Ronan is a completely new boy and it kind of makes me sad. He no longer wants to eat. His body tells him he doesn't need to because of the medication he is on. We are greatly struggling with this now that he is home. He went home Friday afternoon after I was given several tutorials on how to care for him. He has two emergency injections. One is for adrenal insufficiency and the other is for his hyperinsulinism (hyerinsulinemia/hyperammonemia syndrome). The results from the blood test to confirm this diagnosis are still pending and I am told it will take weeks for them to come back. They were supposed to be sent out Monday but someone made a mistake and they had to re-draw the blood and send them out on Wednesday instead. This isn't a huge deal since he had a PICC line there was no pain from either draw and if it will take weeks I figure what is two days.
In the mean time I am just trying to keep Ronan functioning and honestly at this point it doesn't matter what his diagnosis is I am more concerned with him eating and overall keeping him stable. We left with nine prescriptions to fill and a long list of dos and don'ts. I turned all of them over to the pharmacist and her expression resembled the overwhelming sensation I'd been feeling. I told her they could take their time and just give me a time to come back as I had to have them that night.
I gave them an hour past what she said and they had all but two ready. One was because it had to be ordered (but wasn't essential at this moment) and the other was rejected because it is too rare and needs special permission. It was one of his emergency shots but the less important one so I think we'll be ok. The important shot was the glucagon to give him if his sugar level is below 50 and he is having a seizure, unconscious or it won't come up on its own. We ended up coming back for that one. Isaac and I went to dinner while we waited and when we got back to the car I realized they had not given me his Diazoxide. The diazoxide is his medication that keeps his body from producing too much insulin and he has to have it. After calling the pharmacy they told me no script for that medication had been giving. I called the hospital and they called it into the pharmacy.
The problem then arose that it was such a rare medication that the pharmacy has to get a block lifted to even order it but this couldn't be started until Monday and Ronan had to have it right away. The pharmacist was awesome. She called around until she found one store that had the block lifted because they had one other patient on it. That store could give us a small bottle that would get us by until more could be ordered.
Since arriving home it has been an intense struggle to get Ronan to eat or drink. He is barely eating and his drinking is even worse. If this struggle continues he may end up back in the hospital. I thought we would be there today after he had a low blood sugar level and refused to drink or eat. It came down to getting him to drink with a syringe until he got enough to get his sugar up. He wasn't happy but it did the trick.
I'm really not sure what is going to happen at this point as Ronan seems to eat and drink less everyday. I plan on calling his Endocrinologist in the morning and let her know that eating and drinking are not going well. He is supposed to have surgery on Wednesday to finally fix his esophagus but I'm not sure it will happen with all his other issues still not completely taken care of. We'll just have to see how it goes.
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