Jonathan’s pituitary gland is very tiny, so we will eventually have to replace a lot of his hormones. He is already getting a daily dose of hydrocortisone (what the adrenal glands produce to help your body deal with stress). The level of his thyroid hormone is also getting lower as he gets bigger because his pituitary can only produce so much, so we will more than likely have to start giving him thyroid hormone too before the end of the year. If all goes according to the doctor’s plans, it looks like we will be able to go home tomorrow. Jonathan started throwing up around 4:30 this morning and his temp was 103.3. He got so dehydrated so fast that we had to bring him to the hospital. His sodium was a little high at 150 and he was pretty dehydrated. The doctors have decided to admit him. They have also started him on a really strong antibiotic because his fever was so high. |
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