Dear Son Medical Update #10

Photo of Dear Son last night at home. While it looks like he is awake, he is sleeping.

Since my last post, Dear Son's fever has continued to drop. As of midnight it was down to 100.1 and although it was up slightly this morning around 101, I am not too concerned with the fever since this is the only time that it has increased since we left the hospital Thursday afternoon.

I have continued giving him nebulizer treatments and chest pt every four hours and Motrin every six hours. I am sitting him up the recliner for four hours and then moving him to his bed for four hours with the head of the bed raised almost all the way up. He still sounds very noisy and rattles quite a bit. I can't say that I feel very confident of his respiratory status right now. I did ask a nursing friend of mine to see Dear Son yesterday since he was so noisy and to see if I needed to take him back for medical treatment. She evaluated him and thought his left lung sounded good whereas the right lung was dimished. She felt that the rattling was o.k. since it meant the secretions were breaking up but that he wasn't wheezing. She thought he looked good as did Dad.

Around midnight, I moved him from the recliner to his bed to do the chest pt. I finished everything around 12:45 a.m. however he was so noisy and his breathing seemed labored that I moved him to the recliner at 1 a.m. where he remained until now. I did not feel very good about it at all and contemplated calling 911. I thought about what they might do if I did-they would do the nebulizer, do chest pt, do a chest x-ray and blood work to see if he had a bacterial infection. I am doing the nebulizer and chest pt and I am fairly confident that without a fever, he doesn't have a bacterial infection. They could suction him however and that would help but I just didn't know. (As an FYI, I am out of durable medical equipment dollars for the year so on January 1st, I can order a suction machine; our secondary insurance doesn't cover respiratory at all.) I guess the real issue was that I did not want to go back to the hospital for any reason. I went on-line to see what it said about chest rattling and if I should have him seen. That wasn't a good idea because when I google it, it came up with chest rattling as a final sign before death. I nearly had a heart attack then!

My plan this morning is to page Ped Neuro Doc in an hour or so and see what he says. I imagine I won't be able to get him over the holiday weekend but I'll attempt it. If he's not available, I am going to call another good friend of mine who was a Director of Nursing at a place with all special needs children. She oversaw kids with trachs and vents, all of which were special needs for years. I've never had her evaluate Dear Son before however we've been friends for a few years now and she knows Dear Son. Other than that, I'll continue to watch him and if I see any further deterioration, I'll just have to bring him back him and let them look at him. At least I'll have some clarity. Probably my biggest issue is that he really hasn't come to since I brought him home. He's opened his eyes in the morning however he hasn't really come around during the day or evening at all. He is aware when he needs to be changed but other than that, he's pretty much unresponsive and sleeping most of the time.

11/28/09~Noon Update: I just spoke with Ped Neuro Doc and he thinks that we are probably o.k. since he doesn't have a fever and we are doing all we can. He said we could increase nebulizer treatments to every two hours but that can get old. I did tell him that I actually gave him an extra nebulizer treatment at 1 a.m. last night and the night prior to help Dear Son out. He said they may try to get a visiting nurse out here on Monday (I don't have a nursing benefit on either insurance though.). He asked me to follow up with him tomorrow. After that, my nursing friend called and she is going to bring out a pulse oxygen meter to give me more information.

Note: Dear Son is eighteen years old and suffers from a progressive neurological disease along with intractable seizures, dystonia and severe mental retardation due a mutation of the ARX gene. He most recently had the swine flu and a viral pneumonia and was hospitalized from November 1st to the 26th.