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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.
Jonathan is doing better. I am only checking his temperature every 2 or 3 days now. He seems to be feeling normal again. He started back to school on Friday of last week. He is still not wanting to drink so we have changed his schedule to only be half days so I can have the afternoon to get him to drink.
On an up note, he should be getting his new wheelchair soon. I am very excited. It is supposed to be about 20 pounds lighter than his current one. I’ll post a picture when we get it.
We took Jonathan up to Scottish Rite yesterday to have his sodium checked. It was normal (146), which is great. This means that even though he isn’t drinking willingly, we are able to give him enough fluids other ways to keep him hydrated and his sodium where it should be. Sooo, as soon as he starts drinking again he can go back to school. They have really missed him and I’m betting that he has missed them.
Jonathan finished his 10 day round of Bactrim this morning. His temp is now running in the low to mid 99s and he seems to feel better. However, he is still not 100% and now is refusing to drink. We are able to force/feed him enough liquid/equivalents that he is staying pretty hydrated, but it’s obviously not the best option. On the upside, it has been 12 days since Jonathan had a seizure. We are waiting to hear from the doctors what they would like us to do next.
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